Remedy

Welcome to Remedy, a blog by U.S. Pain Foundation. Remedy features information about promising treatments, tips and strategies for self-management, unique perspectives from patients, clinicians, and caregivers–and much more. To submit an article idea, email emily@uspainfoundation.org.

Please note: U.S. Pain Foundation does not endorse any specific treatment options; blog posts are educational only. Views expressed by authors are their own and do not necessarily reflect those of the organization.

 

Finding your way back

By: Ellen Lenox Smith

When life is moving forward, discovering you have been diagnosed with a condition that will be with you forever and permanently change the course of your life is heartbreaking and overwhelming. It took me over a year to begin to put the broken pieces of my puzzle into some formation that began to recreate purpose and meaning, but the journey was heartbreaking and hard.

I have had 25 surgeries, nine catatonic episodes prior to my second neck fusion, and spent four years in a wheelchair. And yet, I am happy and grateful for the life I have now. The transition one goes through to get to acceptance and not give up, is not easy. However, the time you put into redefining yourself is so worth it.

So what can you do if you, too, are diagnosed with a condition that is not going to go away but could potentially progress and permanently alter the course of your life?

  • Allow yourself to mourn your losses- you are human, and what you thought was the possible course of the life you worked towards may not be able to happen.
  • Find ways throughout this process to vent the emotions that are flowing through you- the sense of loss, emptiness, “why me,” “how will I go on,” and “how will others understand.” For me, that cleansing comes with writing.
  • Educate yourself about your condition, and open yourself to talking with others living with the same condition to see what has worked to improve their quality of life.
  • Find a supportive team of doctors. Don’t feel you have to stick with one just because it was someone else’s match. What works for one person is not necessarily right for another.
  • Try to consider unconventional methods of treatment that can’t hurt you but may help you. You never know when a treatment might be right for you.
  • Don’t allow yourself to give up despite the overwhelming days. Instead, wait for that next day and hope you awake feeling that fight that will get you stronger again.
  • Don’t beat yourself up on those really difficult days; we all have them and wonder how we can keep doing this. That negativity comes back in rapidly on that bad day.
  • Think about taking on this simple activity I do every morning- I stand by the window, put my hand over my heart, and run through my mind what I do have in life I am grateful for- family, my service dog, walking again, being alive, nature, peace around me, etc.
  • Be prepared to handle the doubters, the ones that step away from you, and that may include members of your own family. But as this hurt comes on, also notice those that you didn’t expect to come into your life. There are many good people out there with kind, compassionate hearts so let them be your strength and learn to let go of those that cause you hurt, judgment, and rejection. This is not easy but becomes very freeing when you are able to let go of that hurt and judgment. You know your truth; you should not have to keep explaining and trying to reel them back in. Some will come around and others won’t. They have to live with the choices they have made.
  • At some point, the mourning needs to become less of your focus and instead, you need to begin to learn how to live with this new condition.
  • Think of what needs to be done to keep you safe along with your medical support- like stairs or a ramp, equipment, exercise, and possible PT, food, and medications that are safe and compatible. Try to address things within your control to help improve your days.
  • When you have learned to accept this condition is with you, that it is changing the course of your life, and is altering your plans you dreamed of, then figure out how to find your purpose in life again. Simple things like reaching out to help another also trying to cope goes a long way. Maybe you can volunteer from home in some capacity. I am shocked by how many in life are silently suffering. And to add being alone to this formula is heartbreaking.
  • Find your way and learn to hold on to hope even when one tells you there is no cure, to expect progression and a rough road ahead. I have heard all this, have come home devastated and in time, have pulled myself back up and decided to show them I can still live a decent life despite the challenges.

I understand others can’t understand why I can say I am grateful for the life I have. Is it limited? It sure is but I am still here, still able to watch our four son’s lives unfold, still here to share my days with my husband of 47 years together, still here to love and be loved by my service dog, and still here to reach out and try to be there for others. I am not fulfilling the dreams I thought I would have to follow, but I have recreated new expectations like getting out of that wheelchair, taking a walk again, working in my garden, volunteering, advocating, and when lucky, even traveling to conferences to speak and share. No, this was not close to the life I thought I would experience, but it has brought on special friendships and experience due to what I have had to face.

May life be kind to you, and may you, too, find your way back in time.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She also created the Rhode Island Medical Marijuana Patient Coalition, serves as secretary of the Rhode Island Patient Advocacy Coalition, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 47 years and is the proud mother of four adult sons and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.

A Q&A about telehealth with Dr. Jeffrey Fudin

In August, we hosted a question and answer session about telehealth and accessing pain care during the COVID-19 pandemic with Jeffrey Fudin, PharmD, DAIPM, FCCP, FASHP, FFSMB, a pharmacist who specializes in pain care. Below, we recap some of his answers — and share his responses to a few questions we didn’t get to.

Q: What equipment do I need to do a telehealth visit and will it work with Wi-Fi?

A: Telehealth will work with Wi-Fi and I encourage accessing any platform with Wi-Fi versus the general internet, because you may not have unlimited minutes or associated fees. You can use a smartphone (one of those flip phones is not going to work), and any smart device or a laptop that has a camera on it will be good. Almost all laptops and desktop computers now have cameras, but if it’s old, you can buy an inexpensive camera that clips to the top of the screen.

Q: How can the doctor diagnose me without actually doing a physical exam?

A: Right now, most people are asking, “How can someone get a physical exam if they’re not in the same place as their doctor?” Any new patient who’s being examined for pain an in-office visit will most likely hear, “Take your foot and press up against my hand. Raise your arm and press down. Does it hurt if you do this?” We can still do those things on telehealth!

There are also other things we can do: we can get your pulse, or if you’re with somebody, we can show that person how to take your pulse. You can certainly take your temperature. If a patient is on a lot of blood pressure medication, I‘d tell them that they need to buy a blood pressure cuff, and some insurance companies will pay for that. Generally speaking, some very sophisticated telehealth equipment exists now that allows patients to be monitored in real-time, even at home (although, again, paying for it has to be approved by your insurer).

Q: When COVID-19 is over, will we still have telemedicine?

A: I think it would be great if it happened, and I think that insurance companies are starting to see that this is very doable and cost-effective for all involved. The federal government has been doing this for years, as well as the Department of Defense and VA hospitals; and I know for certain that Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) are looking at continuing these services. The waiver that they put in place on March 6 now allows beneficiaries in any geographic area to receive telehealth service. So that’s tremendous.

So telehealth, first of all, is giving people an opportunity to see real specialists. COVID-19 has actually made me busier because I can communicate with a patient and a doctor in Ohio when I’m physically in New York. So the accessibility is absolutely phenomenal; you can tap into specialists from all over the country.

There’s going to be a continuation of this. It’s new for a lot of people, and I think insurance companies saw fraud as a potential risk for telehealth. I’m not seeing that at all; I’m seeing doctors who are more accessible and extending hours because they don’t have to spend time in traffic and can work from home. Insurance companies are starting to see that the outcomes are actually great.

Q: Can an individual establish pain care in a first visit by subscribing to telehealth and its requirements? 

A: I have the regulation right here: the CARES Act allows any geographic area to remain in their homes for telehealth appointments and it is reimbursed by Medicare and allows interactive visits to be delivered by smartphone with real-time audio and video. The Medicare document states that the requirement for live visits is removed during COVID-19 and that providers can offer telehealth services and treat the beneficiary receiving these services through a separate provision that allows federally qualified health centers and rural health clinics to provide telehealth services to Medicare beneficiaries during COVID-19 emergency period. So, you can be a brand new patient, somebody can see you by telehealth, and it should be covered.

A new provider will want previous records if you’re transferring to another doctor. You could be a brand new patient that’s never seen: that may make a pain care provider more squeamish and they may want to see you in person. But that’s okay! They may say, “I need to see you one time, and then we can have appointments via telehealth,” which I understand because people are being so highly scrutinized with opioid prescribing today, both patients and providers need to be careful.

Q: How can I help my doctor understand the severity of my pain via telehealth?

A: You have to use descriptors. Not only is it difficult for the patient to express to the provider what their pain is, it’s difficult for the provider to understand what patients are dealing with on a daily basis. So for example, I’ll say to a patient, “What’s your pain on a scale of 0 to 10, 0 being nothing and ten being the worst imaginable?” If it’s a woman I always say, “Have you had a child? We’re going to call childbirth the worst absolute pain.” If it’s a man I’ll say, “Listen, if I was to take a hot iron and place it on your tongue, that’s a 10.”

I realize that one person’s 10 is not another person’s 10, and that’s why using a numerical scale is not 100%. You need to tell a provider, “It feels like somebody put ice on a sore tooth,” or “It feels like sticking a knife in my belly and twisting it, it’s a jabbing kind of pain.” You need to be very descriptive. You also need to tell them the things that you can do, the things that you can’t do, and the things that you want to do.

Q: I retired and now live in North Carolina having moved from Pennsylvania. My pain management doctor is still in Pennsylvania. I travel there once a month and have to get my prescription filled in Pennsylvania. The pharmacy here in North Carolina has refused to fill the prescription, but I haven’t had enough time to find a doctor locally. What should I do?

A: As you know, being able to prescribe and mail order prescriptions over state lines is a complicated issue that varies by state. During COVID-19, the federal law has lifted a lot of those restrictions across state lines, depending on the situation. In this particular situation, it’s always been legal for a pharmacy to fill a prescription from another state. My understanding is that the pharmacist is refusing to fill the prescription because the doctor is out of state and because it’s been such a long period of time has gone by. I, personally, think that’s unreasonable. The federal government has made exceptions and depending on the state, states have made exceptions and you could file a complaint. Of course, by the time the complaint is heard, it could be another couple of months that go by.

But I wouldn’t alienate the pharmacy or the pharmacist. I’d make an appointment in advance and say, “I’d like to come in and speak in person to the pharmacist to explain my situation. I’m not asking for any promises, I just want you to understand what’s going on.”

In advance of doing that, I would contact the physician in Pennsylvania, and ask that physician to write a letter. In that letter, invite the pharmacist to call and speak to the physician and the physician will, hopefully, be humble enough to say, “I’ll provide you with any information you need. This patient is in a difficult situation because of the COVID-19 pandemic, and we are doing regular visits by telehealth. If you need transcripts for that or chart notes, we’re happy to supply them, as long as they sign a HIPAA waiver.”

Make an appointment with the pharmacist, put on a mask (maybe two masks, maybe a face shield!), and say, “This is my situation: I’m seeing a physician in Pennsylvania, and I would like nothing more than to have a local physician– if you can help me find one, you’d be my best friend!” The pharmacists have, according to federal law, an equal and corresponding responsibility with physicians to ensure that prescriptions filled are for a legitimate purpose. The pharmacist probably doesn’t think that it’s an issue anyway, but they’re filling hundreds and hundreds of prescriptions and they don’t want to take a chance. So that’s how I would approach it.

Q: How do I ask for an increase in my medication and make sure I am taken seriously but do not raise any red flags?

A: Have an open and honest discussion with your doctor and tell him/her your reluctance to discuss the topic and why. One option for you is to change to another opioid. Because of something called cross-tolerance, when people stop responding well to one opioid, they can switch to another at a 20% reduced dose, which for you might actually seem like an increase due to the phenomena known as cross-tolerance. That could be a win-win for you and the doctor. The mere suggestion to your doctor will show that you’re educated about these medications and that you’re willing to compromise. If that doesn’t work, the dose of the new medication can be increased to an equivalent of what you were previously on with the original medication. Although that is not technically a “dose increase,” essentially it would be for you, since your opioid tolerance to the new drug is not exact to the previous one. The result? Everyone wins. See “Opioid Equivalency” for more information.

Q: My clinician won’t see me anymore because I tested positive for medical cannabis, which is legal in my state of Missouri. What should I do? 

A: If you signed an opioid agreement that precludes the use of cannabis, there isn’t much you can do because you made a promise to follow certain rules. For example, if I learned that a patient was using alcohol regularly by testing their urine for ethyl glucuronide, while I was prescribing opioids and perhaps a benzodiazepine like alprazolam, I would not continue the medications even though alcohol, like cannabis in your state, is legal. Irrespective of the laws governing cannabis use in your state, there are drug interactions with cannabis and opioids. Since your doctor is prescribing opioids, he/she needs to be concerned about your safety and their own liability.

Q: Some providers seem afraid to prescribe over telehealth even though it is allowed. What can we do to educate and empower providers about the new rules? 

A: Show him/her the CARES Act: American Medical Association COVID-19 pandemic telehealth fact sheet. This shows information supported both by government agencies and by your doctor’s peer group.

About Dr. Fudin

Jeffrey Fudin, PharmD, DAIPM, FCCP, FASHP, FFSMB, is the Clinical Pharmacy Specialist and Director, PGY-2 Pharmacy Pain Residency Programs, at the Stratton VA Medical Center in Albany, New York. He is also the CEO and founder of Remitigate Therapeutics, a virtual pain management consulting firm, and owner and managing editor for paindr.com. Dr. Fudin holds adjunct faculty positions at Western New England University College of Pharmacy and the Albany College of Pharmacy & Health Sciences; he also serves as Section Editor for Pain Medicine, Co-Editor-At-Large for Practical Pain Management, Senior Editor for Pain Medicine, and as a peer reviewer for several professional journals. In addition, Dr. Fudin is the Founder and Board of Trustee for the Society of Pain and Palliative Care Pharmacists, where he serves on several committees and is a Diplomate to the Academy of Integrative Pain Management and a Fellow to the American College of Clinical Pharmacy, the American Society of Health-system Pharmacists, and the Federation of State Medical Board. Dr. Fudin is a prolific lecturer, writer with over 300 publications, and researcher on pain management topics.

The Aug. 24 webinar on telehealth was sponsored by Salix Pharmaceuticals.

My journey of finding a health care provider 

By: Brandy Garcia 

Finding health care providers that understand chronic pain can be daunting. I started having head pain when I was a teenager, it took me over ten years to find providers that I trust. I have now been with my neurologist for 11 years. The process was not easy, for many reasons, but the hardest part was going without help until I found someone who listened to me.

It feels like I have had head pain my entire life but I remember it started to affect my daily life when I was in high school. I had migraines that kept me in bed for days or headaches that lasted for a week straight. Every year my parents would tell my doctor about the pain, only to hear it was due to my menstruation. It was not until I began having terrible jaw pain that the doctor became concerned. She still did not believe I had significant head pain but began testing my heart and lungs. After my heart and lung test got an all-clear, it took about 3 years to get referred to a neurologist.

At this point, I had made numerous visits to the emergency room for jaw and head pain. I was told a slew of things by different doctors. Most often, I was told to see an OBGYN and get on birth control. I knew my pain was more than just once a month, and every time I heard this, I felt defeated and crushed. I could not understand why my pain was not taken seriously or why everyone was blaming it on me being a woman. It was not until I aged out of seeing a pediatrician, I was able to make a connection to a neurologist.

My very first experience with a neurologist was frightening. He inundated me with questions about my pain, social habits, and symptoms. I was so overwhelmed I barely answered any of his questions. I felt that I was being interrogated rather than questioned. He did not believe my level of pain nor did he believe the symptoms I explained. I was advised to not think about the pain so much and use over the counter pain relievers. This experience left me with a doctor who did not believe me or try to help me. For years I walked around with bottles of over the counter medications jingling around in my purse. I decided to look for another doctor when I was told to stop thinking about it so much and my symptoms would go away. The doctor believed that I was making it all up and that my mental state was the sole reason for my symptoms.

The search for a neurologist in a small state was taxing, many providers did not take my insurance or were not accepting new patients. After many years of self-treating, due to a lack of doctors, I found someone that insisted I get an MRI. I was thrilled to finally find someone who believed me enough to send me for testing. My excitement did not last long, as I was told the only thing they could do was to prescribe a caffeine pill. After I received the prescription the doctor did not want to see me for follow-ups. I only saw them when I needed more medication. The medication did not help but I felt I had no other choice. My doctor was not a neurologist and did not understand the level of pain that I was having. My search began again when my symptoms worsened, and my primary care could no longer help.

At that point, I was 25 years old and had spent the last ten years of my life in pain with no outlook or relief. My symptoms had started to include visual auras, dizziness, and numbness of my face. With the help of my family, I was introduced to a neurologist and a nurse practitioner. At my first appointment, they both sat and listened to every word I had to say. Every symptom mattered to them, and so did my level of pain. Immediately they devised a plan to help stop the pain while we waited for the results of an MRI and blood test. I never felt so comfortable telling a doctor about my pain and had never been so happy to see a doctor. Eleven years later I am still with this doctor and nurse practitioner. Over the years, my pain level and symptoms have changed drastically. No matter what, they have never questioned my mental state or equated my pain to being female. What they have done is built a trusting relationship by listening and understanding my experience with migraines. I no longer worry about telling my doctors my symptoms or the severity of my pain. I trust that they will do everything they can to help me. Because over the past 11 years, they have worked with my primary care and therapist to find treatments that might work for me.

Even though it was a long painful road to find a doctor, I never gave up hope. I encourage anyone I know to always search for a doctor they feel comfortable with. Whether you have an illness or not having a doctor that listens and you can trust is truly a gift.

Finding health care providers that understand chronic pain can be daunting. I started having head pain when I was a teenager, it took me over ten years to find providers that I trust. I have now been with my neurologist for 11 years. The process was not easy, for many reasons, but the hardest part was going without help until I found someone who listened to me.

It feels like I have had head pain my entire life but I remember it started to affect my daily life when I was in high school. I had migraines that kept me in bed for days or headaches that lasted for a week straight. Every year my parents would tell my doctor about the pain, only to hear it was due to my menstruation. It was not until I began having terrible jaw pain that the doctor became concerned. She still did not believe I had significant head pain but began testing my heart and lungs. After my heart and lung test got an all-clear, it took about 3 years to get referred to a neurologist.

At this point, I had made numerous visits to the emergency room for jaw and head pain. I was told a slew of things by different doctors. Most often, I was told to see an OBGYN and get on birth control. I knew my pain was more than just once a month, and every time I heard this, I felt defeated and crushed. I could not understand why my pain was not taken seriously or why everyone was blaming it on me being a woman. It was not until I aged out of seeing a pediatrician, I was able to make a connection to a neurologist.

My very first experience with a neurologist was frightening. He inundated me with questions about my pain, social habits, and symptoms. I was so overwhelmed I barely answered any of his questions. I felt that I was being interrogated rather than questioned. He did not believe my level of pain nor did he believe the symptoms I explained. I was advised to not think about the pain so much and use over the counter pain relievers. This experience left me with a doctor who did not believe me or try to help me. For years I walked around with bottles of over the counter medications jingling around in my purse. I decided to look for another doctor when I was told to stop thinking about it so much and my symptoms would go away. The doctor believed that I was making it all up and that my mental state was the sole reason for my symptoms.

The search for a neurologist in a small state was taxing, many providers did not take my insurance or were not accepting new patients. After many years of self-treating, due to a lack of doctors, I found someone that insisted I get an MRI. I was thrilled to finally find someone who believed me enough to send me for testing. My excitement did not last long, as I was told the only thing they could do was to prescribe a caffeine pill. After I received the prescription the doctor did not want to see me for follow-ups. I only saw them when I needed more medication. The medication did not help but I felt I had no other choice. My doctor was not a neurologist and did not understand the level of pain that I was having. My search began again when my symptoms worsened, and my primary care could no longer help.

At that point, I was 25 years old and had spent the last ten years of my life in pain with no outlook or relief. My symptoms had started to include visual auras, dizziness, and numbness of my face. With the help of my family, I was introduced to a neurologist and a nurse practitioner. At my first appointment, they both sat and listened to every word I had to say. Every symptom mattered to them, and so did my level of pain. Immediately they devised a plan to help stop the pain while we waited for the results of an MRI and blood test. I never felt so comfortable telling a doctor about my pain and had never been so happy to see a doctor. Eleven years later I am still with this doctor and nurse practitioner. Over the years, my pain level and symptoms have changed drastically. No matter what, they have never questioned my mental state or equated my pain to being female. What they have done is built a trusting relationship by listening and understanding my experience with migraines. I no longer worry about telling my doctors my symptoms or the severity of my pain. I trust that they will do everything they can to help me. Because over the past 11 years, they have worked with my primary care and therapist to find treatments that might work for me.

Even though it was a long painful road to find a doctor, I never gave up hope. I encourage anyone I know to always search for a doctor they feel comfortable with. Whether you have an illness or not having a doctor that listens and you can trust is truly a gift.

 

Brandy Garcia has lived with chronic migraine for over 10 years, but she doesn’t let that stop her. While raising three children, Brandy is pursuing a degree in psychology and writing poetry. She became a U.S. Pain ambassador to help others who have lived in pain, like her. She believes that people in pain can live a fulfilled and joyful life.

My silent wait

By: Ellen Lenox Smith

During this pandemic, many of you are experiencing what those of us have had to learn to live with a chronic condition. You are wearing masks, washing hands frequently, isolated from many, avoiding stores, crowds, and learning to live an altered life until this pandemic lifts. And when that happens, you will get to go back to a version of the life you knew. And I and others in circumstances like me will get to return to the help we need to live a better quality of life that has been put on hold.

For people like me, this pandemic has caused the cancellation of the much needed but defined as non-essential medical help, I am used to turning to. For example, I was supposed to fly to Ohio in April for a follow up on my dislocating jaw caused by two neck fusions. A specialist there is the only one that is able to treat my condition with a mouth brace that needs adjusting every two to three months. Obviously, that has been indefinitely canceled so I have had to revert back to pureeing food to not chew and sift the jaw. I have also gone to ear, nose, and throat doctor for years now every five weeks to remove the ear wax that fills the canals and causes ear pressure, loss of hearing, and discomfort. But, that was put off for months to get corrected due to the pandemic. Then there is the gut that is nonfunctioning, I have attended colonic sessions frequently to clean me out and keep me safe and that was shut down, also. I had to learn to do home treatments on my own to try to empty the bowels, which is just something I have had to accept and make the best of.

Living with two incurable conditions, Ehlers-Danlos Syndrome and sarcoidosis, life was initially jolted. However, slowly through the years, I have had to face the loss so many things that were an integral part of who I was and what I wanted to be doing. But when something like this hits you, you have to make a decision, do you spend the rest of the time you have left feeling sorry for yourself and feeling it’s only happening to you? Or, do you can mourn your losses and then pick up your pieces and find ways to feel empowered, educated, and learn how to feel purpose and value along living with hope. Trust me, be kind to yourself, and know this is a process you have to go through but you actually can be a stronger better person for it. When we truly open our hearts and eyes, we will see that we are not alone with suffering and hardship – it is all around us daily.

So as you all wait to return to some form of normalcy, others like me will be shifting from our silent wait to returning to the medical care and treatment that have had to be put on hold. You will get to do many of those things that have been missing and we will get to watch your life opening back up as we remain as we are but we will be rewarded with our help presently missing. At least getting our treatments will help with the quality of our lives but I do hope you will remember what it has been like to have life jolted like this. And if you do, maybe you will learn to show more compassion to your neighbor, friend, family member or even stranger caught in a medical battle that will continue on with their lives. Let’s use this horrific experience of living with this pandemic to become kinder humans.

May life be kind to you.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for the U.S. Pain Foundation and is a member of its Board of Directors. She also created the Rhode Island Medical Marijuana Patient Coalition, serves as secretary of the Rhode Island Patient Advocacy Coalition, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 47 years and is the proud mother of four adult sons and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim coach.

How my family helps me through my pain

By: Brandy Garcia

My children, husband, and I have been living with chronic migraine for over 10 years. I am the one diagnosed with chronic migraine, but my disease affects everyone in my home. I always knew my pain affected my daily life, what I did not know was how much it impacted my husband and children. Sometimes my pain is so severe that I cannot even think about another human nevermind recognize what it is doing to them. Witnessing my husband suffer from a migraine turned my view of the disease around. It was not until this moment that I was able to comprehend how my migraine disease affects my family.

When the reality of the pandemic set in our family stress and anxiety skyrocketed. I went months without being able to receive preventative medications. I became increasingly tired and irritable. Most days, I was in bed with pain. Looking forward I saw no signs of relief; I saw nothing but pain in my future. Because I was in such a negative space, I missed so many important things that were happening around me. Recently I was able to get preventive care, which has helped me have more pain-free days. When my pain began to decrease, I noticed my husband complaining of head pain and light sensitivity. I immediately began looking for ways to help alleviate his pain. Turning off lights, ice packs, hydration, and minimizing sound are all things that help me during an attack. When I became the caretaker, I realized how much my chronic pain affects my entire family. I also formed a new appreciation for my husband and all that he does for me.

I can count on one hand how many times I have cared for my husband’s head pain. It is impossible to count how many times he has cared for my pain. The things I did for one or two days are the things he does every day. He never questions my pain, nor does he deny it. He makes sure I have all the things I need to make it through an attack. From hugs to medication and everything in between. He does not shy away from helping me or caring for our three young children. They have sat on the couch next to me in the dark switching out my ice packs too many times. Without my family’s love and understanding, I do not know if I would make it through the attacks. I needed my pain to subside to be able to see anything but myself. I was stuck in a negative mindset and I could not see a way out of the pain, anxiety, or depression. I am grateful for the pain-free days that allowed me to experience my disease from another point of view.

For so many years I assumed the pain only affected my physical and mental state. I can now see that being a caretaker is taxing and has mental implications of its own. This new view of my family has filled my heart with love and my mind with positivity. Knowing that I am not suffering from pain alone has allowed me to have compassion and appreciation for my family. Changing my mindset about my pain and acknowledging the support I have has lifted my spirits tremendously. My family has now become part of my treatment plan, their love and support are needed to help me through the hard days.

 

Brandy Garcia has lived with chronic migraine for over 10 years, but she doesn’t let that stop her. While raising three children, Brandy is pursuing a degree in psychology and writing poetry. She became a U.S. Pain ambassador to help others who have lived in pain, like her. She believes that people in pain can live a fulfilled and joyful life.

COVID-19 magnifies stress on caregivers

By: Stu Smith

Over the past few months, the American public has been provided a great deal of scientific and medical information relative to COVID-19. We have learned from the nation’s best scientific minds that for the overwhelming majority of the general population, this disease presents a minimal threat to health and well being. The vast majority of healthy individuals, when infected with COVID-19, appear to experience physical symptoms, not unlike mild flu or a common cold. On the other hand, this virus can produce painful and debilitating symptoms when contracted by the elderly or those with underlying conditions. In fact, this virus has proven lethal for many in these vulnerable categories. Clearly, those suffering from chronic medical conditions, or disabilities find themselves at great risk, should they become infected. As the risk to patients requiring caregiver support escalates, the burden placed upon them has increased exponentially.

For the better part of the past 15 years, I have been my wife’s primary caregiver. She suffers from two treatable, but currently incurable, conditions. Both are potentially debilitating and life-threatening. Based upon my years of providing intense physical and emotional support for my wife, I have reached the conclusion that the most critical task in caring for a chronically inflicted patient is to attempt to create and maintain a physically safe and psychologically secure environment. This requires caregivers to remain acutely conscious of both immanent and potential threats to a well crafted secure environment. While it may be possible to neutralize all potential threats to a patient’s sense of security, one can, with due diligence, minimize or eliminate potential hazards.

My wife and I have confronted numerous threats to her physical safety and emotional sense of well-being. For example, on a trip to Wisconsin for surgery, an airline attendant recklessly destroyed her wheelchair, leaving us stranded without this specially designed piece of necessary equipment. On many other occasions, neurological issues left her comatose and dangerously close to losing her life. We were able to overcome these threats to her life and the additional emotional trauma of her possibly being confined to a wheelchair for life. We faced these challenges with all the courage we could muster. We would also face our fears and hopes together with many tears shed in the process. She is now walking considerable distance and her most recent neck surgery appears to have eliminated any immediate threat to her life.

I certainly do not consider myself an expert in the field of caregiving. I am just an ordinary guy driven by unforeseen circumstances into the role of long-term caregiving. The source of my understanding as to what I consider the critical essence of this demanding task is 15 years of direct experience. The coronavirus presents a new and dangerous threat to the health and safety of both caregiver and patient, particularly if they are both advanced in age. With this challenge presented by this new pandemic, I, along with the millions of other family caregivers, must apply all we have learned to resist this new potentially existential threat.

While there are many aspects of caregiving, such as assisting with basic physical needs, which are obvious, there also exist elements of caregiving that are much more nuanced and thus less obvious to the layperson. Depending upon a patient’s condition, care can prove physically and emotionally exhausting. Indeed, intense caregiving may prove to be an emotional endurance test. One might compare long term caregiving to a roller coaster ride that includes high anxiety without the enjoyable thrills and excitement.

As a result of the physical and emotional pressures involved in caregiving, it is critical that the caregiver make the effort to maintain his or her own physical health and emotional equilibrium. It is essential that the caregiver find the time to focus on self-care and not find oneself embracing the role of martyr. This will only diminish an individual’s long term health and wellbeing, thus limit his or her capacity to provide productive long-term care.

The chronically ill or disabled, quite understandably, often perceive the world as a threatening environment. This should not be viewed as an unhealthy paranoia, but instead, a justifiable fear based upon very real threats to a patient’s health and psychological wellbeing. Individual patients with physical limitations and heightened emotional sensitivities are very vulnerable to everyday activities. For instance, they may slip on an icy sidewalk causing a setback in their treatments. This can then take many months to then correct.

This virus is presenting those with compromised immune systems and other risk factors with an extreme threat. The emotions of fear, anxiety, frustration, and anger must be dealt with and somehow overcome if we as caregivers and patients are to maintain a sense of security and emotional wellbeing. At times like these, I always attempt to keep the following quote active in the forefront of my consciousness: “We walk this path together and if you stumble, I will take your hand and if I tremble, you will hold me tight as all is not lost.”

Try to stay safe, take care of yourself, and may life be kind to you.

Stuart Smith is the co-director for Medical Cannabis Advocacy for U.S. Pain Foundation, along with his wife, Ellen, who lives with two rare conditions. Stu has and continues to be Ellen’s caregiver and together, they raise awareness surrounding invisible pain and the effectiveness of medicinal marijuana for pain patients.

Ellen and Stu live in Rhode Island with Ellen’s service dog Maggie and have raised four sons and enjoy their five grandchildren.

Personal perspective: Mia Maysack on the need for better care for migraine and headache diseases

In the video below, U.S. Pain ambassador Mia Maysack talks about many issues all patients can relate to – from the struggle of keeping up with medical appointments, to step therapy, to unaffordable treatment options.

The video was recorded as part of our INvisible Project: State Advocacy Virtual Campaign in honor of Migraine and Headache Awareness. (Mia was featured in the most recent edition. You can read her full story here.)

To watch the video featuring all INvisible Project participants, click here. Even though June is over, there is still time to urge state policymakers to better protect and support people with migraine and headache diseases! To join the campaign, click here.

 

About Mia Maysack

Mia Maysack is a chronic pain warrior, U.S. Pain Ambassador, and Volunteer Patient Advocate. She was recently featured in the INvisible Project: Migraine 4th Edition. Along with writing for Pain News Network, she is the Founder of Keepin’ Our Heads Up and Peace&Love Holistic Health/Wellness. Mia recently created a new booklet, “A Guide to Reclaim Your Mind: Mimi’s Mini Migraine Manual” for patients with migraine and headache diseases. To request a booklet, contact Mia through her website.

Tips for talking to your doctor via telemedicine

by Gwenn Herman, LCSW, DCSW

Many patients are trying out telemedicine for the first time as a result of COVID-19. But figuring out the technology can be overwhelming, and you may find it difficult to get your concerns and needs across in a remote setting.

Below, I’ve outlined some tips for how to get the most of your virtual appointment.

  • Before you have your appointment, take the time to write out your questions and concerns.
  • If possible, don’t attend the telemedicine session alone. It is helpful to have someone with you. Sometimes it is hard to remember everything that is said to you when you are in pain and nervous about a visit.
  • If a caregiver will be on the call with you, share your list of questions with them. Have them write down the doctor’s instructions. They can also be an advocate for you. Remember to introduce your caregiver to the doctor.
  • Situate your webcam where you feel comfortable, for example, lying on a mat on the floor, propped up in bed wearing your street clothes, sitting in a chair with pillows, leaning against a wall. If needed, have a glass of water or tea with you. It is an important opportunity for the doctor to see how you acclimate in everyday life and not in an office setting.
  • Secure a private place for the appointment whether you are in your home, office, or car. It is important not to have distractions or background noise. Ensure that there is adequate lighting, so the doctor has a clear view of your face. Have ready X-rays, MRIs, medical reports, a list of medications, herbs, oils, vitamins, supplements, medical cannabis, and reactions to them ready for your provider.
  • A medical appointment can be very intimidating when pain is invisible, especially if this is your first time using telemedicine. Remember, it is your body and you have a right to quality care.
  • It may also be the first time that your provider is performing a telemedicine appointment, so your provider may also feel uncomfortable or awkward. It is a new development and there is a certain amount of trial and error. Be patient with each other.
  • It may be helpful to role-play how you will speak to your provider. This might be necessary in helping you work on needed assertiveness skills.
  • If this is a first visit, feel free to ask the doctor about prior experience with your specific condition.
  • When you talk about your pain, give concrete examples of how pain impacts you, such as sleep issues, missed days at work, family life, cooking, cleaning, sexual intimacy, hobbies—what it feels like, what activity makes it worse, how long the pain lasts.
  • If your doctor orders tests, ask about the following: what the tests are, the actual procedures, recovery time, if a caretaker is needed to provide transportation, aftercare, how to contact your doctor in case of emergency, and follow-up.
  • If you are prescribed medication: ask what it does, write down how and when to take it, ask about possible side effects, find out what to do in the event of a bad reaction, ask how to contact the doctor.
  • You may request that copies of office visit records and medical results for your personal records be sent to your home.

I’ve also developed a handout that can help you organize your questions and concerns before and during your appointment. You can download it here.

 

About Gwenn Herman, LCSW, DCSW

A social worker by training, Gwenn Herman has dedicated her career to offering much-needed hope to people with pain. Gwenn intimately understands their challenges, having lived with chronic pain for more than two decades as the result of a car accident.

Gwenn has developed an evidence-based support group model, one that enables participants to harness their own innate healing abilities, take a more active role in their health care, and improve their overall quality of life. In 2016, Pain Connection joined forces with U.S. Pain Foundation and has continued to expand its offerings.

My pain relief with cannabis

By: Ellen Lenox Smith

When it was first suggested I try medical marijuana to see if it would relieve the pain being experienced, I thought the doctor was nuts.

Back in 2007, I had never once even thought about that as an option. I had tried marijuana recreationally in college and hated the feeling of being out of control of my body. I was desperate, however, and had to consider this as a possibility because, at that time, I was not taking anything for help with two painful, incurable conditions. Since birth, I negatively reacted to most medications. I had gotten to the point where it was better to learn to live with the pain instead of the pain and a reaction to a medication. In time, these reactions were justified through the DNA drug sensitivity testing. (You can learn more about drug sensitivity testing through a past webinar, here.) It showed that I was not able to metabolize most medications, including all opiates and even over-the-counter drugs like aspirin and Tylenol.

Due to sarcoidosis in my chest, I had to be sure trying medical marijuana would even be safe, assuming I was to smoke to achieve relief. However, to my shock, the pulmonologist thought using it would be a great idea… as long as I never smoked. He warned smoking anything with my condition could be fatal. His opinion was that vaporizing would be safe to try, yet somehow even vaporizing concerned me.

I will not lie – I was so scared to even put this into my body with a lifetime’s worth of reactions. But, I was desperate to sleep, think more clearly, and improve the quality of my life. So, I decided to try converting the product into an oil form, to be taken before bed and activate while sleeping. At that time, with no compassion centers to purchase the product, I turned to the black market to get some to try. I ground the product and made the oil and took a chance that night to see what the results would be.

It turned out to be my answer!

That single teaspoon of oil allowed me to sleep the entire night something I had not done in years. I quickly found out that night that quality rest helps regardless of what is wrong. Most of us suffering in pain tend to not rest well and wake up to a day of struggling over and over along with increased exhaustion.

I have continued using medical cannabis since that first night in 2007. I have learned to grow my own product here in Rhode Island, where one is allowed to do so, along with taking on people I have been a caregiver for. I was so shocked by the results of a product I was so scared to try that I also quickly became an advocate. I figured if I was so scared and assumed I would just be high all the time, that others were also and did not realize the following: Those living with pain get pain relief using cannabis. The high will happen if you take more than your body needs or if you wake up in the night. Most nights I go to sleep and wake up the next morning – still living with two incurable conditions, but having had a night of excellent rest and some quality of life the next day.

I would like to share what this method of treatment means for me:

  • Privacy due to being taken at night.
  • Easy to travel with using a medical bottle.
  • No smell – I mix a teaspoon of oil with some form of food one hour before bed  and the activation begins
  • Unless you are like me and open with others about using medical marijuana, this method remains private; others can’t detect it on you.
  • Even if you aren’t able to grow your own, you can still purchase the product.
  • When you reach the correct dose for your body, you may be lucky like me and not need to turn to medication during the day. I find what I take at night then keeps the body calm into the next day until the next night’s dose.

Things to keep in mind when beginning treatment with medical cannabis:

  • You need to start with a much lower dose to introduce cannabis to your body slowly.
  • If ingesting, take one hour before you want to be in bed for the night.
  • The goal is to eventually sleep through the night and not wake up groggy – so each night, slowly increase the dosage until you have slept the night and not woken up in the AM groggy. If that sensation happens, don’t panic. It will wear off throughout the morning and tells you to be sure to not take the dose again but instead decrease a bit. With the right dose, you sleep and do not wake up feeling groggy.
  • Ingesting is safer for your lungs than smoking.

For many achieving their true dose can mean less need for medication during the day, because it keeps the body calm into the next day. We have found that using more than one type of night indica plant creates a great sleeping oil. For breakout pain, pay attention to which type of plant you use – sativa makes a daytime relief, indica makes a nighttime relief.

May you, too, find your safe relief with pain. We all deserve a chance for a better quality of life and this just might be your answer too!

May life be kind to you.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

U.S Pain Foundation does not endorse or recommend the use of any particular medication, remedy, product, procedure or therapy. Information in this blog is provided for educational purposes only. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your individual medical condition and the appropriate treatment.

Perseverance over pain: How a clinical trial changed one patient’s life

According to Tufts University, 37 percent of research sites do not meet their enrollment goals for scientific studies. But enrollment is critical to clinical research and uncovering potential treatment advances.

Jennie Latson, a 39-year-old from Houston, TX, has battled the pain and burden of migraine for more than 25 years. Her relentless quest to find relief led her to a clinical trial in August 2018, which changed her life.

Below, Jennie talks about her experience with clinical trials, what to expect as a participant, and why enrollment is important.

Q: How did you find out about this particular clinical trial?

A: I’ve been a regular on the migraine clinical trial circuit for the past 15 years or so. I keep an eye on the NIH clinical trials website to see if there are any new studies that look promising — and if they’re recruiting participants near me. In this case, I actually got a call from a lab here in Houston, the Texas Center for Drug Development, which was conducting a migraine clinical trial for an investigational acute treatment. I had participated in a different migraine study there previously, and they asked if I’d want to try this one. I like to think I am one of their VIP patients: I get a lot of migraines, so I produce a lot of data.

Q: Have you participated in other clinical trials?

A: I think I’ve done a half-dozen trials at this point. In all but one, the drug had no effect whatsoever. In one, I experienced vertigo so intense I couldn’t move my limbs for several hours. Which was, obviously, terrifying. I dropped out of that study, but I’ve done others since then.

Q: What were your expectations going into this most recent clinical trial?

A: My expectations were low, based on my previous experiences. One thing I did think was promising was that this was an entirely new class of drug, designed specifically for migraine. Every previous drug I’d tried was an existing drug originally designed for a different condition — depression, epilepsy, high blood pressure, etc. — and repurposed for migraine. So that’s partly what motivated me to try it, but I wasn’t expecting much, because my migraine attacks had so stubbornly resisted every other treatment I’ve ever tried.

Q: Would you recommend other people with migraine participate in a clinical trial? Why?

A: For a long time, it seemed to me that migraines weren’t getting as much attention as other medical conditions, even ones that weren’t as disabling or affected fewer people. So I felt like if anybody was doing research, I wanted to help them get good data. And because every person with migraine is different, it’s important to get as many of us as possible into these trials to see how a treatment works for the whole spectrum of sufferers.

Q: How should people with migraine prepare to participate in a clinical trial? What tips do you have?

You are taking a risk. It’s always possible that an experimental drug will make things worse instead of better. Don’t be afraid to drop out at any point if you’re uncomfortable. That’s data, too. Every trial helps build the body of knowledge about migraine: Knowing what doesn’t work can help researchers determine what does. And one day, you may find yourself in a trial with the drug that will change your life — and the lives of millions of others.

Jennie is a former newspaper reporter, most recently at the Houston Chronicle. Her work has appeared in the Wall Street Journal, the Boston Globe, Time, Psychology Today, and other publications. Jennie is also the author of “The Boy Who Loved Too Much,” a nonfiction book about a genetic disorder sometimes called the opposite of autism. She currently serves as the editor of Rice Business magazine, the alumni publication for Rice University’s Jones Graduate School of Business.

 

This post is sponsored by Biohaven Pharmaceuticals.

“Catastrophizing”: A form of pain shaming

How the buzzword “catastrophizing” stigmatizes people with chronic pain

By Gwenn Herman, LCSW, DCSW

The first time I heard the word “catastrophizing” being used to describe the pain experience on a national level was at a chronic pain lecture at the National Institutes of Health. It sent shivers through my body.

After 25 years of living with chronic pain and 20 years working with the pain community as a clinical social worker, I have become an expert in the field and what it takes to fight to take back your life from intolerable, daily pain while creating a quality of life. I was horrified at the use of this pejorative word and voiced my reaction.

The response that I received was condescending and reflected zero knowledge of what it is like living in the body of someone with chronic pain.

Medical and mental health professionals in the field of chronic pain commonly use this terminology with each other and with their clients/patients. At best, “catastrophizing” is insensitive to patients’ very rational and reasonable response to the impact of pain on their lives. At worst, it perpetuates a harmful stigma and creates yet another obstacle to effective pain management.

How did this happen?

Let’s go back and see how this term has developed since 1962.

Current Definitions of “Catastrophizing” 

Merriam-Webster: to imagine the worst possible outcome of an action or event: to think about a situation or event as being a catastrophe or having a potentially catastrophic outcome

Dictionary.com: to view or talk about (an event or situation) as worse than it actually is, or as if it were a catastrophe: Stop catastrophizing and get on with your life! She tends to catastrophize her symptoms.

Free Medical Dictionary: Exaggerated focus on perceived failures in one’s past, present, or future; associated with mood disorders, especially depression, and chronic pain.

American Psychological Association (APA) Dictionary of Psychology: to exaggerate the negative consequences of events or decisions.

History

According to an article published in 2009 [1], the term “catastrophizing” was formally introduced by Albert Ellis [2] in 1962 and subsequently adapted by Aaron Beck [3] in 1979 to describe a maladaptive cognitive style employed by patients with anxiety and depressive disorders. The article explains the theory as follows:

“At the core of their definitions of catastrophizing was the concept of an irrationally negative fore-cast of future events. Similarly, pain-related catastrophizing is broadly conceived as a set of exaggerated and negative cognitive and emotional schemas brought to bear during actual or anticipated painful stimulation. In early studies, Chaves and Brown defined catastrophizing as a tendency to magnify or exaggerate the threat value or seriousness of pain sensations [4], and Spanos and colleagues emphasized pain-related worry and fear, coupled with an inability to divert attention away from pain” [5].

After further years of academic discussion, the American Psychological Association (APA) published a study of a new Pain Catastrophizing Scale in 1995 which was described as a “valid index of catastrophizing in clinical and non-clinical populations.”

I am including the scale here so that people with chronic pain can gain insight into the tools their health care provider may have been trained to use. The basic concept appears to be that the 13 elements of the scale (most of which are experienced by every person with chronic pain) are not grounded in reality, but in the patient’s “innermost need” to exaggerate, magnify, or obsess.

Pain Catastrophizing Scale

  1. I worry all the time about whether the pain will end. (H)
  2. I feel I can’t go on.
  3. It’s terrible and I think it’s never going to get any better. (H)
  4. It’s awful and I feel that it overwhelms me. (H)
  5. I feel I can’t stand it anymore. (H)
  6. I become afraid that the pain may get worse. (M)
  7. I think of other painful experiences. (M)
  8. I anxiously want the pain to go away. (R)
  9. I can’t seem to keep it out of my mind. (R)
  10. I keep thinking about how much it hurts. (R)
  11. I keep thinking about how badly I want the pain to stop. (R)
  12. There is nothing I can do to reduce the intensity of the pain. (H)
  13. I wonder whether something serious may happen. (M)

(Note: For the items listed above, (R) Rumination, (M) Magnification, and (H) Helplessness–terms used to indicate methods of ineffective coping.)

Why Did This Happen?

Why did stigmatizing chronic pain become such an obsession in Western civilization that it led learned academics to devise scales about “catastrophizing,” rather than treatment plans to help people manage their pain and better cope with the changes in their lives due to pain? The answer lies in our society’s fundamental attitude toward pain, which is deeply rooted in stigma and dogma.

People with chronic pain are labeled with a variety of terms: malingerer, lazy, manipulative, sissy, unproductive, exaggerating, magnifying symptoms, hysterical, looking for an easy way out, drug seeker, and “broken.” Catastrophizing is just another label to add to the list.

Consequently, many people with chronic pain are informed by their health care providers that the pain is “in their head,” they need to “suck it up,” they should “learn to live with it,” and of course, told the ridiculous idiom, “no pain, no gain.”

This is pain shaming. It is a result of deep-seated stigma and bias. It is not only insulting and disrespectful to the patient, but also medically counterproductive. Shaming makes people feel worthless. Shame leads to depression, anxiety, and suicidal thoughts.

What chance do people with chronic pain have of receiving appropriate medical treatment if they are negatively labeled even before walking through a provider’s door?

The Remedy

We want health care providers to know that pain is real. Catastrophizing is just another pejorative label. It minimizes and negates the experience of living with chronic pain. The latest statistics find that 20 million individuals live with high-impact chronic pain, or pain that significantly restricts the ability to work and engage in daily activities. We have long known that chronic pain is the leading cause of long-term disability. A recent report found that at least 10 percent of all suicides in America involve chronic pain.[6]

People with pain are not overstating their despair or misconstruing the likelihood of future pain, and the consequences that will result.

We need our providers to listen to us and learn how chronic pain changes every aspect of our lives, become educated in the psychosocial stages, the grief process, recreating our lives, pacing, flare-ups and relapses, sleep deprivation, the commonality of suicidal thoughts, the importance of nutrition, effects on sexual intimacy, family dynamics, workplace issues, Social Security Disability, workers’ compensation, and countless other issues.

We need providers to realize that underneath this pain is a person who may have been just like them at one point; able to work a 40 week, have a family, get out of bed without pain, take a shower every day, enjoy hobbies, play sports, travel, and idly complain that they stubbed their toe.

We also want providers to understand that pain is pain. There is no difference between the impact of cancer pain or pain from migraine, temporomandibular joint, irritable bowel syndrome, sickle cell disease, interstitial cystitis, rheumatoid arthritis, fibromyalgia, trigeminal neuralgia, complex regional pain syndrome, peripheral neuropathy, myalgic encephalomyelitis, chronic fatigue syndrome, and so forth. It does not matter what the cause is — the pain deserves and needs to be addressed and properly and comprehensively treated.

The symptoms and severity may vary, but we all go through the same psychosocial changes in our lives. We each deserve an individual and flexible treatment plan. Pain is complex; it changes from moment to moment. One day we can go out to the store and maybe for the next week we will be flat on our backs. Alcoholics Anonymous says addiction is a “baffling disease.” Well, so is chronic pain. The provider’s job is to understand this and to work with us.

I readily concede that there is a small proportion of people with chronic pain who do receive secondary gain [7] from the pain, but that does not mean they do not have pain. It means the provider needs to spend more time with them to provide the appropriate treatment.

With all the new scientific knowledge of neuroplasticity, central sensitization, how pain changes the brain, nervous system, muscles, neuroreceptors, microbiome, and proteins, how can a medical provider say we are catastrophizing? Look at the science. Understand the whole person. Once people have lived with ten years of 10+ pain 24 hours a day for months or years, they learn about the disease, the hopelessness, isolation, depression, and the realities of a never-ending healing process.

I have not even spoken about babies born with pain and not being treated, or the undertreatment of children with chronic pain, or how people of color are subjected to unconscious bias and suboptimal health care or how veterans returning from combat are labeled “broken” and cast aside.

These unique populations face additional discrimination and misunderstanding on top of the existing stigma surrounding pain.

We are complicated cases that need time from our providers and their active listening without judgment.

Pain Shaming – Language Matters

Language matters. Pain literacy matters. The use of the terms “maladaptive behaviors” and “catastrophizing” both have negative connotations that minimize a patient’s pain and negate the experience of living with chronic pain. The terms are essentially pejorative and judgmental. They stand in direct contradiction to the concept of chronic pain as a biopsychosocial disease, implying a degree of blame on the part of the person with chronic pain. It would be best to banish these pain shaming terms from the medical lexicon.

Creating a New Normal: Reinventing-Recreating One’s Self

What really needs to be emphasized instead is an understanding of the biopsychosocial concept of living with chronic pain. It affects every aspect of a person’s life and the loved ones around them. It is a disease of the nervous system that changes with time. Terminology is just terminology, but “creating a new normal” needs to be the goal of treatment. This entails building on the patient’s strengths and teaching them how to cope with their disease and develop a quality of life in the body that they have now. Pain is traumatic, and that trauma changes the body drastically. When a person learns how to live in their body as it is, then the healing process begins, and the risk of suicide decreases. Instead of attaching negative labels and starting from that premise, the provider should be saying: “Your pain is real, and your emotions surrounding it are valid. Let’s devise an individualized treatment plan to deal with it.” Having an educated, knowledgeable, compassionate provider can save us years of suffering and searching for help. It could even save lives.

References:

  1. Quartana, Campbell & Adams, Pain Catastrophizing: a critical review, Expert Review of    Neurotherapeutics Volume 9, 2009
  2. Ellis A.  Reason and Emotion in Psychotherapy. Lyle Stuart; NY, USA: 1962.
  3. Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive Therapy of Depression. Guilford Press; NY, USA: 1979.
  4. Chaves JF, Brown JM. Spontaneous cognitive strategies for the control of clinical pain and stress.  J Behav Med. 1987;10:263–276.
  5. Spanos NP, Radtke-Bodorik HL, Ferguson JD, et al. The effects of hypnotic suggestibility,     suggestions for analgesia, and utilization of cognitive strategies on the reduction of pain. J Abnorm Psychol. 1979;88:282–292.
  6. Chronic Pain May Contribute to Suicide: In this study, researchers led by Dr. Emiko Petrosky from the U.S. National Center for Injury Prevention and Control analyzed data on more than 123,000 suicides in 18 states between 2003 and 2014. In 8.8 percent of those suicides, there was evidence of chronic pain. And the percentage increased from 7.4 percent in 2003 to 10.2 percent in 2014. (Sep 12, 2018.)
  7. Secondary Gain: in psychoanalytic theory, the advantage derived from a neurosis in addition to the primary gain of relief from anxiety or internal conflict. Advantages may include extra attention,   sympathy, avoidance of work, and domination of others. Such gains are secondary in that they are derived from others’ reactions to the neurosis instead of from causal factors. They often prolong the neurosis and create resistance to therapy. American Psychology Association Dictionary of Psychology.

 

About Gwenn Herman, LCSW, DCSW

A social worker by training, Gwenn Herman has dedicated her career to offering much-needed hope to people with pain. Gwenn intimately understands their challenges, having lived with chronic pain for more than two decades as the result of a car accident.

Gwenn has developed an evidence-based support group model, one that enables participants to harness their own innate healing abilities, take a more active role in their health care, and improve their overall quality of life. In 2016, Pain Connection joined forces with U.S. Pain Foundation and has continued to expand its offerings.

 

Mind you

By: Mia Maysack

I have never said that mindfulness fixes or cures, that it is easy, looks the same for everyone, or that it should even be referred to by that term.

It would be incorrect of me to make the claim that anything erases discomfort and all symptoms attached to them. Yet instead of exploring this concept for themselves, many want to attack it or remain defensive without genuinely committing, as if tension assists them in feeling better than letting it go would.

Pain is indeed very real, that has never nor is it ever something I do not understand, respect, acknowledge, or honor. But there’s more to it because of the correlation between the state of our health and overall biochemistry exists in every human being—some of which is entirely out of control, others we have more control over than we may think or believe.

Having dedicated my life to the practice of mindfulness has proven helpful to me. Anyone I know who has immersed themselves in the practice of mindfulness, to whatever extent felt authentic to them, will absolutely declare the same.

That’s what any aspect of treatment or management of a condition (or life in general) boils down to doing what’s best for you, as the individual having the experience. While so much complexity stands between us all relating on a physical level, we are all still humans sharing the emotional, mental, and spiritual burdens alongside one another, and as science continues to advance, it’s becoming more difficult to deny the direct connection between emotional wellbeing and overall health. Both could not only be considered independent rather interdependent as well as dependent upon each other.

Don’t believe a word I say, in fact—I humbly welcome you to doubt it, however, I also invite you to try it out for yourself.

To have made it through, my self-talk is essentially a new language—for example, concepts of “positive” or “negative” forget it! Labeling things isn’t necessary, but surrendering while cultivating acceptance and a sense of gratitude is.

What I’d refer to as an “unhelpful” state of mind, doesn’t improve anything for anyone. But allowing ourselves to feel through all of this is a true part of healing. It can help us regain a sense of inner security and confidence, restore empowerment, and provide an enlightened sense of clarity that ensures we’re operating from present moment authenticity as opposed to from a place of past or future.

There she goes again, what do you mean “healing” Mia?!

I know, right…

Look, I’m not ignorant to the fact many endure situations that have been/continue/are expected to be life-long—if the ideas of reclaiming quality of your life, prioritizing your own self-care, calming your nervous system, and developing a kind, compassionate, forgiving, nurturing relationship within do not sound helpful to you, there’s absolutely nothing anybody else can do for you.

Another offense could be taken when it’s suggested that we remain “here,” which seems like a cruel joke to someone who is in pain, experiencing illness, or both. So we need to lose misconceptions that somehow the skill is intended to change what’s happening—this is not magic, it is about a shift in our own response to what is going on, to make sure you are not being carried away by or with it.

When attempting to convey these points in the past, some feel the need to declare their pain as being real. I’m not sure who they’re trying to convince, because I feel them. The tone signifies the assumption that because I’ve made it to this point in my healing journey, somehow that has lessened the reality of still living in real discomfort myself, though maintaining a sense of sanity better than I ever did as a direct result of these tools. You can disagree with it and hate it all you want, it doesn’t change my truth nor those whose lives have improved beyond recognition after putting in the work for themselves. We can all make the decision to do the same.

It isn’t easy but would you really try to tell me that anything about living this way is?

Most who downplay, minimize, downright mock, or disrespect these concepts- haven’t dedicated their lives to the disciplines. At a point, I was one of them, so I know if you’re not ready to receive these words (yet) then you simply won’t. But that doesn’t change the fact they’re here and more by the day are adding momentum to the credibility of inward capabilities, as we internalize the drain of COVID-19 among other pandemics throughout our world. Now is as good of a time as any to develop more tools to continue building an identity not merely rooted in survival, but tapping out of fight or flight mode to begin to thrive in ways you’d never imagined.

Resources on mindfulness:

Why mindfulness is a superpower

Getting stuck in the negatives (and how to get unstuck)

Introduction to the gate control of pain

Meditation: radical acceptance of pain

About Mia Maysack

Mia Maysack is a chronic pain warrior, U.S. Pain Ambassador, Support Group Leader, and Volunteer Patient Advocate. She also was recently featured in the INvisible Project: Migraine 4th Edition. Along with writing for Pain News Network, she is the Founder of Keepin’ Our Heads Up and Peace&Love Holistic Health/Wellness.

The importance of role models

By Angelica “Heidi” Brehm

Before my migraine disease caused me daily pain and disability, I was an elementary school teacher. I intentionally taught my students about people who shared their backgrounds, challenges, and differences who managed to dream big and accomplish amazing things. I integrated these role models throughout my curriculum because I believed it would increase my students’ success. So why did it take me so long to search for role models for myself? Why didn’t I seek out examples of people with migraine, chronic pain, or other life-altering challenges who lived successful lives? Maybe it’s because it was hard to believe that something so basic could have such a powerful effect on my own success.

When I was struggling to come to terms with a life that included nonstop pain, I didn’t see role models. The people I worked with pushed through their health problems and managed to keep their jobs, but I couldn’t. Growing up, I was exposed to only a couple of people who had health challenges and they were able to work, raise a family, and exist in a way that seemed very “normal” to me, but my life didn’t feel “normal” anymore. I didn’t know anyone who needed Social Security disability or Medicare to survive, but I did. Everyone in my social circle seemed able-bodied and functional, but I wasn’t. I felt very alone.

With help from therapists and encouragement from family and friends, I expanded my social circle! I began to seek–and still actively try to find people with similar conditions to look up to. I am grateful to the U.S. Pain Foundation, which has been a generous source of many of my role models. They are featured in its INvisible Project publications; attend and lead its support groups, webinars, and trainings; are honored as Pain Warrior of the Month; and work as USPF staff. I am amazed by how easy it has become to find role models and how important they are to my happiness.

Role Models

  • Designate Value 

By sharing experiences similar to mine, in blogs, podcasts, summits, support groups, and advocacy events, role models show me that my voice and needs matter, too. We may have invisible disabilities and challenges, but we don’t need to be invisible. Just like them, I deserve to be seen, heard, and supported.

  • Inspire 

When we aren’t in a pandemic, I volunteer at my local children’s hospital. I have the privilege of meeting amazing patients who smile, laugh, and are kind even though they lack the maturity to fully understand their health challenges and have virtually no control over their surroundings or treatment plans. As I observe them approach their days with grace and bravery, I can’t help but think that if they can do it, maybe I can, too. I find myself channeling their strength and positive energy as I go about my own life.

  • Bust Myths and Excuses 

I create rules in my head about life limitations I must accept, but my role models refute these rules. When things seem impossible for me to achieve, they show that they’re within my grasp.

I used to think that because of my pain and other symptoms I would not be able to perform valuable work. I didn’t believe that I had the stamina or ample brainpower to be able to contribute to society. Then I read A Sudden Illness by Laura Hillenbrand. Laura researched and wrote the award-winning books Seabiscuit and Unbroken along with numerous other articles, from her bed while severely disabled by chronic fatigue syndrome. There went my excuse of not being able to fulfill career ambitions because of health conditions. Laura proved that it was, in fact, possible.

It is true that many relationships fail due to the pressures of chronic pain. But I took that reality and mentally blew it up into the belief that I would never be able to successfully date or have a positive romantic relationship. In the last several years, however, I’ve met many people with health challenges who have wonderful relationships with their significant others or are actively dating and meeting wonderful potential partners. It isn’t easy, but it is possible. The myth that I would have to be alone forever is constantly being busted by my role models.

I also struggle to fathom how I could be a good mother. It feels like I spend almost all of my time focused on taking care of my physical and emotional needs. I don’t know how I would be able to properly care for children, but I have role models who do it every day and prove that this, too, is possible.

  • Provide a Road Map to a Full Life

I can sometimes feel like a victim at the mercy of a disease that causes my life to be limited and incomplete. I find role models, however, that reveal strategies and resources they use to do the activities that they aren’t willing to give up.

Being able to do volunteer work is very important to me, but as my migraine disease progressed it became more and more difficult to find volunteer roles that I could tolerate. Thinking it would be a good fit, I pursued volunteering at a children’s hospital, but my hopes were squashed when I found out parking wasn’t available for volunteers and the street parking had too short a time limit. I’d have to take the bus, which would extend the amount of time I would need to be active and expose me to noise and smells that would increase my migraine symptoms to the point that the activity was no longer tenable. Luckily, I remembered an article I had read by Kerrie Smyres, an INvisible Project contributor and founder of The Daily Headache, about how getting a disabled parking permit had made her life less disabling. Maybe it could for me, too. I applied and qualified for a placard which allows me to park close to the hospital without a time limit restriction. Kerrie showed me how to solve my problem so I could do something I love.

It wasn’t until I watched an interview with Eileen Jones, the founder of Miles for Migraine, that I decided to apply to Headache on the Hill, a USPF-supported event where participants ask Congress to address the needs of people with chronic headache disease. I wanted to attend, but couldn’t conceive of how I would be able to manage all the migraine triggers to which the experience would expose me. Eileen shared that the event was hard for her too, so much so that she needed to go to the Capitol Infirmary to rest during one of her visits, but it was worth it. Learning that there was an infirmary where I could recover and that I would be surrounded by other people who have or treat migraine, who could help me if I required it, gave me the insight and confidence I needed to apply and participate.

I used to sing “This Little Light of Mine” with my second-grade students. I loved the song’s message of determination,  the proclamation that no matter what life throws at me, I will be my best possible self and let my light shine.

When facing pain and hardship, it is easy for the light inside that represents our enthusiasm for life, our sense of purpose, our independence, and our feelings of self-worth, to dim or even sputter out. Some days, when I look inside myself, all I see is darkness, excuses, and roadblocks.

Then I interact with someone special, energized, and shining bright. I see her climbing over roadblocks and I see others making their way around them. I see people carving, pebble by pebble, an opening through stone walls and suddenly there is light in the darkness, the excuses fade, and the roadblocks are transformed. They are still challenges, but I believe it is possible to overcome them.

Role models are so important because they help me find the light inside of myself and show me how to increase its brightness.

Role models help me to SHINE.

Angelica “Heidi” Brehm lives in the San Francisco Bay Area. She developed migraine 28 years ago and has since experienced varying degrees of pain and other disabling symptoms. When not managing her disease, Heidi enjoys hiking and volunteering, including as a U.S. Pain Foundation advocate and ambassador. Though her life has been impacted by chronic pain, participating in advocacy, taking part in educational events, such as USPF’s webinars, and connecting with peers have helped her find new purpose, hope, and joy.

Tips: medical marijuana during the pandemic

By: Ellen Lenox Smith

It is tough enough to be able to afford medical marijuana because it is not reimbursed by insurance. And now, we add the horror of this pandemic, leaving so many financially compromised. However you obtain your medication, you should do what you can to protect yourself and your health.

Here are some suggestions to consider for still obtaining medical marijuana and keeping yourself safe.

  • Medical marijuana should be defined as essential in your state, just like any medication.
  • They should be offering delivery and/or curbside pickup to those unable to travel to prevent the need to enter the distribution centers.
  • Online ordering is offered in many states. This allows you to order online or over the phone to arrange for either the curbside pickup or delivery.
  • Check online to find out what is available to you in your area.
  • If you need to consult with a medical provider, many places allow you to skip face-to-face visits with medical providers for renewals or even new card applicants using telemedicine.
  • Although many centers do offer financial aid programs to those that qualify with SSI and SSDI, more help needs to be happening during this pandemic.
    • Here in Rhode Island, where home grows are allowed, along with being a caregiver for others, we instituted a donation program. Growers are temporarily donating so those in need continue getting their medication.
    • You can also consider offering to run a fundraiser to raise money to help support those that can’t afford to purchase during the loss of revenue during the pandemic. There are those who received a stimulus check but have not had a decrease from their finances that might be willing to remember those in more need and share a portion of their check. These donations are being converted to vouchers to be honored to obtain medication at the distribution centers. You would need to work directly with a center to get their approval to work with this program.
  • If you need to physically go into a dispensary, social distancing should be enforced.
  • Many dispensaries have even implemented special hours for the elderly and those that are at higher risk during the pandemic. Check to see if your local dispensary is among those that offer this service.

Many states are doing a good job trying to ensure that patients still have access to their medications and are continuing with the licensing process during this pandemic. If you have questions, be sure to contact your Department of Health and also the distribution centers where you purchase your medication. Remember, the last thing you should have to do is to stop your medical marijuana due to financial complications. You deserve to have continued access if this is helping you with your medical issues. Reach out and share your concerns and issues and see what assistance they can offer to help you. Feel free to be in touch if we can be any help with guiding you if your state is not making an effort to help patients in need during this horrific pandemic.

May life be kind to you.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program and is part of the Oversight Committee for the Compassion Centers in RI. She is active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

The picture of perfection

By: Michaela O’Connor

So many people with chronic illness look back at their lives prior to their illnesses with such nostalgia, pride, and infallibility. It is as if their lives were the picture of perfection with nothing and no one to hold them back. They forget the embarrassments, shortcomings, and utter failures they previously experienced. In their eyes, the moment that their pain began was the moment their lives of perfection ended. In the 14 years since my trigeminal neuralgia began, I am extremely guilty of looking back at my “flawless” life and praying for the pain to end so I can return to that perfect life.

It was only recently that I realized my life was far from perfect when I was diagnosed with trigeminal neuralgia (TN) at 19 years old. I was finishing my freshman year of college and my type A personality had the next six years of life planned to a T. I was going to take extra classes for a double minor and spend the fall quarter of my junior year at the University of California in Washington, D.C. I had already joined clubs that would look “perfect” on my USF Law School application and was looking forward to a summer of partying with friends since I would have to be 100 percent focused on school in the fall.

My plan allowed no room for error or deviation for any reason. I had goals to accomplish and people to impress. As I look back, I see a young, naïve girl focusing on success instead of happiness. I was more concerned with achieving my goals than enjoying my life. In fact, I had lost sight of the most important things in my life. My life before my illness was very clearly not flawless or perfect.

Living with chronic pain has completely changed me, mostly for the better. I would give almost anything to end the pain; however, I will never give up the person I have become as a result of my TN. I have realized that, much like beauty, perfection is in the eye of the beholder. Perfection does not come from success, approval, or lack of pain and struggle. It comes from living your life to the best of your ability under the circumstances you are given and loving the life you have. Perfection is unique to you and it is up to you to find your ‘perfection.’

My perfection comes in many different forms and continually changes. My perfection over the past 14 years has included my daily battle and survival against TN while doing my best to live my life despite the pain. My idea of perfection is my loving, endlessly supportive family, laughter, happiness, and the little things that mean the world to me. I see perfection in the beautiful eyes of my nieces and nephews, their “squeeze hugs,” and hearing them yell “Auntie K” as I walk through the door. I see perfection in my siblings and their significant others when they plan things indoors so I can join them, when they lend me a shoulder to cry on, and as they hold my hand and make me laugh when they know I need them. I see perfection in my parents’ faces when they come home from work to see me smiling instead of crying in pain, in their unconditional love, the unwavering strength they provide to me, and the times we are able to forget it all and just enjoy ourselves together. I find perfection in my loving extended family and friends who have been endlessly supportive throughout my journey, and the love they provide my family and me with day in and day out.

Most importantly, I see perfection in myself: trigeminal neuralgia and all. I see a sufferer, fighter, and survivor all in one. I see a 33 year old who has found true meaning, beauty, and importance in her life. I find freedom in the barriers of chronic pain that I am able to break down. I see beauty in the windless, sunny days that I am able to enjoy without my snow hat and scarf.

I see happiness in the little things that are insignificant and unnoticeable to most people, but that mean everything to me. I find perfection in my life now as I try to raise awareness for those suffering from chronic pain. I see perfection in the meaning I have found in my life, and the person I have become as a result of my TN.

Am I perfect? Absolutely not, and I never will be, but, I have found meaning, beauty, strength, and happiness in the life I have led over the past seven years. I am no more perfect now than I was before my TN began, but I have found ‘my perfection’ and that is something that no illness or person can take away from me.

While I may still be nostalgic about my life before my TN, I no longer pretend it was perfection. I don’t look back and long for the life I thought I lost to TN. I have my “perfect” life despite my TN.

Michaela O’Connor is a U.S. Pain staff member and chronic pain warrior and advocate. In 2013, she was chosen to be a participant in the INvisible Project, which led to her becoming a U.S. Pain Ambassador for the state of California. It was through this role that Michaela became an official part of the U.S. Pain’s team. Michaela graduated from the University of California at Davis in 2009 with a BS in Political Science and a double minor in History and War and Peace Studies. She is the proud aunt to her three nephews and four nieces, with whom she spends most of her free time. Michaela resides in Northern California.

Shelter in place? I’m used to staying at home

By Melinda Sandor

Being stuck at home is new to many people. But I started sheltering in place in 2013 when I was diagnosed with Lyme disease. I spent three years on IV therapy, seven days a week, and walked only to the bathroom and back. The years after IV therapy were just as rough.

I required assistance with everything. The pain unbearable–going to the bathroom, taking a shower, walking down the stairs were so difficult. Mentally I struggled, too, trying to remember  to make appointments and phone calls I needed to. I couldn’t even handle putting my medicine in the case each week without mistakes. I felt so much guilt.  I thought my husband would leave me as soon as he could, or maybe he would have an affair. Why couldn’t I keep up with showering and fixing my hair? When was the last time I wore makeup?

But I have learned to overcome my guilt by dealing with facts, not fears, and knowing I can handle with whatever reality throws my way.

In addition to Lyme disease, I’ve been diagnosed with fibromyalgia, cognitive disfunction (which includes lack of balance), and dementia. Dementia is the real kicker. There are a host of other ailments I suffer from, and I’m sure I will have more as the years pass. I was told early on that Lyme would cause problems that seem unrelated for years to come because there is no cure and my immune system remains compromised. This past month I found that to be true again when.

I was diagnosed with a new immune disorder, hypogammaglobulinemia. Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi. Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system.

This makes the COVID-19 pandemic especially scary for me. I get stressed out when I watch more than an hour of news a day, or see people not wearing masks.

In general, though, I’m very used to having to stay at home. I quit driving years ago and have only driven a handful of times in recent years. It’s not that I couldn’t drive, but my husband came along to take notes at appointments since my memory is not what it used to be. Don’t get me wrong. I miss the independence of driving without my husband having to take off work. I also miss being able to see my hairstylist, getting a manicure, and finding great spots for taking photos.

I have to get out of the house for my mental health, at least a little bit, regardless of my immune deficiencies. We still go for a Starbucks run as often as possible. We have a whole sanitation process down, including wiping down his mask, credit card, steering wheel, and both of the top of our cup to the bottom. We take all precautions when he brings groceries in and packages, we wash our hands immediately, and wash again after putting everything away. He doesn’t want me to get sick, and I know he does everything possible every time he leaves the house.

I’m ready for this to pass and it will pass, but for now, I’m staying calm and entertained indoors as best as I can. I hope you can do the same.

Melinda Sandor was born in Dallas, TX, and has lived there her whole life. She’s studied Journalism, Art and World History. Traveling and photography are her two passions. She’s married with with two four-legged children, and is a Texas Ambassador for the U.S. Pain Foundation.

Letter of hope to parents of medically compromised children

By: Ellen Lenox Smith

As I celebrated Mother’s Day, I received an email from our youngest of four sons that brought me to tears. He thanked me for always being there when he confronted a number of very serious medical issues during his childhood and early adulthood. He also shared that now as a parent himself, he hopes he never has to face watching the pain and difficulties we faced raising him.

Our youngest was born a month early on Christmas Eve and immediately started life in special care. It was first diagnosed that he had inherited my father’s glycogen storage disease, type IX. But, he always had trouble with low oxygen levels and spent a lot of his early years in pain and feeling poorly. We searched for answers to help improve the quality of his life. All parents realize very soon in the parenting journey that watching their child suffer without being able to secure effective medical treatment is truly heart-wrenching.

By his freshman year of college, when no one in the dorms wanted to sleep near his room, due to loud snoring, he finally called to say it was time to seek more help. In time, it was discovered that he had an enlarged lingual tonsil. Doctors in Boston attempted a laser treatment to reduce the size of it. However, our son reacted to medications, developed rashes, and was just miserable. After healing, there was no improvement with his oxygen levels that were still only in the high 80s.

In time, it was decided to try moving his jaws forward to create an open airway. What was supposed to be a six-hour surgery turned out to be 11 hours when twice they thought they were done and laid him back, the plates and screws designed to hold his jaw in place fell out. So, when we finally saw our son in the ICU, his mouth was wired shut in hopes he could heal. Mind you, this was a young man with constant nasal congestion, so to only breathe through his nose meant we were on ICU duty around the clock, to constantly suction his nose to allow him to breathe. I spent the days in the hospital and my husband took on nights. Meanwhile, our three other sons lived around this chaos of life disrupted with us.

Sharing this story brings back the horror of what we all went through. There is nothing more heartbreaking than to watch your child suffer. You would do anything to have it be you instead of them.

So where is the hope in this story? Believe me, it is loaded with hope for you all as you read what happened to this young man’s life. He proceeded to graduate at the top of his class in high school, was an outstanding swimmer on a swim team, taught himself many instruments, and in time created a band, loved art, and moved on to a double major at Brown University. This was the same young man that rarely felt well for years, yet he found the inner strength to live life anyway. Today, he is very happily married, father of two precious little girls, and owns a business that utilizes his art and musical skills.

What we have gained as parents is a young man that has made us so proud since, he learned at an early age, due to his difficult challenges, to appreciate and value life. We receive almost daily calls, photos, and videos of his children growing up. He gardens in his backyard in NYC, cans and ferments food, and just loves to cook. He does not take life for granted and is so sensitive and compassionate to our struggles with my two incurable conditions and twenty-five surgeries. He feels like not only our son but a very special friend in our lives.

If only we had had a crystal ball during the difficult times to allow us a glimpse into his future to see how this young man’s life would unfold from those horrific years of medical issues, we would have handled the stress better, but that wasn’t in the cards.

So, as you might also be experiencing that helpless, exhausting, heartbreaking feeling of just wanting your child to have a normal chance at life, I hope this story can bring some hope to you. Do your best, be their voice but also know in time, they need to learn to be their own voice too. Our son declared after the jaw surgery that he was done with any more repairs and we allowed that to be his choice. He was becoming an adult and we needed to let him make his choices. He found ways to alleviate pain through yoga and meditation and went on to his dream career which he adores. He learned to eat well and take exceptional care of himself and, now, his entire family.

Hold on to hope and may your child’s story be something you, too, can look at with the knowledge that those who face extreme challenges in life often develop exceptional physical and emotional strengths. We all need to learn to find the good and positive in the difficulties we are given.

May life be kind to you today, and every day.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

 Poor weather = tough emotions

By Ellen Lenox Smith

It sure would be easier to be home isolating with the consistent sun shining down. Instead, here we go again with another day of mist, rain, or clouds.  Here on the East Coast, the weather we have had to cope with has included only a few sunny days since the pandemic. When the sun hits, the world seems safe, beautiful, and full of hope.

When the weather switches back, hope is harder to hold onto, and the emotions seem to dip.

When we wake up to the sun, the world is shining and bright and so are my emotions. I am filled with hope, fresh ideas, and thoughts of the future. We get to go outside and when able to, we walk, work in the garden, and even just lay down with the sun on our faces. It seems to represent happiness, and it is such a joy to appreciate this.

Lately, when those lousy days hit, I feel like a totally different person.

I have always worked hard to try to be an upbeat, hopeful person despite living with two incurable conditions, 25 surgeries, and life always on the edge. But somehow the lousy weather makes it harder and harder to accomplish this positive attitude on these rough days.

I never noticed this transition as much as I am observing during the pandemic. Clouds, mist, and rain mean being inside with limited activities and more isolation than ever. Years ago, walking in the rain and snow used to be a quiet, spiritual treat. It was me and nature together, while many would not consider venturing out.  But now, walking needs to be on nice weather, due to limited shoes to use and safety issues after all the reconstruction surgeries.

So, inside I must stay and energy is expended searching for some new idea on how to use my isolated time inside.

Dear sun: please decide to grace us with your presence!

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

Mindfull

By: Mia Maysack

How are we able to go about pursuing or even simply believing in the concept of wellness, while attempting to cope with the opposite of being well?

At a physical therapy appointment a few years back, I met with a provider who used to experience debilitating pain himself after an accident. He’d since become pain-free and had a certain arrogance, as if he’d cracked the code, so I looked forward to working together.

One day, we were discussing the concept of positivity and I remarked “I had that covered” because I am a “positive” person. He looked me right in my eyes and replied,”No, you’re not! You are not living that!”

First of all, who is this guy to tell me anything about myself or what I’ve been through as if he knows me? Right? My inner Gotti was almost released on this man.

I haven’t seen him since but despite the initial offense, I’ve since grown to actually agree with him.

Having been bombarded with these ailments beginning as a kid, a “positive” attitude was something cultivated in order to simply make it. “My head hurts, but.”

It didn’t take a rocket scientist to figure how fortunate I was to have survived a near-death experience back then, even though as a result, each day has hurt ever since. I always referred back to the thought of being alive in pain rather than feeling nothing six feet under.

I can take deep breaths and focus on “positive” thoughts until my cheeks crack from smiling but, unless I’m fully internalizing and embodying the reality of what it means to be in that state, the inner barriers won’t be broken down and my ability to check out of fight or flight mode is inhibited.

Coming to the realization that I literally hadn’t experienced rest/digest mode before, not only stunned me but also permitted a very deep sense of self compassion I hadn’t achieved up until that point. So many years had been devoted to fixation on the problematic areas, somewhere along the line I’d lost comprehension that I’m still an entire being. It’s not that the traumas endured were cause or cure to pain, but all the tension is something carried, nonetheless.

The first thing to take into account is that wellness doesn’t necessarily literally mean being well. In fact, as someone living with two decades of intractable pain and chronic illness–though throughout the years my discomfort has heightened drastically– my spirit, mind, frame of thought and perception, as well as outlook, has never been better.

This is the direct result of a lot of inner work.

Each person’s definition of this terminology and the way it looks in their lives is different. We can alter things as we go- however will be most supportive- managing moment by moment.

Some days we fall apart, others we can conquer in our own ways. Given what is in my control, what is best for me in the here and now?

The future or the past shouldn’t take up too much of now. We’re able to conserve energy by remaining present and taking in what is most helpful.

About Mia Maysack

Mia Maysack is a chronic pain warrior, U.S Pain Ambassador, Support Group Leader, and Volunteer Patient Advocate. Along with writing for Pain News Network, she is the Founder of Keepin’ Our Heads Up and Peace&Love Holistic Health/Wellness.

Four ways to get the most out of your telemedicine appointment

By: Janet Jay

With the explosion of COVID-19 and widespread social isolating, many people are using telemedicine appointments for the first time. “Telemedicine” may sound intimidating, but really, it simply means conducting your appointment over the phone or an online videoconferencing service. Whether you’re directly looking for a telemedicine appointment or have been offered one as a substitute for an in-person consultation, you should contact your insurance company to make sure they cover it and if there are any out-of-pocket costs.

Here are some easy ways you can prepare to make the most of your next virtual appointment.

1. Prepare in advance

Telemedicine appointments sometimes seem to go faster than they would in person– without travel, time in the waiting room, and interactions with nurses and office staff, you have less time to get your thoughts in order before jumping right into your interaction with the doctor. You may be tempted to chat about personal items or the current crisis, but make sure you leave plenty of time to focus on your health needs. Prior to your appointment, sit down and write out what your goals are.

Ask yourself these questions:

  • Why did you need to see the doctor?
  • Are there any symptoms that you need to mention?
  • What questions do you have that you need to see addressed?
  • Do you need to get or discuss test results?
  • Do you need to renew a prescription or have a medication explained?

Putting these all on paper will help you organize your thoughts and make sure that you don’t miss mentioning anything important. You also may want to have the same information ready that you would at an in-person appointment, like your current medications and allergies.

2. Sort out your tech

If you’re using a videoconferencing program, make sure it’s installed and working (and that you know how it works)! If you’ve never used it before and aren’t sure, make a test call and/or research the program online before your appointment. Make sure the computer is plugged in and has sufficient power to last through the appointment. You should also close any other programs or tabs that may slow down your computer or your internet connection. Put the camera at eye level and make sure your appointment area is well-lit.

3. Get ready

Set a timer for 10 minutes before your appointment time. Put the dogs outside, shut the cat in another room, tell the kids to play quietly. Get your notes and the list of things you want to address in front of you. If you have pictures that you want the doctor to evaluate, sort them into a folder together, and have it ready. If you plan to email them, spend this time drafting the email and getting it ready to press send. You want to make the absolute most of every second of the doctor’s time– you don’t want to be scrolling through a thousand photos on your phone or having to double-check an email address while they’re sitting there. If you use an app to track symptoms on a daily basis, make sure to have that data open or easily available to share, too.

4. Make the most of your time

Once your appointment begins, pick up your list, and start moving through it. If you have pictures or other supplementary materials, make sure your doctor knows from the beginning of the interaction that you are sending them for review.

You might want to take notes of what the doctor is saying. While it’s easy to jot notes down on the bottom of the list you made, with a video or phone interview, you sometimes have the choice to record the interaction and review it later.

After you hang up: relax! You’re already home. So give yourself a treat for making the most of your telemedicine appointment!

Janet Jay has been dealing with chronic pain and depression since she was in early high school. Despite these challenges, she’s spent over a decade working in communications and freelance journalism, where she has been published in outlets like Maxim, Vice Motherboard, and Popular Science. She’s also a writer for U.S. Pain Foundation and the INvisible Project.

Pain is inevitable, suffering is optional: A meditation on mindfulness

By Mia Maysack

A loved one recently used the word “suffering” while expressing their thoughts on my situation.  Yes, it does feel like agony at times, but I no longer embrace that word as a part of my personal terminology, therefore, I affirm that by making it known to others.

How can anyone know what our wants/needs are unless we convey them?

Furthermore, how do we go about conveying something we ourselves might not even know??

This next part sounds cliché, but: it all starts with us.

We know that our emotions/thoughts melt into one another and that both have equal capability to impact how we feel overall…

For this reason, it’s imperative for us to consistently reflect upon how we’re approaching our existence.

If we have it stuck in our minds that a particular treatment approach is not going to or won’t work,  that there’s nothing we can do to improve our situation, or perhaps we succumb to the illusion that it’s hopeless—our bodies internalize this. So my question is: why contribute to anything other than what feels better?

Sometimes, we need our moments—I’m throwing a temper tantrum and I couldn’t care less what anyone else has to say about it!

Alright…  Breathe. Take your space.

Then rise up, once again. We know this won’t be the last time that has to happen…

Another word I no longer identify with is that of “patient”.  To me, that ended up feeling as though I were the smaller person in the room—looking up to others to tell me what’s best for myself. I guess I learned in the moments that I did desperately hang on to the words of professionals, yet was led astray or cut short, my answers were and had to be found within.

I’ve been quoted as saying: “The first few times someone introduced the concept of mindfulness to me, the only imagery I had was of punching them in the face”.

I’d attend these clinical support groups, where the surface of our chronic pain life was skimmed, but not dissected from a place of authentic understanding.

Don’t get me wrong—I’m grateful to have had this resource,  there are definite advantages to PowerPoints based out of a textbook… but that’s not the whole story.

Regularly, I’d politely interrupt the instructors to provide them with different perspective.

It’s not that I disagreed with things the teachers would say, it is simply they’re only informed to an extent—because if ya don’t got it, you can’t get it.

This led me to the discipline in learning balance between what’s presented and how I may choose to take or internalize it.

At a follow-up appointment, I sat there to humor them, hooked up to a machine that demonstrated my heart rhythm,  as if I hadn’t ever ran an entire floor of patients, on my own, in a past life as a nurse.

In that moment, the provider told me to “purposefully think of something upsetting,” so I remained on that frame of thought—the grief already coexisting within me gets reawakened each time the memories replay in my head of who I once was or dreamt I could be.

Of course, this clarity is only possible when my head isn’t hurting as badly as it can, but oh, MIND you, it’s always hurting!

The provider pointed out on the screen that my blood pressure had increased because there’s an emotional connection and response to everything within our bodies.

I was re-heartbroken because there’s just about nothin’ worse other than having to live like we do in the first place, but then leaving an appointment feeling even more wrecked then you did upon arrival leaves you low.

I was so over all of it, and thus took a hiatus from anything in relation to medical “care” for quite a while. I made the decision to incorporate my own background, along with a passion for healing, and began venturing the route of holistic health.

When I’ve proclaimed my approaches to energy healing, breath work, yoga practice, mindfulness, meditation as being more helpful than any traditional or mainstream attempt—there has been ridicule because it’s internalized, as if I’m suggesting it as a cure-all or quick fix.

The inner reflection, release of traumas, acceptance of challenges—all while managing very real pain as best I can with very little relief-—equates to the absolute most difficult job I’ve had or thing I have ever done.

Nonetheless, one of the most monumental moments throughout my pain journey has been the realization that I am not my pain—what I’ve experienced is entirely different than who I —there is a possibility to coexist with what I go through, as opposed to it defining or limiting me.

About Mia Maysack

Mia Maysack is a chronic pain warrior, U.S Pain Ambassador, Support Group Leader, and Volunteer Patient Advocate. Along with writing for Pain News Network, she is the Founder of Keepin’ Our Heads Up and Peace&Love Holistic Health/Wellness.

Making peace with a rollercoaster of emotions

By Michaela O’Connor

I’m experiencing every emotion in the wake of COVID-19.

I live with three autoimmune diseases, am currently taking immunosuppressants, and have a restricted lung capacity. I’m a high-risk patient, and have been for the last 13 years of my life.

I began self-quarantining over two weeks ago. It was a precaution I felt necessary due to the contagious nature of the virus. I spend a lot of time at home anyway; I work from home, I have had groceries delivered countless times, and I workout in the spare bedroom daily—so this wasn’t far from my norm.

Earlier this week, a shelter-in-place order was given for my county. “Shelter in place” means that you are required to stay home unless you need to leave for “essential” activities and work. You are also supposed to stay six feet away from individuals that you do not live with when you are at work, the grocery store, the pharmacy, etc. As things went from quarantining for my own protection to shelter in place, my emotions have been running wild. Honestly, I’m OK with that.

I have laughed at the never-ending memes about social-distancing, parents homeschooling their kids, and the lack of toilet paper.

I have cried at the beautiful acts of kindness and humanity that have resulted despite these difficult times.

I have been angry that individuals are using this time for social gatherings rather than staying home and being conscious that their actions may have a direct impact on so many people’s lives.

I have marveled in awe at the selfless heroes, who don’t have the luxury of staying home at this time, continuing to work.

And I have been afraid of the ramifications COVID-19 will have for me, but also for the entire country, in this time of uncertainty.

Each day is like a rollercoaster. But having lived through various times of chaos and uncertainty due to my personal health issues, I have learned that suppressing my feelings is counterproductive. It only leaves me experiencing those feelings at a heightened degree, which completely overloads my body, both mentally and emotionally. Allowing myself to fully feel the more difficult emotions, the fear and the pain I have lived through in the past, gives me the opportunity to also fully experience the joy and the love I have in my life.

During this difficult period, I urge you to allow yourself to feel every emotion fully, to let yourself feel the more difficult feelings. The sooner you feel them and acknowledge their presence, the sooner you can accept them and move forward to experience the good that is surrounding everyone right now; amidst the chaos and uncertainty, there is also kindness, love, and community.

Michaela O’Connor is a U.S. Pain staff member and chronic pain warrior and advocate. She lives with bilateral trigeminal and occipital neuralgia, dysautonomia, cervical dystonia, gastroparesis, and an undifferentiated mixed connective tissue disorder. In 2013, she was chosen to be a participant in the INvisible Project, which led to her becoming a U.S. Pain Ambassador for the state of California. It was through this role that Michaela became an official part of U.S. Pain’s team. Michaela graduated from the University of California at Davis in 2009 with a BS in Political Science and a double minor in History and War and Peace Studies. She is an avid writer and plays the guitar in her free time. She is also the proud aunt to her three nephews and four nieces, with whom she spends most of her free time. Michaela resides in Northern California.

Stuck at home because of quarantine? Advice from the chronically ill

By U.S. Pain Foundation staff

COVID-19 cases are increasing, and so are the number of individuals stuck at home—whether by choice or because of quarantine.

Staying at home for the recommended two weeks can seem daunting, but for people with serious chronic illnesses, being homebound (at least temporarily) is not abnormal. Many times, chronic pain makes it difficult to get out and about, especially on a particularly bad pain day.

Below, our team members with chronic pain offer some advice for how to keep busy while indoors.

Tips for staying active inside

Lori Monarca, Executive Office Manager and Director of the Ambassador Program, recommends the following: “Reading books, coloring or drawing, researching new recipes/trying out new recipes, and organizing.” If you have a yard, she also suggests planting or gardening as a way to get fresh air with minimal risks.

Nicole Hemmenway, interim CEO and mother of three, seconds coloring! “Having three young boys at home, I find myself coloring and building Legos often; surprisingly, I enjoy these activities and find them to be a great distraction. I also like planning a Google Hangout chat with friends. Because everyone at U.S. Pain works remotely, we use them for staff meetings. They’re a great way to connect from far away.”

Cooking and art are common themes for the team. Michele Rice, a Senior Ambassador Advocate, says she likes to paint. “A couple of other ideas are reading, watching a mini-series or movies, catching up on organizational tasks at home, and baking or cooking a new recipe.”

Janet Jay, a writer for the INvisible Project, loves knitting. “Everybody in my family got scarves this year for Christmas! And I’ve just been working on my stenciling art.”

It’s not always about being productive, she points out. “Marathoning TV is great, but I think playing games like “Breath of the Wild” on the Switch; this did more in the last year or two to get my mind away from my pain than anything else. I can’t recommend it highly enough.”

Ellen Lenox Smith, Director of Medical Cannabis Advocacy, is used to finding ways to be productive at home. One of her main suggestions is to “Write about living with pain. Consider submitting to the National Pain Report or The Mighty.” She also echoes the recommendations for coloring and gardening, and points out you can always start seedlings inside.

Michaela O’Connor, Director of the eNews, believes in the value of self-care. “Baths, masks, painting nails, and other sorts of pampering is great.”

Like many people with pain, she sometimes has insomnia. “In the night, I always enjoy a little TV or a podcast. There are podcasts about everything these days… living with chronic illness, cooking and baking, politics, art, investigative journalism, everything! Find something you’re interested in, and enjoy yourself!”

For Cindy Steinberg, National Director of Policy and Advocacy, there is plenty of work to be done, even from home. “I would use the time to read bills and advocate for or against them or read pain articles… that is because I am a policy geek. No knitting for me!”

How do you make the most of time at home? 

But I need that appointment!

By Ellen Lenox Smith

Lately, I feel like we are all living in the twilight zone. These changes to our daily lives are major and, at times, confusing and overwhelming to cope with. Those of us living with chronic, painful medical conditions are already living a life that is complicated and on the edge. For me, living with Ehlers-Danlos syndrome (EDS), a simple tight hug or slip and fall can actually become deadly. So, each day is already a challenge and I must constantly remain vigilant to remain safe.

Many of us are already learning how to live with these uncertainties and complications, so we turn to the tools we have developed to stay as safe and healthy as possible. My physical therapist, who specializes in patients with debilitating EDS, has noticed recently that we seem to be presenting calmer than others about the COVID-19 virus. She doesn’t mean we don’t care and aren’t scared, but instead, that we have already had to live on the edge and seem to see this as just one more challenge to add to our daily list.

That does describe me… until I think about important life-line appointments that help me to have the best quality of life I am able to. As calls keep coming in of appointments that are getting canceled, I am handling it pretty well–except for the prospect of my manual physical therapy getting shut down.

Manual physical therapy is the biggest life-line I have. My bones shift out of position, including the neck, sternum, hyoid, and trachea. When these are put back into position, I am safe. When they are subluxated or dislocated, my breathing is compromised and my oxygen levels drop. So, I will not deny the concern I feel. If I allow myself to think about those PT appointments needing to be canceled, I am very concerned about how to stay safe and alive. I work so hard daily to have a better quality of life. Losing the most important help I receive is truly frightening and a challenge emotionally.

Even though I’m afraid, I know I have to try to remain calm and focus on what I am grateful for and, unfortunately, plan ahead on how to live my more complicated life with the prospect that some, if not all, of my appointments, may be canceled.

I am not sure what I can do except picking my specialists’ brains on any education they can give my husband in attempting to help me at home if needed. And then the rest is out of my hands.

These are scary times, but we are pain warriors and need to remember to hold on to the strengths we have developed. Let’s take this on and hope for a return to normalcy as soon as possible.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

 

How chronic health issues prepared me for a pandemic

By Emily Lemiska

According to the Centers for Disease Control and Prevention, I could be at higher risk of contracting serious illness from COVID-19.

I live with rare neck and spinal cord defects, known as Klippel-Feil syndrome, which cause serious, debilitating pain. The condition affects my posture, which translates into reduced lung capacity. I also have the immune system of a flea: a cold that my husband recovers from in one week takes me about six weeks.

My increased risk is minor compared to others, but it’s still scary. But I’ve come to realize that, in many ways, living with chronic health issues for nearly a decade has prepared me for a worldwide pandemic.

1. Don’t threaten me with a good time—I’m used to the unknown.

Our society and culture trains us to think that we have control over our wellness, but that’s not necessarily true. Defective spines and infectious diseases don’t care about our best-laid plans.

I was the healthiest I’d ever been—exercising daily, eating well, and minimally stressed—when my neck worsened suddenly. One morning, I woke up with muscle spasms and nerve pain, pain that has yet to stop, nine years later. My life has changed completely.

I’m fortunate that I’ve been relatively stable since the onset of symptoms, but the future is uncertain: my condition is considered degenerative. Every time I experience a new ache or pang, I wonder if it’s here to stay. The lack of control can be excruciating.

That’s the reality with a pandemic, too. Even with all the hand sanitizer and social distancing in the world, you may simply just have the bad luck of being infected with COVID-19.

Recognizing that you can only do your best to avoid it, and focusing on the here and now, is essential to staying sane.

2. Working from home is my modus operandi.

Millions of Americans are now working from home or moving events and meetings online. Some might feel annoyed that they have to change up their routine; others like they’re getting an extended snow day.

For me? Working remotely is the only way I can earn a living.

I’m fortunate to have an employer (U.S. Pain Foundation!) that allows me a lot of flexibility, and have been working in my pajamas for years now. But that’s not the case for many people with disabilities, who are often met with resistance over accommodations and told their needs are unreasonable or untenable.

COVID-19 is showing us that yes, that meeting could have be an email, and that accommodations are not the problem—inflexible, ableist attitudes are.

We have so many wonderful technologies available to us, from Zoom to GotoWebinars to Slack. There’s no reason we can’t make work accessible for all, long after the pandemic ends.

3. Raincheck on the Olympics? No problem. I’m used to cancelling plans.

On the days when I’m in too much pain to function, I may have to cancel my plans. Sometimes I worry about seeming like a bit of a diva, and in general, I hate disappointing people.

But I know it’s necessary. For one, if I push myself and go, if I’m in a lot of pain, I won’t enjoy it as much anyway. Secondly, it could lead to a more serious pain flare-up, one that could make it so that I end up needing to cancel even more things.

Same goes for public gatherings and COVID-19. Yes, it’s hard to miss that concert or sporting event, but how much will you enjoy it if the person next to you starts coughing? How much will you lose out on if you end up seriously sick as a result? (And how bad will you feel if you pass it on to someone else?)

Hunker down now, and just think of how fun post-pandemic parties will be.

4. My home is already my sanctuary (since I’m often stuck there).

When I was healthy, I’d rarely come home before 9 pm on a weekday. Now, because my body requires a lot of rest, I spend a lot of time inside.

It was a difficult adjustment at first, but I’m resourceful (I was a Girl Scout for 10 years, after all). I read books, listen to podcasts, and watch TV. I cook a lot and have at-home yoga sessions. I do nearly all of our shopping online—groceries, clothing, household supplies—which is a great way to be productive while horizontal.

I’ve always got a running list of small chores to attend to, and I’ve never met a drawer that couldn’t be reorganized.

I’ve also made sure my house is my happy place. It’s only 1,000 square feet, but has no less than three couches, three recliners, and three beds, which I rotate around on like a modern-day Goldilocks. I’ve filled it with cozy pillows and blankets, plants, and artwork, and I keep it tidy as possible.

Two-week quarantine? Time to snuggle in and catch up on the latest season of Real Housewives.

5. If I had a nickel for every time a doctor didn’t have “the solution”

…I’d be riding out COVID-19 in a gold-plated bunker.

I think the average person might be startled by how little is known about COVID-19, and the uncertainty of how our health care system will fare in the event of a huge influx of patients.

But living with a rare condition—one that many doctors can’t even pronounce—I’ve known for years that the intricacies of the human body far outpace medical knowledge.

I’ve also known that health care doesn’t always have a treatment solution. I’ve tried every pain relief option in the books, but it turns out that preventing flare-ups (by pacing myself) and engaging in self-care (stretching, sleeping well, eating right) are often my best bets.

The same will likely go for COVID-19. I’m rooting for a vaccine or cure, but in the meantime, I’ll be hydrating and avoiding high fives.

A silver lining

The impact of the pandemic, thus far, is heart-breaking. Even as familiar as I am with some of the challenges, I’m devastated at the number of lives lost, and frightened for my safety and my loved ones.

When the dust settles, there is one silver lining I hope to see: a deeper appreciation for the chronically ill in our society, who live with these struggles, fears, and uncertainties—every day.

Emily Lemiska is Director of Communications for U.S. Pain Foundation. She has a special interest in infectious disease, having worked closely with the Infection Control Unit in a Public Affairs role at a Boston hospital.

Lions and tigers and pain, oh my!

By Michele Rice

My sisters and I pulled the large round rug our grandma had crocheted for us as close to the TV as we could get away with. It was winter and cold in our family room, but we didn’t notice as we huddled together, fidgeting with excitement waiting for the commercials to end and our movie to start. Yes, this was before there were VCRs, Netflix, and other viewing options, and we were forced to watch commercials. This was also years before a slip and fall would lead to the end of my teaching career and send me on a journey to find a way to live a happy life, despite having severe chronic pain.

Back to that cold night in January or February. This was the one night of the year that my sisters and I were allowed to stay up late to watch TV, and we were bubbling over with anticipation. Finally, the black and white beginning of the movie started, a hush fell over the room, and for the next few hours, we were filled with awe and wonder as our TV screen changed from black and white to brilliant colors. We screeched with fear when the wicked witch and flying monkeys appeared. We were watching the annual airing of “The Wizard of Oz.”

Flash forward to a chilly morning last month, when I’m checking email on my phone while simultaneously watching the Rose Parade recorded from New Year’s Day. It was nice to have the option to NOT watch commercials. The theme of this year’s parade is “The Power of Hope.”  That theme really resonated with me, but more on that later.

I look up and see Kaiser Permanente’s beautiful float filled with the beloved characters of “The Wizard of Oz,” and just like when I was a child, I was entranced. What is it about this story and these characters that continue to captivate me, even as an adult?

The float passes off camera, and I go back to checking my email, one of which is from U.S. Pain Foundation asking if I’d be interested in writing an article for their blog, Remedy. Of course, I said yes, but then I immediately began to worry about what I’d write. I shouldn’t have worried as sometimes the Universe puts things in front of us, or drops them on our heads when we aren’t paying attention, as was the case with me.

Later that day, I was scanning my recordings in search of something else to watch, and I chose an episode of “Challenge” from the Food Network. Lo and behold, the challenge for this episode was to create amazing works of art out of cake and sugar based on, you guessed it, “The Wizard of Oz!”

OK, Universe, I’m starting to get the message, but it took one more figurative bonk on the head, which came that night when I was watching the movie “Judy,” the story of Judy Garland, the actress that played Dorothy in “The Wizard of Oz.”  Message received, but how does “The Wizard of Oz” relate to my life with chronic pain?

One of the worst parts of living with debilitating chronic pain is the feeling of fear and hopelessness that often swirls violently through us like a tornado. What if this pain never goes away? What if it spreads? What if I can’t walk again? What if I can’t go back to work? What if the doctors can’t help me? What if, God forbid, this pain gets worse? Despite these overwhelming fears, I found the strength to keep going, just like Dorothy when she wakes up in Oz and battles her fears of never making it home again. How did Dorothy do it? How did I do it?

I go back to the theme of this year’s Rose Parade, “The Power of Hope.”  In the movie, “The Wizard of Oz,” the ruby slippers represent the little guy’s ability to triumph over powerful forces.  Dorothy is determined to get to Oz as she believes the Wizard is the only one that has the power to get her back home to Kansas and her family. Wearing the ruby slippers, she sets off down the yellow brick road to Oz, and she encounters many obstacles that could have made her give up hope. The Wicked Witch of the West, flying monkeys, and a field of poppies that put her to sleep.

There have been plenty of times, especially in the earlier years after my diagnosis, where I felt hopeless and sad, but something inside of me refused to give up. In my mind, if I followed the proverbial yellow brick road, it was going to lead me to a doctor that had the magic pill or treatment for my pain. Within the first five years, I had been to at least seven different doctors and at least that many physical therapists. I had tried dozens of medications, endured injection after injection, had frequent visits to the ER, and suffered through several experimental procedures, all in the hopes of finding that elusive end to my pain.

After encountering my versions of wicked witches and flying monkeys, I began to lose hope. Things got so bad that, at one point, I had a bunch of opioids in my mouth, ready to end the pain forever. But even in that darkest moment, I had a glimmer of hope that things could and would get better.

When Dorothy finally makes it to Oz, she discovers that the wizard is nothing more than an ordinary man and that he doesn’t have the power to get her home. She begins to lose hope of ever seeing her family again when Glinda, the good witch, appears and says, “You’ve always had the power to go back to Kansas.” When the scarecrow asks why she didn’t tell her before, Glinda responds, “She wouldn’t have believed me. She had to learn it for herself.”

My story would not have had a happy ending if I hadn’t put down the pill bottle and reached down with both hands to put on those ruby slippers. Rather than give up, I dug deep, clung to that glimmer of hope, and entered an intensive eight-week functional restoration program (FRP).

I completed that program back in 2005, and there have been many fabulous changes to my life since then. I got out of the wheelchair and learned to walk again. I moved out of my parents’ home and live independently. I drive an adapted car, and I’ve become an advocate and teacher for others living with chronic pain. Notice that I did NOT say that I’m cured or that I no longer have pain.

I still live with severe, and oftentimes very debilitating, chronic pain. The difference is that I now have the tools to live a happy life, despite that pain. It is most definitely not an easy journey, and there are plenty of times that I feel that fear and sadness begin to creep into my consciousness again. Thankfully, with the tools that I learned in the FRP, the love and support of my family, a caring pain management team, and most importantly, my refusal to give up hope, I always find a way out of that dark place.

Until recently, I gave almost all of the credit to the staff and doctors at the pain and wellness center for saving my life. Glinda, the good witch, otherwise known as my mom, has told me for years that it wasn’t the clinic that saved my life, but it was me. I didn’t believe her. I guess like Glinda said to Dorothy: I had to learn it for myself.

I suppose I looked at the pain and wellness clinic as my sort of Oz, where magic happens (and don’t get me wrong, wonderful things do happen there every day). But the difference is that I now realize it’s not just because of the team that works there. It’s us, the people living with pain, who have the magic–the magic of hope and the refusal to give up. That’s how Dorothy made it to Oz and eventually back to her family in Kansas, and that’s how I have not just survived a life with chronic pain, but live a happy life despite that pain.

I truly feel that the FRP helped me to discover that doctors aren’t wizards, there’s no such thing as a magic pill or treatment, and that only we have the power to heal our mind, body, and spirit.  We have to hold onto our inner scarecrow, tin man, and lion, and when times get dark and the pain gets overwhelming, put on those ruby slippers. Remember that there is always hope for things to get better and that we will triumph over the powerful forces of severe chronic pain by living a good life anyway. It may not be the life we had planned, but it can still be a happy one.

Michele Rice is a member of the U.S. Pain Foundation staff and an advocate for those living with chronic pain.  She is trained as a Pain Connection support group leader and helps run an online support group for those living with RSD/CRPS.  She is also a regular speaker on the graduate panel at IPM Medical Group in Los Gatos, CA.  Before she began her pain journey, she was a fourth grade school teacher and a pharmacy technician.  

 

 

How I manage EDS, part three: ER and inpatient tips

Ellen and her husband, Stu.

By Ellen Lenox Smith

People living with Ehlers-Danlos Syndrome (EDS) are often afraid to go to the hospital, due to a lack of understanding amongst the staff on how to safely care for them.

Last year, I had a negative experience in the emergency room (ER), one that almost killed me.

In the process of being admitted, after passing out over and over due to low blood pressure, things went terribly wrong. While being transferred from the ambulance to the hospital stretcher, my hip was dislocated. This dislocation was unintentional, but avoidable, as it was a direct result of the rough way the transfer was managed.

On top of this, they gave me no IV fluids for several hours, which should have been the first thing done to help elevate my blood pressure.

Complicating matters even further, I have food sensitivities, and no food was brought to my room that I could safely eat for the two days I was there.

At another point, when a nurse thought I had stopped breathing, she compressed my chest to stimulate my heart, even though I was wearing two medical bracelets warning I shouldn’t be given chest compressions.

Two years later, I am still paying for these mistakes.

As a result of my traumatizing and life-threatening experience, I sent a letter to the hospital in the hopes of never having another EDS patient experience what I did. I was shocked to receive a call that resulted in the hospital taking me up on my offer to meet with their doctors and nurses to help them understand how to properly handle us.

To prepare for this meeting, I asked other EDS patients to submit suggestions to enhance my program. I hope that this list will be helpful to both patients and hospital staff.

Please note the information in this post should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents my opinions alone.

Tips for managing EDS patients in inpatient settings

General

  • Consider having a generic EDS protocol for staff to get a quick understanding of this condition with new patients.
  • Put notes or a bulletin board or patient chart to share information and keep the patient safe from shift to shift.
  • If someone arrives with an ID warning bracelet, please read and respect what it says!

Avoiding subluxations

  • Be cautious, for EDS is an “invisible condition.”. Understand that touching and moving us can create more problems, so listen to the patient. Tread lightly using chest compressions, because our ribs sublux, dislocate, and break easily. Allow EDS patients to position themselves safely before any procedure.
  • Subluxations are a real thing. Don’t just take a quick X-ray and tell us, “It’s nothing, you’re fine.” When a joint feels wrong, there’s an injury worth finding some relief for.
  • Because we bruise easily, don’t rush to judgment with EDS children before reporting abuse.
  • Have on staff a physical therapist that can use manual energy techniques for re-alignment or allow an EDS manual therapist on the floor.

Food and Drug Sensitivities

  • Many EDS patients are drug reactive, so respect if a DNA drug test has been done or listen to what medications have not worked in the past. Pain relief is difficult to achieve with EDS so please believe the person.
  • Some of us use compounded medications that need to be accepted in place of what you have in stock in the pharmacy. Some also use supplements, so please respect the use of them. Many are using the Cusack Protocol supplement routine.
  • If a patient is using cannabis for pain control, consider allowing its use in the hospital in an oil, tincture, topical or pill form.
  • Many of us are food reactive, so send your dietician to the room to meet the patient and create a safe meal plan.

Invasive procedures

  • If there is a need to draw blood, use a butterfly or small pediatric needle.
  • If stitches are needed, try to use natural products over synthetic
  • Many of us have wound healing issues, so please be careful with the choice of tape and its removal. Some of us have skin that is fragile and easily tears.

Comorbidities

  • If a patient has low blood pressure, elevate their bed to a 30% angle. Hook up IV fluids quickly and approve the patient’s BP medication in time for their next dose. Consider using a PICC line if the IV does not hold.
  • If a patient sleeps with CPAP or BIPAP mask, be sure that it gets brought in and worn during sleep.
  • All types of EDS are at increased risk of scary vascular events. Any sudden or severe chest or abdominal pain needs a scan to rule out an aneurysm or another serious condition.

Surgery considerations

  • If there is a need for intubation, be careful with the movement of the neck and use small equipment. If an EDS patient presents with a neck fusion, do intubation using the fiber optic glide scope.
  • If surgery is needed, make sure the anesthesiologist does a pre-op interview before any procedures. Be careful about joint positioning and manipulation when performing anesthesia. Yes, that “jaw thrust maneuver” may make intubation easier or more comfortable, but it’s not worth the months of rehab from a dislocated jaw.
  • Please reassure your orthopedic residents that we’d prefer to avoid surgery, too. Having them share their fears out loud that they don’t want to operate on EDS patients because “that will just make things worse” may be true, but it’s not helpful. Nobody wants to feel like an untouchable leper. Instead, please focus on what you can do to help.

I hope that some of the suggestions here will help improve the quality of your life, especially as it relates to inpatient or emergency room care. We need to help each other as we wait for the medical world to get on board recognizing this is a real condition that is often misdiagnosed and mismanaged.

In the comments below, feel free to share ideas that have worked for you!

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

 

 

How I manage EDS, part two: Safety tips

Ellen and her husband, Stu.

By Ellen Lenox Smith

In this second part of my series on living with EDS, I wanted to share these safety tips that I have learned to follow that I hope will help others, like myself. (You can read the first part here.)

Please note the information in this post should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents my opinions alone.

Car safety

To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.

To get into the car with the least chance of slipping out of position, I sit down on the seat facing to the side of the car, turn toward the front of the car, and then swing my legs onto the floor.

Check and see where your legs are when you sit down. It is best if they are at a 90-degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble and need to adjust the seat.

Reaching

If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.

That will cause what is called an “up-slip,” where the femur jams up into your hip. It does not hurt at first but tends to show up the next day and is very uncomfortable.

To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Check to see if your knees match in height. If there is an up slip, there will be a difference in the leg lengths.

Go to an EDS-knowledgable PT and get it corrected as soon as you can before it creates significant pain.

Carrying objects

For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying luggage with wheels, as you see in the airport.

I don’t know why I hadn’t thought of that sooner. I used to carry 125 students’ essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.

Cooking

Using downward pressure while attempting to open a can with a can opener can cause you to potentially sublux your hand, fingers, elbow, and/or shoulder. A simple fix to this is to purchase an automatic can opener. All you do is set it on the top of the can, press a button, and let it do work for you!

I am very careful to not cut food due to the progression of my condition. The pressure created on my shoulders chopping food causes my shoulders to sublux, and creates movement in the sternum. Therefore I either look for items that are precut or am sure to ask my husband to chop for me.

I also am careful with lifting any heavy pans so I don’t bend and twist and do damage to my vulnerable shoulders. When something is too heavy, I ask for help or use a lighter pan. And lifting a pan with food is also something I avoid. I either ask for help to lift it to move or dish out the quantity into a container the weight  I am able to lift and move.

Greeting friends and family

If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.

The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”

Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you by mistake. For me, when someone catches me off guard, my rib sublux along with the spine and neck. Sometimes to give a warning, I actually wear my neck collar to alert others that something is not normal.

Twisting

I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.

When sitting, it is also important to not cross your legs, for this can throw your sacrum out of place.

Shoes

If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also, find sandals that have a good arch when you are not able to wear sneakers.

Arch support will help keep your body aligned – not just your ankles and legs, but your hips and back too.

Stability while sleeping

I have spent many years dealing with a trachea, hyoid, the U-shaped bone that supports the tongue and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine, I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the airflow had decreased or cut off.

I am now a proud owner of a new pillow another EDSer discovered, which is holding my neck and head in the correct position and not allowing my trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.

Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.

Sleeping with POTS

Many EDSers also have postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia that causes light-headedness, fainting, unstable blood pressure, and abnormal heart rates. I learned I had it in my 60s.

I was instructed to sleep at a 30-degree angle by raising the entire frame of the bed at the head, which can help gently train your body to better regulate blood pressure. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?

We found out from a physical therapist that there are bed risers sold that college students use to raise the beds of their dorm up to be able to store items underneath. We purchased four plastic bed risers and found that if we use two on each of the head corners, we can raise hotel beds up for me to simulate some of the height we have at home.

It is not as high as my bed, but certainly better than sleeping flat with POTS.

Do you have other tips?

I hope these tips may help you. Do you have any tips you’d like to share? Leave them in the comments below.

Next week I’ll be sharing some tips on how to stay safe in the emergency room, and advice for clinicians on how to safely care for people with EDS.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

 

How I manage EDS, part one: Body, mind, and spirit

By Ellen Lenox Smith

Everyone’s journey living with Ehlers-Danlos syndrome (EDS) is different, making it difficult for the medical community to learn how to help us. There are 13 different subtypes, with various levels of severity and impact. While some are able to live a decent life with little pain, others cope with constant subluxations and even dislocations. Some patients also have involvement of the spine and spinal cord, such as tethered cord, instability of the neck, and Chiari I malformation.

While we are all very different, there are many similarities. That means there are common strategies and techniques that can be used to address physical issues and improve the quality of your life.

My advice comes from 69 years of living with EDS (although I was not diagnosed correctly until the age of 54, which is inexcusable!). I’ve had 25 surgeries and tried countless therapies and interventions.

So, I do all I can to pass forward anything that I have tried that has helped me. We need to support each other, help remind ourselves that this is not in our head, and share our personal experiences and information as we wait for the medical world to catch up with what we have learned.

Please note the information in this post should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents my opinions alone.

Here are my suggestions on what has helped me improve the quality of my life:

The Body

  • First, let’s address inflammation. When inflamed, we will experience more subluxations or even dislocations, due to that looseness and space created. The pain caused by your bones shifting just millimeters is indescribable. Here are a few tips to learn how to reduce that problem:
    • Addressing food sensitivities has proven to be a lifeline for me. We tend to be very reactive, so having a blood test to identify the good foods you are eating that may be causing inflammation can drastically change the frequency of your subluxations. I use the MRT Food Sensitivity testing done, ordered by my dietician. It is heartbreaking to get the results and then be expected to eliminate foods you enjoy for weeks or even months. But when I adhere to this process, I feel so much better, with a clearer mind and body that calms down as a result of not slipping out of position constantly. A food reaction takes about 48 hours to stop in your body, so try to be patient and know you will feel better when the identified food item is out of your system. Note that you will want to consider retaking this test throughout your life, as our body chemistries and food sensitivities may change over time.
    • Addressing drug reactions also reduces inflammation. Unfortunately, EDSers tend to be very reactive to medications. Many of us have reacted to, instead of being helped by, medications prescribed. A simple DNA drug sensitivity test can determine, for the remainder of your life, what is safe to use or not. Imagine not only eliminating reactions but also feeling better?
  • Now let’s understand the need for both overall strengthening and the strengthening of specific muscles . An individual living with EDS must deal with ineffective ligaments and tendons due to the collagen defect we are born with. Currently, there is not yet a cure to correct this, so we need to be diligent in learning how to strengthen the muscles that are holding the body frame in place. Our poor muscles are on overload taking on not only their job but also taking on the function of the tendons and ligaments that are defective.
  • The good news is strengthening properly does help! In fact, my manual physical therapist, Kevin Muldowney, has his book on the market designed to be used by you and your manual physical therapist. You can purchase the book on Amazon. It becomes a daily effort to keep strong, but again, it is worth the time and effort.
  • It is important to understand that if you are not able to progress with the above protocol, then there may be needing to surgically correct the physical issues created by the impact of EDS symptoms on your body.  Have a neurosurgeon keep an eye on three structural issues that one might be facing: tethered cord, Chiari I malformation and craniocervical instability (instability of the neck/head), if you have had issues in those areas.
  • In addition, staying physically active is so important, despite the limitations that are faced. I can no longer move my neck and use my arms for swimming, but I can get lowered into the pool and kick on my back and use a snorkel to kick on my stomach. It makes me feel as normal as possible when I return to that pool. On the opposite days, I ride a stationary bike. For me, physical activity often has a beneficial impact on specific muscles, but it also has positive effects spiritually. When exercising, I feel closer to normal and thus more hopeful about my future.
  • Also, consider trying the supplement regime called the Cusack Protocol to help strengthen your collagen. I noticed a huge difference after about four months on the supplements. This was developed by a woman who is also dealing with EDS, along with her daughters. She worked with doctors and scientists to find out what we miss daily from our bodies for better health and strength. I noticed positive changes in a few months after introducing each supplement and was thrilled to have no reactions to any of them.
  • Addressing low blood pressure is also vital. Many of us face very low blood pressure to the point of passing out, many times without warning. My life turned around when just adding extra salt wasn’t enough and was prescribed Midodrine HCL 7.5 MG. By taking that three times a day, I can be safe with the properly elevated blood pressure and not live with the fear of passing out!
  • Getting good quality sleep is vitally important to relieving pain and improving quality of life. For me, medical cannabis oil has been hugely helpful in promoting restful, consistent sleep despite pain.

The Mind

Living with pain and disability can make you feel helpless and frustrated. To feel part of life, I still need a purpose—in conjunction with a desire to still be here and fighting. At times, there have been so many things wrong that this has been a struggle to accomplish.  There have been time periods when, because of my health issues, I was literally preparing for my death.

Today, I am facing the future realizing I can now live a better life again with more confidence and hope for continued better quality of life in the future. For example, for years, I was not able to read a novel for it would bring on instant headaches and dizziness. But since having a neck fusion, I can read for considerable periods of time. What a gift!

I attempt to keep my mind as sharp as possible doing the following:

  • Reading the paper daily
  • I end the reading with attempting sudoku and jumble word puzzles
  • As mentioned before, I stay on top of my pain, which allows me many restorative nights of sleep (and sleep is obviously vital to keeping your mind sharp and calm)
  • I try to surround myself with positive circumstances and people. It doesn’t take much to drag me down by other’s complaints and anger. I am happy to try to listen and try to help them, but I must know my limits, too.
  • I try to keep active and involved, whether testifying about cannabis or my condition, volunteering for the U.S. Pain Foundation, volunteering here in RI for the Rhode Island Patient Advocacy Group, along with being appointed for both the Rhode Island Oversight Committee to keep an eye on our medical cannabis compassion centers, and the Adaptive Telephone Equipment Loan (ATEL) Program. Also, my husband and I are in frequent contact with others struggling and help to pass whatever we have learned forward.
  • I discovered, soon after the diagnosis, that for me, writing is very cathartic. I started by writing poetry to vent my feelings and that led to publishing two books. I spent years writing for Pain News Network and now am a staff writer for the National Pain Report. I love not only passing knowledge forward, but also find it helps me to feel value and a sense of purpose.
  • Finding my voice has been so helpful. I used to be quite shy. Now I can talk in front of a large group sharing what I have become so passionate about – how to live with EDS, chronic pain and medicating safely with cannabis oil.

The Spirit

Every day, I attempt to find a peaceful moment where I take the time and go through in my mind all that I am grateful for. Although there have been years of losses, I am still here and have a life to live, no matter how challenging. This is the only life I get to live, and I have discovered feeding the soul is priceless. Each morning, after getting the dogs outside and putting the coffee on, I go back to the bedroom alone, put my hand over my heart, look out onto our farm window and run through all that I am so lucky to have in my life: my family, life itself, a new me with a fused neck, a new gut that is now back to functioning after two years of being totally shut down, enough money to pay our bills, and all the opportunities that are brought my way.

I think you will generally find that those of us who have been on the edge of death are more able to recognize and appreciate any good that comes our way. Nothing is taken for granted. Try to find the positive in the life you are facing, no matter how many losses you must deal with. It will help you to live life and feel happier.

In the next part of this three-part series, I will go over some general safety tips for reducing subluxations and pain when living with EDS.

Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.

 

How to talk about pain so your doctor will listen

By Diane Cleverly, PhD, Founder of Concierge Conversations

Did you know that by 2020, there will be a shortage of about 46,000 primary care doctors in the U.S.?

Not only that, but Medicare and Medicaid reimbursements per patient have dropped. That means physicians are increasingly pressured to see more patients per day.

What does this mean for you, the patient? For one thing, your doctor has basically taken a pay cut. So it’s more important than ever to walk into a doctor’s appointment prepared in order to help you connect with your doctor on a personal level.

But we all know that pain interferes with communication. It may cause you to get less sleep, or take meds that make you a little foggy; both of these can affect cognition. Pain is subjective—it’s hard to talk about even in the best of circumstances. So how can you ensure that you and your doctor understand each other?

Pain intensity scale

Doctors will often ask you to describe your pain intensity on a scale of 1-10—with 1-3 being pain that doesn’t bother you much at all and 9-10 constituting an emergency. But people with chronic pain often downgrade their pain—in part, because you’re so used to dealing with it that it doesn’t register the same way it might for someone who’s just stubbed their toe.

A good thing to remember when using the pain scale is that giving a range of numbers can also be very helpful to your doctor: “Well, I woke up at a 3, but after grocery shopping I was at a level 7.” Go into detail—at what level do you typically take medication? At what level do you call your doctor?

Functional impact of pain

A crucial way to communicate your level of pain with your doctor is to talk about the functional impact it has on your day-to-day life. You may know how pain has changed your life in a larger sense; how it’s made you a different person, or caused you to give up activities you loved. But your doctor doesn’t. Here’s a little secret: When you talk about what the medical community calls “daily activities of living,” doctors often sit up and take notice.

So here are some specific things you should discuss with your doctor:

  • Are you able to work?
  • Are you able to engage in social activities?
  • Can you exercise?
  • How is your sleep?
  • Are you able to shop for and prepare meals for yourself?
  • Are you able to do chores like laundry and cleaning?
  • Are you able to drive?
  • Are you able to handle your medication schedule?
  • Are you able to pay your bills?
  • Are you able to dress and bathe?
  • Can you climb stairs?

If you tell your doctor you’re having trouble with any of these things, it often will trigger them to investigate further.

Setting goals

The other important piece to keep in mind when talking to your doctor about your pain is communicating your short- and long-term goals.

Here’s where the pain intensity scale is crucial. State clearly to your doctor, “My short-term goal is to go from a pain level of X to a pain level of Y so that I can resume [working, cleaning my house, driving, etc.]”

Explain the timeframe you have in mind. “I’d like to feel a difference within four to six weeks.” Now, depending on your disease state, this may not be possible, and you can negotiate that with your doctor. But it’s important to set a short-term goal, and to target getting your pain levels below a 5—which typically means an improvement in function.

Ask your doctor, “What will it take to get me there?”

Next, move on to long-term goals. This may be simply getting the right diagnosis or it could be getting back to work (the number one thing most pain sufferers want). It may mean coming up with a long-term pain management plan or a strategy to reduce your risk of relapse. Whatever it is, communicate it.

Talking to your doctor about complementary medicine

Complementary therapies such as acupuncture, therapeutic massage, biofeedback, medical marijuana, or chiropractic care can be a touchy subject with some physicians—though they shouldn’t be. Ask your doctor in a nice way, “Would X therapy be helpful in achieving my short-term goals?” or “Do you think I could try X therapy along with standard therapy to manage my pain better?”

Your physician might even have other suggestions and resources for complementary medicine, so don’t be afraid to ask.

Above all, it may help to change the way you think about your doctor’s visit. It’s not a social call; it’s a business meeting. Keep your goals top of mind and stay focused. Set goals, track their progress, and refer back to them to assess your improvement over time.

If you need further guidance, visit personalhealth4u.wordpress.com.

Diane Cleverley, PhD, is currently creating regulatory submission materials for clinical trials as a senior medical writer for Synchrogenix, as well as helping patients improve their communication with physicians to get better healthcare. Dr. Cleverley graduated with a PhD in microbiology and molecular genetics from Rutgers University. She has spent time with patients the past 25 years in healthcare and patient education. Dr. Cleverley has also been an adjunct professor for a number of colleges and universities, most recently Southern New Hampshire University, teaching a course in Health Literacy.

 

This article was originally published in the INvisible Project.

Independence redefined

By Elisa Friedlander, LMFT

Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it’s been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, “Great! You can finally be independent!” There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My “response” came later that evening when I was alone in my head:

So, let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive?

I don’t think so.

“I did it myself!” It’s ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments (even more so when we’ve fallen on our tush a few times en route).

But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance?

In adulthood, our struggle with autonomy often begins with aging. Hearing, vision, or mobility changes can disrupt daily activities; sometimes to the extent that we question our own identity.

For me, grappling with independence began earlier, smack in the middle of my forties. Pain from failed spine surgeries and the subsequent onset of complex regional pain syndrome (CRPS) became disabling and, sadly, I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn’t even help myself. If I couldn’t cut my own food at dinner; if I no longer had my work and I wasn’t able to drive, what did that mean for me?

It meant I was no longer the independent person I had been all my life. At least that’s what I thought in the beginning, when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was eight years old:

Once there was an elf
She climbed upon a shelf
She did it by herself!
She helped another elf!

This early exercise in self-expression communicates that Little Elf’s mind wasn’t really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they’re meant to become therapists and help people get perspective on their inner-s(elves).

Disability prompted my own quest to re-evaluate life, from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means–and what it doesn’t. I realized independence isn’t driving to an appointment. That’s convenience. It’s not lifting a bag or walking. That’s mobility. It isn’t hearing, or talking. Those are communication modalities.

​Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we’re in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances.

So, as it turns out, I never actually lost my independence. What I lost was a life of relative ease…something we can all relate to (or will relate to in the future, merely as a result of the aging process). Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then, can we befriend that elf within us who finds creative ways to keep climbing–always lending a helping hand along the way.

 

Elisa Friedlander is a Licensed Marriage and Family Therapist, pain and disability advocate, and chronic pain support group facilitator. Elisa seizes the many opportunities offered by the U.S. Pain Foundation to better the lives of those impacted by chronic pain, including participation in the Support Group Leaders Training, Advocacy Summit, webinars, and more. Elisa provides psycho-education to her Southern Oregon community on issues such as pain, hearing loss, writing, and personal growth. As a writer, she speaks to positive ways of coping with chronic pain and other life challenges. To see more of Elisa’s writing, please visit www.ElisaFriedlander.com.

Metaphoring into pain

By Sonya Huber

Writing about pain–describing it–has been said to be an impossible challenge, but participants in the U.S. Pain Foundation’s webinar on writing pain through metaphor have proved that assumption wrong. During the webinar, I shared steps that I used in the writing of the essay collection Pain Woman Take Your Keys, including focusing on a particular pain sensation, describing it with an everyday metaphor, and then carrying that metaphor forward and playing with language in order to further explore and capture the sensation. While this helps a reader without pain to also understand the chronic pain experience, it also helps the writer to know their pain and in some cases to be less overwhelmed by it, as metaphors help us familiarize the pain experience.

What I found in my own writing is that “metaphoring into pain” gave me a visual or sensory image to represent the pain to myself. In my own case that image then serves as a reference point for future times that I’m suffering with similar pain, allowing me to share my experience, to feel less isolated and overwhelmed, and to even find humor or interest in putting the pain into words.

These samples below are from participants of the webinar, many of them written during writing exercises on the spot, and I really appreciated both the vividness and the willingness of participants to join in this experience.

Metaphors for pain

My head is a too-ripe melon bursting at its seams.
Heavy, pulpy juices throbbing, pulsing, pushing, about to rip me open.

Peggy S.

Did someone spill lighting fluid under my palms’ skin and lit it on fire? Or is that hundreds of starved piranhas biting my palms flesh from the inside? My immune system is under heavy stress attack. (Damn you, Divorce!) My palms skin dries, splits, bleeds and heals so super fast, again and again, that I think of myself as a Superhero with regenerating superpower.

Iliana G.

Vulture sits on my shoulders
Gracefully ugly
Claws clench into my bones
Heavy so heavy, changing my balance
Can’t move from under it

Not a pet or spirit animal
Nor even a guardian
But he watches over my every move
A jailer, a judge, a snitch
Steering my moves
A ratatouille rat of pain

Teresa L.

Today’s pain is eating away at my hand, the way a ravenous black bear gnaws on the frozen carcass of an early winter moose.

Sandra W.

Pain in my right hand is like the roots of an oak tree. The roots run deep and are part of an amazing network that is essential to the growth and life of the tree. When the roots are unable to sustain life the mighty oak withers and dies one day at a time.

Lisa M.

The pain from the osteonecrosis that I have in my skeletal system often feels like a hawk is scavenging for food within my various joint capsules. This hawk is never satisfied. He scavenges all through the day and night. Once the hawk emerged in 2006, he has never left. I have tried maintaining my nursing license and my profession but it was hard caring for patients with his talons constantly embedded in my bones.

Heather B.

DIY body:

I’ve long considered my body to be structurally unsound. Connective tissue lacks connectivity. Over time it’s been reinforced with concrete, expanding foam filling empty spaces. Foam is peppered with pin tacks – workmen leaving tools on site. Nails rattle around my skull, settling at the back of my neck causing thunder and lightning sparking in my dreams. Tight elastic braces my neck, ensuring nothing escapes. Large metal cramps clamp my head to my shoulders while squeaky polystyrene fills arms and legs – hands and feet left numb and unco-ordinated. Thick gloss paint left out to not quite dry blocks my thoughts…

Louise K.

Sonya Huber is the author of five books, including the award-winning essay collection on chronic pain, “Pain Woman Takes Your Keys and Other Essays from a Nervous System.” Her other books include “Opa Nobody,” and “Cover Me: A Health Insurance Memoir.” Her work has appeared in the New York Times, Brevity, Creative Nonfiction, and other outlets. She teaches at Fairfield University and in the Fairfield low-residency MFA program. Find her at www.sonyahuber.com and on Twitter at @sonyahuber.

 

Gift guide for people with pain

By Janet Jay

The holiday season is here and with it, the need for gift ideas! If you’ve got someone with chronic pain in your life– or if you have chronic pain yourself– here are some ideas to make life a little easier. The products were selected by U.S. Pain Foundation staff, the majority of whom live with chronic pain.

1. Weighted blankets 

Sleep is essential to healing, but can be hard to come by for people in chronic pain. Weighted blankets are a great option– they can be surprisingly calming, especially for people with anxiety and depression-related issues that so often go along with chronic pain.

2. TENS (transcutaneous electrical nerve stimulation) units

TENS units, originally available by prescription only, have been used for years by people with all kinds of chronic pain. They work by sending a current through the nerves in the body that are causing pain, using the sticky pads to direct the current to exactly where they hurt. They are low-risk as far as side effects and affordable to try.

3. Thrive Tape

This unique brand of kinesiology tape is a thoughtful gift for someone with pain. Kinesio tape is elasticized material that can be applied to almost any area of the body to help support joints, muscles, and tendons. It also helps promote proper motion and alignment. Thrive Tape is different in that it includes a blend of minerals and ceramic powder, which release with heat from the body.

4. Epsom salts

Chronic pain is stressful. A nice bath can calm and relax you both physically and emotionally, especially when used in conjunction with aromatherapy and epsom salts. If you already have a preferred essential oil, you can mix it in yourself. Some epsom salts are available with scents like lavender and eucalyptus already infused.

5. Nuun tablets

Staying hydrated is important for everyone, but it’s especially vital for individuals with chronic health issues (including postural orthostatic tachycardia and dysautonomia). Nuun tablets are awesome, portable electrolytes. Some varieties come with vitamins or caffeine, too. Simply drop a tablet into a water glass, and voila! An instant pick-me-up. Buy your loved one a variety pack so they can try a few flavors.

6. Theracane

I wish I had heard about Theracane earlier! This cane-shaped plastic item allows a person to reach just about any muscle on their body to massage out knots and soreness or even do trigger point massage. It’s a must for anyone in chronic pain who lives alone.

7. Dry shampoo

Self-care activities, including showering and washing your hair, can be challenging when you have chronic pain. Dry shampoo is a fabulous product that can help a person with pain go longer in between washes. Dry shampoos are powder-based, so they soak up excess oil, making hair look and feel cleaner without the time and energy needed for scrubbing, rinsing, combing and drying.

8. Axon sunglasses

When I get migraines my eyes are extremely sensitive to light, and Axon’s migraine glasses have truly been a lifesaver. As soon as I put them on, I can feel my eyes relax; they let me extend the time I can be out and about in challenging lighting of all kinds and make a huge difference in how much discomfort light causes me during a migraine attack.

9. Acupressure mat

Some people swear by these acupressure mats. Even if you can’t make it to an acupuncture clinic, this mat / pillow set can help you work out some pressure points and leave you looser and more relaxed. It’s also very affordable.

9. Food delivery 

Everybody’s got to eat, and chronic pain can make shopping for groceries and cooking difficult. One option is to gift a meal or grocery delivery service. Companies like InstaCart and Peapod can deliver groceries straight to someone’s door. Others, like HelloFresh or BlueApron, send pre-packaged ingredients and recipes. (But note: the ingredients for the meal delivery companies still need to be chopped and prepared, so that might not be ideal if someone has severe pain.)

10. Arts and crafts items

If the person is up to it, crafts are a great option for someone stuck at home dealing with chronic health issues. Crafts can also be helpful distractions from pain. There are a million types of crafts, and there are beginners’ kits available for each type. Not sure where to start? A coloring book makes a nice, simple gift that can help someone explore their creative side.

11. Gift cards for services

While physical gifts are awesome, there might be a way your present can truly save someone with a chronic condition from increased pain: by giving them a gift certificate for a service. For a lot of people with chronic conditions, the relief from an afternoon of maid service or a massage can far outweigh any gift you can wrap under the tree. LivingSocial or Groupon are great resources for deals on services like these. You can buy the service directly, or give the person a gift card to the site so they can pick their own.

Whatever you decide on, remember: chronic pain is hard–anything you do to show some love to someone living with it will be appreciated.

Janet Jay has been dealing with chronic pain and depression since she was in early high school. Despite these challenges, she’s spent over a decade working in communications and freelance journalism, where she has been published in outlets like Maxim, Vice Motherboard, and Popular Science. She’s also a writer for U.S. Pain Foundation and the INvisible Project.

 

 

Tips for surviving the holidays with chronic pain

By Amy Orr

‘Tis the season – for stress, excess, and expectations. No matter what holiday you celebrate, this time of year can be a lot. There are elaborate dinners to prepare, parties to host and attend, presents to find, decorations to hang, families to visit, traditions to respect, and very little time for self-care. But your body doesn’t know that, and chronic pain is, if anything, exacerbated by stress and busy schedules.

Here are some tips to help you survive the holidays, pain or no pain:

1. Be realistic

Tempering the holiday madness may not sound like much fun, but if you start off with unrealistic expectations, then no matter how hard you try, you’ll never quite manage. If your physical ability is less than it was last year, adjust your schedule and chores accordingly. Don’t take on more than you know you can manage – that’s just setting yourself up for failure. Consider what’s practical, and use that as your starting point for all your holiday plans.

2. Share the load

A lot of people try to do it all themselves, but the holidays are meant to be a family affair! So don’t be afraid to share the workload. For parties, consider going potluck. For the main event, share cooking responsibilities by assigning someone to each dish. This ensures that even if you have a bad day, there will still be a good meal for everyone. Ask others to help you decorate, ask the kids to pitch in, or pay the neighbor’s kid to shovel your porch. You do not have to do everything yourself.

3. Shop online

Online shopping is a godsend, especially for those who struggle to fight their way around malls at this busy time of year. And it’s not just for gifts. You can order groceries, alcohol, decorations, and even cards online. This helps streamline your chores and minimizes energy spent.

4. Plan for downtime

When everything feels like a rush, it can be hard to shoehorn in time for yourself. So don’t rely on doing this in the moment – plan for it. Deliberately set aside some time each day to rest and recuperate. Avoid scheduling multiple energy-intensive activities on back-to-back days, and arrange to have a day off after big events. You have to be proactive here, as otherwise your time will fill up without you even realizing!

5. Keep to normal routines

Keeping a routine is tough during the holidays, as many of the touchstones are gone. You may be off work, the kids are home, there could be family staying with you – everything is all over the place! But sticking to your usual, tried-and-tested routines will never matter more. Keep your medication schedule, your sleep schedule, and your exercise routine. This helps you feel as well as you can, each and every day, no matter what else is going on.

6. Be organized

No matter how much you scale back, there is still a laundry list of things to do over the holidays. You can get a lot done, even with chronic pain, if you remain organized. Make a list of all of your tasks, and prioritize them. Know in advance what you can let slide and what has to be done. Set a schedule and stick to it. It’s incredibly tempting to get caught up in holiday cheer and ignore warning signals, so set a hard “out” time for events in advance. This ensures you take care of your body, no matter what your heart may be telling you!

“You are in control of what you choose to care about and where you spend your energy; don’t let other people’s abilities, successes, or efforts impact how you feel about what you can do.”
7. Drive Two Cars to Events

Guilt for dampening loved ones’ merriment can be a big issue, so plan ahead to avoid it. Driving two cars to an event means that you can leave when you need to, without hindering anyone else’s fun. It gives you and your loved ones maximum flexibility. Difficulty driving? Plan in advance to take a taxi or Uber home early.

8. Communicate

You are not the only person who will be stressed over the holidays.  It’s pretty much guaranteed that everyone else is feeling rushed and a little overwhelmed. This may mean that usually sensitive or helpful friends and family suddenly seem less caring, or too busy for what you need. It’s important to understand that this isn’t about you. Remember to cut them some slack for any thoughtlessness, and be clear when stating what you need and what you can and can’t do.

9. Enjoy yourself

With all this talk about “coping” and “managing” and “chores,” it can be easy to forget the holidays are supposed to be a time of fun. So don’t forget to have some! Make time for yourself and what you enjoy, even if it means saying no to someone else. You don’t have unlimited energy or strength, and you can’t do everything. Be kind to yourself, and choose one or two special activities that are just for you.

10. Remember: It’s not a competition

This time of year can sometimes feel like a never-ending exercise in living up to (or failing) other people’s expectations. But it doesn’t have to be. It doesn’t matter how amazing your neighbor’s decorations are, or the face your mother-in-law makes when she sees your store-bought holiday spread. You are in control of what you choose to care about and where you spend your energy; don’t let other people’s abilities, successes, or efforts impact how you feel about what you can do. Being in chronic pain is hard enough without all of the judgement, so let it go. It doesn’t matter what anyone else has done.

About the author:

Amy Orr is a chronic pain advocate and author. Her new book, Taming Chronic Pain: A Management Guide for a More Enjoyable Life, includes discussions about doctors appointments, practical advice for handling the day-to-day, and a frank exploration of the psychological consequences of pain. Amy’s work is centered on patient-led advocacy and care, and is based on over a decade of researching chronic pain while managing her own. Check out all of Amy’s work at www.amyorrbooks.com.

 

 

Five surprising ways you might be worsening your sciatica

By Brent Wells, DC

Sciatica is a chronic condition that most commonly comes from narrowing of the spine, bone spurs, or a herniated disk. Although sciatica can be painful, it usually resolves on its own after a few weeks, although over time, it may return. From sitting too much to wearing heels, a variety of otherwise common activities are often the culprits of recurring sciatica pain. In this article, we will explore the symptoms, causes, most common ways you may be triggering your sciatica, and what you can do to finally find consistent relief.

Symptoms

Below are symptoms that are often associated with sciatica:

  • Pain from your lower back/spine into your butt and down the leg
  • Mild aching to sharp, burning pain in the affected area
  • Pain is worse when you sneeze or cough
  • Numbness
  • Tingling
  • Muscle weakness
  • Pain, generally on one side of the body

Pain is most commonly felt in the lower back and butt, and for some people, down one or both legs. The severity of sciatica pain can very widely: it can simply feel like a dull ache or it can cause intense shooting pains that are almost unbearable.

Causes

Sciatica is a chronic condition that can have a variety of causes, most commonly bone spurs, herniated disks, and pinched nerves. In very rare cases the pain is linked to diabetes and tumors in the affected area.

People who are older, are obese, sit for long periods of time, have diabetes, or jobs that require heavy lifting and bending throughout the day are more likely to develop sciatica during their lifetime. It is estimated that around 40% of people will experience sciatica during their lifetime.

Surprising Ways You May Trigger Your Sciatica

High Heels and Uncomfortable Shoes

Fans of fancy footwear: if you have sciatica and just cannot seem to shake the pain, your high heels may be causing your discomfort. High heels change your distribution of weight, putting pressure on the front of your foot and causing you to push your hips forward.

When you walk or stand too long with your pelvis pushed forward like this, it puts stress on your hamstrings, stretching them. Since the sciatic nerve is located by the hamstrings, this constant stretching and pressure can do a lot of damage to your sciatic nerve.

Uncomfortable and un-cushioned shoes can also be hard on your feet and your hamstrings.  At minimum, try to wear shoes with support built in them, avoiding heels and non-supportive shoes like flip-flops. There are also shoe inserts you can purchase that are designed specifically for people with sciatica.

Carrying Items in Your Back Pockets

If you find yourself always carrying your phone, wallet, or other bulky and heavy items in your back pockets, you could be unknowingly triggering your sciatica. Although this is not an officially recognized cause of sciatica, many people who suffer from this condition have coined their own terms such as “back-pocket sciatica” and “cell phone sciatica.”

When you sit down with items in your back pocket, they can put unnecessary pressure on your piriformis muscle, which is located right by your sciatic nerve. Imagine you have a full wallet in one pocket:

Tight Pants

Do you often wear tight and form-fitting pants, skirts, or shorts? Believe it or not, this could lead to unwanted sciatica pain. Overly tight bottoms put a lot of pressure on your hips, butt, legs, and sometimes even your lower back and spine. This constant compression in these areas puts pressure on the sciatic nerve and surrounding areas, triggering pain and discomfort. You don’t have to change your entire wardrobe! Just make sure nothing is so tight that it’s digging into you or causing you pain.

Sitting Too Much

Sitting too much can also trigger or worsen sciatica pain. Sitting is another activity that puts a lot of pressure on your glute muscles, lower back, and your sciatic nerve. Moving around gives your sciatic nerve a break, a chance to stretch and allow blood to flow to the area. If you work a desk job, you can try a standing desk, take a short walk around the office every hour, or dedicate part of your lunch break to a stroll by yourself or with a coworker. Even inside the office, you can spend a few minutes doing  leg and back stretches to get that blood flowing and to stretch out tight areas in your lower body.

Being Overweight and Inactive

If you are overweight and/or don’t get enough exercise, recurring sciatica pain is all too common. Extra weight, especially in the mid-section, puts pressure and strain on the pelvis and the lower back.

Lack of exercise and physical activity also make sciatica pain worse in the long run. If you do not move around and never give your body a chance to get stronger and more flexible, you are doing yourself a serious disservice.

Coming up with an exercise routine, losing a few pounds, and incorporating stretching into your weekly routine can ease up pain and trigger your sciatica less.

 

When it comes to managing your sciatica and doing things that will stop triggering your pain, it takes some trial and error to see what works for you. Trying out the above options are a great starting point when you have tried other remedies, and nothing has worked.

If you still find your sciatica is triggering too much and are unsure of the cause, a trip to a chiropractor specializing in sciatica, massage therapist, or other medical professionals may be the way to go.

 

About Brent Wells

Dr. Brent Wells, DC, has been a chiropractor for over 20 years and has treated thousands of patients. He founded Better Health Chiropractic & Physical Rehab in Alaska in 1998 and is a member of the American Chiropractic Association and the American Academy of Spine Physicians. Dr. Wells is also the author of over 700 online health articles that have been featured on sites such as Dr. Axe and Lifehack. He continues his education to remain active and updated in all studies related to neurology, physical rehab, biomechanics, spine conditions, brain injury trauma, and more.

 

Stayin’ alive

By Mia Maysack

There’s no limit to the unconditional amount of reasons a person could be in pain: genetics, an accident, injury, or surgery gone array.

Swimming/diving were my passions.

It has been said, fear wasn’t an emotion I demonstrated often – at the age of 3, I would attempt jumping into the deep end on my own accord.

At 10 years old, you could find me spending my waking moments at the neighborhood pool from open – to close. Until bacterial meningitis robbed me of childhood, little could anyone have known that I’d live with head pain forevermore.

Though it has not been painless, I remain grateful, thankful, and blessed to be alive.

Pursuing my love for the water was no longer plausible and throughout the years that followed, my condition continued to evolve, resulting in heightened discomfort, less activity, more severe symptoms as well as limited mobility at times.

It never gets any easier to experience grief and accept the lack of control or sense of betrayal as our bodies seemingly turn against us – cancelled appointments, career setbacks, missing family/friend functions, lack of follow-through on commitments…

In the midst of this heartbreak, one day my Spirit led me to dancing.

The rhythm of a good beat speaks to me in a way no one else, or thing, ever could.

There’s obvious irony in the fact that it feels as though I just slammed my head against the wall but yet loud – extremely loud – bass-heavy music sometimes is the only thing that can do the trick to snap me out of a funk, pun fully intended.

Mostly all my People already know about the fact I’ve got a *system* in the back of my car, so that sometimes the beat gets so heavy, your teeth almost chatter and it is radiating through your neurons while rattling your rib cage…  I’ve got no explanation for its comfort other than perhaps it is throbbing to a different frequency. Plus, of course, there’s relevant science demonstrating an uplifting correspondence between sound and pain.

Needless to say, creatively expressing myself is something that takes a back seat more often than I care to admit – despite the fact I used to go out weekly and once felt well enough to dance every day.

There are others who may read this who’ve never had the ability to dance, let alone done so as much as I have in my life. And I know of many who have also had to give up on some of the things that they love most, thus what I’ve learned is, we must remain appreciative – start where we are, use what we have, do what we can.

Sometimes, it’s all about the low-impact stretches – at other points, I may be fortunate enough to *go hard* for a few moments so I do not waste my precious time dwelling on the past, because I’m too busy ensuring I don’t take the present moment for granted.

Dancing is a release for my ailments, a way for them to affirm dialogue in a way I couldn’t ever begin to express in words –  the treachery of persistent illness and chronic pain have taken a lot from me, but they’ve also offered many gifts I wouldn’t have otherwise been graced with – including a more powerful possession of strength, resiliency, courage and creativity.

It’s important for us to re-find pieces of ourselves among the ashes that is this life. There’s no telling how many times these experiences will require us to start over from scratch, but that does not take away from the amazing uniqueness that sets us apart; because we all have individual specialties that this World needs, regardless of any obstacle, hardship, odds stacked against us, or limitations.

Does partaking in this level of physical activity have consequences?

Most certainly!

I am fortunate enough to have had a somewhat recent opportunity to have made it out dancing for the first time in over a year…

I found a secure corner directly under the speaker, for essentially as long as I could hold myself up, because by the time I’m done I can barely walk, let alone navigate stairs or proceed with much of anything at all prior to just completely needing to crash.

I gave it my all for a while, even broke a crazy sweat, which felt cleansing – although there were indefinite repercussions. I’m out there praising the Universe for giving what’s stored up within me, a chance to evaporate out of my DNA, through each limb, only leaving room for what is most serving to the healthiest version of myself to vibe its way through.

Ordinarily, however, I often have to stop before even getting through one song and still very well might “pay the price” for hours or perhaps days after wards – which is all the more reason I am so proud, humbled, pleased and honored to share this piece of my heart with you all in honor of #KNOWvember’s #ArtThroughPain Campaign.

 

 

About Mia Maysack

Mia Maysack is a chronic pain warrior, U.S Pain Ambassador, Support Group Leader, and Volunteer Patient Advocate.  Along with writing for Pain News Network, she is also the Founder of Keepin’ Our Heads Up and Peace&Love Holistic Health/Wellness.

How to make flying less of an ordeal for your back

By Daniel Singleton

Living with chronic back pain is tough and it can really drain you physically, mentally and emotionally. So, if anyone needs a good holiday it’s us, right?

However, while thoughts of jetting off to a sandy beach paradise can get you through the darkest of pain days, when departure day finally arrives you are faced with a big problem: the long flight you need to take to get there.

Being cramped up in an uncomfortable seat and suffering the vibrations from the airplane for hours on end can be real torture for your back. And it can leave you feeling like rubbish for the first few days of your vacation—when you should be relaxing and enjoying yourself.

But flying doesn’t have to be such an ordeal. There are things you can do before, during, and after your flight that will help to keep your back feeling as well as possible on your journey instead.

Before your flight

If you already suffer from back pain, then your pre-flight preparations shouldn’t just include finding the best deal. You also need to prepare yourself for what’s to come to give yourself the best fighting chance. And you can do this by:

  • Booking the most direct route you can afford, as changing planes and waiting around airports for hours on end do your back no favours.
  • Calling the airline in advance to discuss any accommodations you may need, like a special seat request or a wheelchair in between gates.
  • Staying active and getting into the habit of stretching regularly in the weeks leading up to the flight. This will help improve your flexibility, keep your back supported, and give your body the best chance of withstanding the stresses and strains of air travel.
  • Not overloading your carry-on luggage, as dragging a heavy bag around the airport and straining your back muscles before the flight itself is a pretty bad idea! You might also consider purchasing lightweight luggage with wheels in advance.

During your flight

Once you’re on board, the battle against back pain truly begins as you are wedged into your seat. So, try to do the following to minimize any discomfort on your journey.

  • Sit with a good posture. This isn’t easy in an airplane seat but try to sit up straight keeping your neck and back in alignment and a slight ‘S’ shaped curve in your spine to relieve pressure. Also, keep both your feet flat on the floor to relieve some of the strain on your lower back.
  • Use travel pillows to help keep your body aligned. For instance, you can buy an inflatable lumbar support pillow to place between your lower back and seat to keep the healthy curve in your spine or you can use a wrap-around neck pillow to keep your head nicely balanced.
  • Recline your seat slightly to ease the pressure on your lower back.
  • Get up out of your seat regularly to move around the cabin and stretch. This will release any tension that has built up in your muscles and get the blood circulating again.
  • Try to relax, because when you’re stressed and anxious you can hold this tension within your muscles. Deep breathing exercises are good for this.
  • Drink plenty of water as the pressure in the cabin dehydrates you much more than usual so you need to keep topping up the tank. This will help to keep your joints and spinal discs lubricated.
  • Distract yourself with books, music and movies. Becoming absorbed in these things takes your attention away from the pain, which can block pain signals from reaching your brain.

After your flight

  • If you’ve been following these tips until now, then hopefully your back won’t feel too bad as you get off the plane. However, the flight likely will still have taken a toll on your body… so it makes sense to do a few things that will help you to recover faster and feel like yourself once more. These include:
  • Having a good post-flight stretch once you reach your hotel. This will help to loosen you up, release tension from your muscles, and get your circulation going again.
  • Going for a walk. Exploring your new surroundings and getting some fresh air into your lungs will do you the world of good after a long flight.
  • Taking a warm bath. If your hotel room has a bath, take advantage of it, as a nice soak will help to relax your aching muscles after a long and stressful journey. Even better if you have some Epsom bath salts on hand, too.
  • Trying to get a good night’s sleep as this is where your body and tired muscles can heal and regenerate themselves.
  • Hopefully, following the tips I’ve discussed here will go a long way in making flying out on your next vacation much easier and more comfortable.

Happy travels!

About Daniel Singleton

Daniel Singleton is the founder of Back On Site, a website designed to help people fight back against persistent back pain using his own personal experiences with the condition and the latest medical and scientific advice.

 

How genetics might impact the way you respond to medication

By Scott T. Roethle, MD, FASA. Board certified, American Board of Anesthesiology.

Did you know that your genes can affect how you respond to certain medications and whether you experience adverse side effects? For example, about 10 percent of people will receive little or no pain relief from codeine because their genetics mean that their bodies don’t properly metabolize codeine into morphine[i].

For the 50 million Americans who experience chronic pain, it can be incredibly frustrating not to find adequate relief from prescription medication or experience adverse effects when trying a new prescription option. In the past, doctors and patients alike had to rely on trial and error to find out which medication and dosage would work best. Now, patients can access a simple genetic test which could tell them which pain medication might work best for them.

Genes determine your medication response

Your body has thousands of genes that you inherited from your parents. Your genes determine which characteristics you have, such as your eye color, hair color, or blood type. Some genes are responsible for how your body may absorb and/or respond to certain medications. This includes both prescription and over-the-counter medications.

Pharmacogenetic (PGx) testing is a type of genetic test that assesses how likely someone is to respond effectively, or to have an adverse response, to a certain drug. Recent advances in pharmacogenetic science have shown that 95 percent of a person’s response to a drug is determined by genetics.[ii] This means that two people can take the same dose of the same drug but respond in very different ways.

How does PGx work?

A PGx test uses a small saliva sample to analyze your DNA and look for the genetic variants that are associated with variable response to certain medications. The results of a PGx test, combined with other clinical and diagnostic information, can be very valuable and may allow physicians to create individually tailored treatment plans for their patients. Patients, particularly those taking multiple medications, could benefit from more effective treatments and potentially fewer adverse reactions thanks to PGx testing.

Fortunately, PGx testing is widely available and can be done from the comfort of your home. There are multiple companies who will send you a kit that allows you to mail in your saliva sample. From there, you’ll receive the results and even a consultation with a clinician.

About elicity: elicity is an online health platform offering easy, at-home access to medically actionable pharmacogenomics testing (PGx) combined with on-demand physician support and guidance. elicity is powered by InTeleLabs, a telehealth and personalized medicine company. To find out more about elicity and PGx testing, visit www.myelicity.com.

[i] Dean L. Codeine Therapy and CYP2D6 Genotype. 2012 Sep 20 [Updated 2017 Mar 16]. In: Pratt V, McLeod H, Rubinstein W, et al., editors. Medical Genetics Summaries [Internet]. Bethesda (MD): National Center for Biotechnology Information (US); 2012-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK100662/

[ii] Kalow W, Tang BK, Endrenyi L. Hypothesis: comparisons of inter- and intra-individual variations can substitute for twin studies in drug research. Pharmacogenetics. 1998;8(4):283–289.

Finding balance between exercise and rest with chronic pain

By Ryan Drozd, Certified Personal Trainer, Registered Yoga Teacher, and Licensed Massage Therapist

Living with chronic pain makes it difficult to think about movement and exercise, but both are important components of effective self-care and even reducing pain. Our bodies are designed to move–movement is an integral part of life. The human body has about 650 muscles spread across our entire skeleton, creating an elaborate pulley system that helps your joints move. Chronic pain can limit or completely restrict movement across these joints or specific areas of the body. This is annoying at best… and debilitating at worst!

While rest and recuperation is necessary for many injuries and illnesses, over time, lack of movement can create stiff muscles, decreased range of motion, and loss of strength. Unfortunately, pain makes exercise more difficult: we may want to avoid certain exercises or certain areas for fear of exacerbating our pain. And it can be very discouraging to try to move or exercise, only to be left feeling worse the next day. The trick is finding the right type of movement and the sweet spot of duration that  will decrease pain, rather than amplify it.

I have been a competitive athlete for most of my life and personally began suffering from chronic neck, lower, middle, and upper back pain after several Brazilian Jiu-Jitsu injuries. It was (and is) very difficult for me to realize my limitations, yet still remain physically active. But it’s so important to establish a movement routine that works for your specific situation. For me, that meant giving up contact sports and endurance training for short, high-intensity yet low-impact exercise. I love to hike and trail run on my good days. Walking around the block, a 30-minute sauna session, or warm-flow yoga or gentle or Yin yoga help me get through my bad days. The secret is to find our edge, then work with it, not against it. We can try to lean into that boundary in a safe, minimally painful way while still improving our health.

I am a huge fan of sauna because it increases breath rate, heart rate, blood circulation, and skin and core body temperature. Sound familiar? These are almost identical to the benefits we reap through exercise! Heat also facilitates copious amounts of sweating, which may seem unappealing, but is actually high beneficial because sweating activates the lymphatic system. Traditional saunas, infrared saunas, and steam rooms can help combat muscle stiffness without movement as well.

Gentle, restorative, and/or Yin yoga are fantastic ways to generate movement without additional pain. Gentle yoga involves slow-paced, guided movement linked to breath. Restorative yoga is very slow as well, with the overall goal centered around mindfulness, relaxation, and opening. Yin yoga is based around asanas (poses) that are held for 2-5 minutes. This differs from restorative yoga because some discomfort is encouraged, rather than avoided, to facilitate muscular and fascial release.

I enjoy practicing yoga because it allows me to be more mindful with my body and find peace within it rather than just pain. Yoga does not have to incorporate movement, but it always involves the breath. Comfortably sitting, putting legs up a wall, or simply lying flat palms up with legs supported are all forms of practicing yoga, as long as our focus is continually being directed toward the breath. Developing a regular meditation practice through yoga has been very beneficial for me. Numerous studies have shown that 5-10 minutes of daily meditation can reduce inflammation, anxiety, increase mental focus, trigger the relaxation response in the brain, and improve sleep quality–all very good things for people with chronic pain. Try to find a yoga studio near you that has gentle or restorative yoga classes or simply look up some instructional videos online.

Walking is another low-impact option that facilitates blood flow. I have found that short walks and exercise under an hour are most effective for me. It is also possible to incorporate hills into walking outside based on location, or adding a slight incline the treadmill if a gym membership is an option. If you’re able to get outside, the added boost of fresh air and being in nature can really help your stress levels. The key is to start small and experiment with what works for your body.

Whatever movement or exercise looks like for you, the important thing is to try! Listening to what our body wants, throwing out what we “could” or “should” do based on past experiences, and being easy on ourselves, especially on bad days, sets us up for long-term success. When I am hurting badly I recognize that I need to rest, regardless of what I had previously planned for my day. I have learned the hard way that pushing through the pain on a bad day will only leave me exhausted and out of commission for days. We all have physical limits, but they do not have to define us. I encourage you to try to work toward understanding your personal limits and, then, find ways to still move your body within those limits.

Ryan Drozd is a National Academy of Sports Medicine-Certified Personal Trainer and Fitness Nutrition Specialist, RYT-200 Yoga Alliance Teacher, Licensed Massage Therapist, and Reiki Master. He has been coping with chronic upper back pain, neck pain, and rib pain for over seven years, which led him to begin learning anything and everything related to wellness. His goal is to provide others with viable options for pain relief through sharing his personal experiences. In his spare time he enjoys reading, yoga, cooking, and almost anything outdoors. Ryan is also an ambassador for the U.S. Pain Foundation.

Life hacks for living with chronic pain

By Amy Orr, author of Taming Chronic Pain: A Management Guide for a More Enjoyable Life

No one needs to tell you that living with chronic pain is, well, a pain. Everything is just harder: it’s harder to work, harder to sleep, harder to think, harder to eat, harder to get through the day. Those of us who have been living with chronic pain for a long time have developed strategies to cope — little things to make each day just that bit easier.

Here are some of my favorites:

Doing Chores

  1. Slow Cooker

Slow cookers let you throw all of the ingredients in, then forget about it. The meal will cook itself without any further effort from you. This works for preparing meals in advance, for example, setting it at night for the next day’s breakfast.

  1. Batch Cooking

Batch cooking similarly helps with cooking fatigue; when able, make a whole batch of something, then freeze it into individual portions, to be reheated whenever.

  1. Place Items in Reach

Place the items you use more often on accessible shelves, to avoid having to stretch or bend over. This will save you on the bad days, by making whatever chore you’re doing as easy as possible.

  1. Tidy As You Go

Tackle chores in small, bite-size pieces. This avoids unnecessary fatigue, and relieves pressure. If you tidy up as you go, you won’t be faced with a single large task at the end of the day that you have to do, regardless of how you feel.

  1. Hire Help

If there are difficult or bigger chores, consider hiring some help. A cleaner doesn’t have to come every week – maybe you only need someone once a month to scrub the floors. But if it saves you unnecessary pain, it’s worth it.

  1. Prioritize Your Day

Not everything on your to-do list can be urgent. If you’re a busy person, make sure you organize your schedule so there is only one or two critical items within each week. Leave yourself wiggle room for flares or fatigue.

Taking Care of Yourself

  1. Explore Sleep Props

Use whatever you need to give yourself the best possible chance of a good night’s sleep. This could include: a better mattress, ergonomic pillows, cooling pillows, specialty pillows, pregnancy pillows, or bed wedges. It doesn’t matter who it was designed for – if it works, use it!

  1. Grooming Accessories

On those days you can’t manage a shower, avoid feeling gross with products like dry shampoo and wet wipes. If you’re able to shower, a shower chair (or modified lawn chair placed in the shower) can keep you safe. And hair wraps let you avoid having to blow-dry your hair.

  1. Heat Pads & Cooling Packs

There are a lot of different heat pads, ice packs, cooling masks, or combination temperature therapy packs; they come in a range of sizes and shapes, and soothe aches and reduce inflammation. Leave the ice pack and cooling mask in the freezer all the time, and find heat packs that can go in the microwave for quick use.

  1. Comfortable Clothing & Soft Fabrics

Make sure you have at least a few comfy options clean at all times. Soft materials are better, as are stretchy fabrics; yoga pants and soft layers will prevent further physical discomfort. Avoid tight clothes or anything sharp or rough. Don’t be dragged into a fashion debate – wear what makes you most comfortable.

  1. Inflatable Pillow & Fold-Up Chair

Keep a folding or deck chair in your car, as well as an inflatable pillow and blanket. Many travel pillows are compact in size and will fit in your purse. There are also lightweight, portable back supports for chairs, that you can easily transfer from the car to any chair.

Having Fun

  1. Audiobooks

Leave an audiobook playing as a way to distract yourself during pain, or as something to gently lull you to sleep. If you’re struggling to follow the plot, children’s books are perfect for an easy, non-stressful listen.

  1. Set a Time Limit for Events

Socializing is very important for your mental health. For occasions when you want to say “yes”, consider setting yourself a few hard limits to avoid breaching your physical boundaries. For example, set yourself a “must be gone by” time so you can still get the rest you need but participate in the fun.

  1. Google Everything

If you’re going out for dinner, check out the restaurant online beforehand. You can find out what they serve, the seating options, any accessibility issues, and more. You might find alternatives you wouldn’t otherwise have known about, or you may realize you are able to do something you thought you couldn’t. Addressing uncertainty proactively gives you the best shot at success.

  1. Calm Your Nervous System

Finding activities, habits or hobbies that help calm your nervous system will, over time, help you cope with and even alleviate pain. This could be anything – a hot bath, a manicure, a massage, a cuddle, meditating… as long as it makes you feel calmer and more relaxed, it is helping your body.

Medical Care

  1. Pill Organizers & Medication Alarms

A pill organizer (daily or weekly) is a very effective way of ensuring you always have your daily meds with you, and that you don’t forget any. Similarly, medical alarms through apps or via a wearable fitness tracker will keep your medication schedule consistent.

  1. Symptom Diary for Doctors

A simple symptom diary listing date, time, symptoms, severity, and medications will help you and your doctor frame your discussions, and will give you a better understanding of how your body works. It doesn’t have to be long – short notes suffice.

  1. Contact Physicians via Health Portals

A lot of health clinics have online portals for arranging appointments, retrieving test results, asking questions and sending information. Use these as much as you can; they allow you to phrase your questions or concerns in your own time, in your own words.

  1. Personal Trainer with Medical Experience

If you can, find a personal trainer or physiotherapist with a strong medical background, who can show you effective ways to exercise without stressing problem areas. It is particularly important to know how to properly stretch, so even on bad days you can alleviate tension.

Those of us who have been dealing with chronic pain for a long time already know that there’s no such thing as perfect; there is no perfect coping strategy, and every day is different. The important thing with coping strategies is to develop a suite of options for yourself, applicable to a range of situations, so that every day, no matter how you’re feeling, you have something you can do to make it just a little easier for yourself.

Amy Orr is a U.S. Pain Foundation Junior Ambassador and author. Her new book, Taming Chronic Pain: A Management Guide for a More Enjoyable Life, has hundreds of tips just like these. Amy has suffered from chronic pain for most of her life, and has an array of autoimmune disorders. Her work is centered on patient-led advocacy and care, and is based on over a decade of researching chronic pain while managing her own. Check out all of Amy’s work at www.amyorrbooks.com.

 

Pick your pain

By Amber Fonseca

“Pick your poison,” or so goes the expression. But when it comes to living with multiple chronic pain conditions, I think “pick your pain” is more fitting. While I wish that I could choose to lessen my pain or to not have any pain at all, neither quite fits what I mean when I say “pick your pain”.

There are innumerable levels and types of pain: sharp, throbbing, piercing, stabbing, burning, aching, and more. Not all pain is created equally, and neither are the treatments. In fact, many of us with chronic pain find ourselves having to choose between which pain to treat when you have multiple conditions that involve pain, the treatments are different, and often cannot be combined. If you have ever had to choose between a migraine and back flare, you know what it means to “pick your pain.”

If this is you: I see you, and I understand your struggle. When your head feels as though it is going to explode, your back feels as though it is on fire, and your whole body is fighting against your attempts to move… I see you. I see you trying to decide which pain needs treatment the most. I see you frustrated because you need relief from all of your pain, but your medications can’t be mixed. I see you contemplating what will happen if you choose your head over your back, or your back over your head. I see you wishing you could take both medications. I see you considering what might happen if you risk taking both together–knowing it could end badly. Through all the pain, I see you.

Like it or not, a time comes when you must “pick your pain:” pick the pain to treat and the pain you must suffer through. You must pick the treatment that might bring relief, while also knowing that there is a risk that the treatment might not work, or worse– that the side-effects could exacerbate other symptoms. But of course, your ability to function depends on the success of your choice. If you pick your migraine, you risk the chance that your head won’t feel better, or you may be successful in lessening the pain in your head only to discover your mind is alive and racing while your body is locked inside the physical prison of your flared back. If you choose your back pain, you may still be laying flat unable to lift your head, or worse, the pain reliever for your back might make your migraine worse. Roll the dice, play the odds, it’s only one day in the bigger picture of life… Except when it isn’t.

If you are like me, the need to “pick your pain” is more common than just the occasional day here or there. The “right” choice is not always the same option. Some days, the pain I choose to treat is my back, other days it is my migraine. Some days I make the “right” choice and I am able to regain some level of function. Other days, I make the “wrong” choice and I lose the ability to function at all for that day. To my fellow pain warriors, know that there are others out there going through the same thing. When you have a day where you are forced to “pick your pain” in an effort to conquer your day, know that you are not alone and I see you.

Always take your medications as prescribed, and never mix medications, even supplements, without your doctor’s knowledge and permission. Before your appointment, you can use this online tool from the National Institute of Health to identify pills, or this one to check for interactions between different medications. Learn more at Painmedicine411.org.

Amber Fonseca is a high school English teacher, blogger, freelance writer, and has been a chronic pain patient for more than twenty years. She is also a single mom to a very special little boy with autism. Despite her multiple diagnoses and personal struggles, she has always found a way to advocate, educate, and support others along the way.

The little things that make a big difference in my life with chronic pain

By Diane Talbert, a U.S. Pain Foundation advocate

I’m a “baby boomer,” and I’ve experienced psoriatic arthritis for over 25 years. It’s hard to explain what it’s like to be tired all the time or feel  pain 24 hours a day. The absurd part is that it doesn’t even bother me anymore. I just take my pain pills and go about my day. There are times I do face daily challenges and I know I’m not alone with this.

I remember the good old days when I could just jump out of bed, move furniture, around or even walk a mile. This is not the case anymore: just pushing a grocery cart is a chore. I have learned to educate myself about my disease. I know I need plenty of rest and a healthy lifestyle. I need to drink plenty of water and eat healthy.

Just walking up a flight of stairs can be draining. I decided years ago to find things to make my life easier. When I worked in an office, they always had someone come around to adjust our chairs and our computer monitors to make them more ergonomic. I always thought this was a waste of money until I started working from home–I soon realized that how I was sitting was putting more stress on my body and causing me pain. I was able to have someone from my company adjust my equipment and bring me a lumbar pillow, which has really helped my back.

Have you ever considered what else you could do to make your everyday life easier? Small things can make a big difference. My parents are 85 and they have always had a raised toilet seat–after getting myself one, I can tell you: it’s a secret game-changer. Also invest a jar opener and some type of long-handle reaching device. Both items have come in handy for me more times than I can remember.

Another thing that has made my life so much better is that I had a digital thermostat put in. My body temperature is up and down all day. This device allows me the freedom to adjust my room temperature when I’m stuck in bed all day. I need to conserve my energy on days like this and to me it’s worth it at the end of the day. There is nothing like a piece of mind to keep us going from day to day.

I don’t like admitting this, but I have had to call and have my groceries delivered and someone to clean my home. But I have also realized that there is no shame in asking for help.

Another big help is restaurant delivery services. If you have a pet, have a dog walking service on call for the days when you just can’t do it. Whatever your interests and passions, the rise of the gig economy means it’s easier than ever to find help. Your body will love you for it, and it will greatly benefit your mental health.

At the same time, I know a lot of us don’t have money lying around to make our lives more comfortable in this way, but try and treat yourself when and how you can. When you are in daily pain you need to make things easier for yourself, especially in your home. I work from home now because of my illness, so I need to make my space as comfortable as possible. As I’ve gotten to a certain age, I’ve learned just how important it is to not waste the energy I have.

Diane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has had severe psoriasis since the age of 5. The psoriasis covered over 70% of her body for the first 40 years of her life. She has had psoriatic arthritis for 25 years, but was only diagnosed 12 years ago. Diane presently blogs for Creaky Joints, The Mighty, Medium, Health Union and Patient Rising. She has been featured in Arthritis Today, Everyday Health, Arthritis Foundation, BlackDoctor.org, New York Times, and Health Central. She has spoken in front of the FDA about living with psoriasis and psoriatic arthritis, and was asked to be on a panel with several dermatologists as a patient advocate. She goes to Capitol Hill yearly to lobby and frequently speaks at town hall meetings. Diane ran a support group in the Maryland, D.C., and Virginia area for 10 years. She is also a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis. She loves being a wife, mother and grandmother. She has a great husband (Alvin), who is her number one supporter. She has two sons and four grandchildren. Her oldest grandchild, Nikyla, is attending college at Alcorn State University and wants to become a dermatologist.

 

Locating the right doctor for you: Simple steps to get started

By Janet Jay

Finding a new doctor or other medical professional can be incredibly daunting– not only do you want to find someone good, but you have to also factor in cost, insurance, distance, compatibility, background, and dozens of other factors.

Luckily, knowing some basic search strategies can make your quest much easier and less stressful. Don’t let the pressure of trying to find a doctor keep you from getting treatment. You deserve a good medical team and are within your rights to keep looking until you find the right fit!

The first step is to figure out your specific needs. Maybe you need to find a GP (general practitioner) who has experience managing someone with complex medical issues; maybe you need a physical therapist who understands your particular structural problem; maybe you need to find a rheumatologist to investigate whether you have autoimmune problems. Maybe you’re instead looking for a nutritionist or a biofeedback practitioner!

No matter your target, before you search, here are some things to consider about your constraints and personal preferences.

Insurance coverage.

Like it or not, your insurance coverage is likely to be the most important factor in finding a new doctor. Every insurance plan is different, so make sure to familiarize yourself with how yours works. Does your insurance require a referral to see a specialist? What’s the difference between cost for in- and out-of-network providers? By searching your insurance’s website you should be able to find a list of providers that are covered / in-network for you.

Location. Location is another important factor. Pain can make it difficult to travel long distances, so finding someone nearby is, of course, ideal. That said, if you have a rare or complex disease, you are likely willing to travel long distances for the right care. In any case, make sure you are comfortable with the provider’s location. Keep in mind, too, the frequency of visits you’ll likely need. If it’s a one-time consult, you might be able to drive a little further to see a top-notch expert. If it’s weekly physical therapy, those miles and hours can add up quickly and cause more symptoms than they relieve.

Accessibility. This can cover range of factors. Perhaps it’s making sure the office has wheelchair access. Maybe it’s checking on their open hours. Do they offer evening or Saturday appointments so you can work around your schedule? Another thing to look for is whether they have long time wait times for being seen–even the best clinician isn’t much help if you can’t get to them in time to address your immediate needs. Finally, seeing a provider who has an electronic

medical system in place for emails and scheduling can be hugely helpful; consider asking about how they will communicate with you.

Experience. You deserve a provider who has experience with your condition. Through your insurance plan’s directory, or through the provider’s direct website, you should be able to access information about their training, education, years in practice, and clinical interests. Don’t be afraid to ask questions to ensure you’re seeing the right person for your health.

Personal characteristics. It’s OK to want to find a provider you feel comfortable with. Maybe you would prefer a female provider, because you’ve felt dismissed by male providers in the past. Perhaps you want someone who speaks Spanish because that’s your first language. Feel free to call and ask questions about the provider’s background.

Once you have a list of covered doctors and know what you’re looking for, start Googling. There is a

lot of useful information to be found on databases like Healthgrades.com, Vitals.com, or U.S. News & World Report’s Doctor Finder directory.

After finding information on your desired provider, here’s what you should look for:

  • Hospital affiliation
  • Educational background
  • Professional experience
  • Languages spoken
  • Awards and recognition
  • Board certifications in specialties
  • Check for any negative reports in your home state’s licensing website (Google “verify a medical license in [STATE]”)
  • Other patients’ comments and reviews
  • Any press coverage or interviews they’ve given
  • Online / social media presence

When you find someone who looks like they might be a good fit, first contact them to make sure they’re accepting new patients and that they are indeed covered by your insurance. (Just because a page on your insurance website says “accepting new patients” does not mean they actually are. You can rely on those databases for the broad strokes but always need to confirm specifics.)

If you’re looking for a mental health professional or a doctor for a more personal issue, you may want to try to get them on the phone before you make your first appointment in order to get a feel for whether they may be a good fit. Sometimes a conversation is enough to tell if you have a rapport with a medical provider.

And remember: you have the right to have a doctor who listens to you and who you feel confident about. If you don’t like your doctor, you can always use these steps to find one who is a better fit.

Janet Jay has been dealing with chronic pain and depression since she was in early high school and is currently recovering from surgery for a herniated disc. Despite these challenges, she’s spent over a decade working in communications and freelance journalism, where she has been published in outlets like Maxim, Vice Motherboard, and Popular Science. She is involved in advocacy work, volunteering and her local chronic pain community, and has far more first-hand experience finding doctors than she wishes she did.

How pain impacts sleep

By Lisa Ann Smalls

Pain and sleep are two vital functions our bodies need to work effectively. Pain lets us know something is wrong somewhere in our system. Sleep gives or bodies the chance to restore and revitalize itself. The problem when pain impacts sleep is that it can become a vicious cycle – chronic pain can lead to a sleep debt, and not enough sleep can make pain worse.

The problem with pain and sleep

People with pain experience disruptions to sleep that are 80 percent worse than the rest of the population. Unsurprisingly, pain can make it difficult to fall asleep as well as stay asleep. According to a poll conducted by the National Sleep Foundation, people suffering from chronic pain have a sleep debt of 42 minutes each night due to their pain, and people with acute pain have a sleep debt of 14 minutes per night. Over time, this sleep debt accrues. It can exacerbate a person’s pain, wreak havoc with their immune system, and even increase their risk of other chronic conditions, like obesity, heart disease, and diabetes.

Why does pain increase at night?

For starters, at night, there are fewer distractions from pain. A person with pain who may be able to distract themselves with activities during the day—as they try to quiet down their mind and body at night—may suddenly be more aware of the painful symptoms they’ve been avoiding all day.

Hormones may play a role as well. Our bodies run on a 24-hour cycle called the circadian rhythm. This rhythm dictates the fluctuations in our bodies’ chemicals and hormones. One of the hormones that drop at night is cortisol. Made by our adrenal glands, cortisol regulates blood pressure, reduces inflammation, and helps us manage stress. As cortisol drops, our white blood cells get to work fighting infections in our body, which can cause symptoms of infection or painful conditions to surface.

Research is ongoing into the link between sleep and pain and their impact on each other, with some showing a greater connection between cognitive arousal and sleep than pain and sleep – even for chronic pain sufferers.

How to promote better sleep

Making sleep a priority is the first step to improving your night’s rest. Even among those with pain, a greater motivation to get sleep was linked with longer sleep periods and better quality sleeping.

Making sure your mattress is supportive and comfortable is key. There is no “one size fits all”when it comes to the best mattress for pain. However, it is worth noting that a study done in 2003 looked at the firmness of mattresses for non-specific, low-back pain with results showing a medium-firm mattresses to be better than something that was extra-firm.

Stress reduction techniques such as mindfulness or meditation, can help prepare both the mind and body for sleep, triggering a relaxation response that help us to fall asleep and stay asleep for longer.

Just as exercise can help you manage pain, it can also aid sleep at night by decreasing arousal, anxiety and positively supporting circadian rhythms. Try to keep exercise to two or more hours before bed however, as if less, it can disrupt sleep.

Other “sleep hygiene” tips include creating a dark, quiet space using eye masks or earplugs; setting the temperature to the optimal 60-67* for sleeping; and setting a regular bedtime and wake up time to create a more standard routine.

Remember—sleep is vital to pain control! Prioritize your rest.

Lisa Smalls is a freelance writer from North Carolina who regularly covers the topic of sleep health. After seeing her mother, who was diagnosed with fibromyalgia in 2014, struggle to get adequate sleep due to the chronic pain she experienced as a result of her condition, Lisa became passionate about understanding the relationship between pain and sleep health. Now she loves educating others on the topic through her writing.

 

 

Clearing up 12 common myths about medical cannabis for pain

Ellen Lenox Smith is Co-Director of Medical Cannabis for U.S. Pain and a U.S. Pain Board Member. She lives with two rare conditions: Ehlers-Danlos Syndrome and sarcoidosis. After years of struggling to find pain relief without side effects or adverse reactions, she discovered medical cannabis.

A retired school teacher, Ellen is now a renowned patient advocate and works tirelessly to encourage safe, fair access to all treatment options, particularly medical cannabis. She has spoken at numerous conferences on cannabis access and been featured widely in the media on the topic. She is also the author of two books: It Hurts Like Hell!: I Live With Pain—And Have A Good Life Anyway and My Life as a Service Dog.

Below, she clears up common myths surrounding medical cannabis for pain.

Myth #1: All  people who use cannabis must be “stoned” or “high.”

Truth: this only happens if you use too much medication. People living with pain get pain relief; people using it socially and not in pain, get high! In addition, medical cannabis is made of two components: THC, which causes the mental effects associated with feeling high, and CBD, which produces bodily effects. Various strains of cannabis have different ratios of THC and CBD, which means that not all strains create as much of a “high” feeling.

Myth #2: Everyone who uses the same strain experiences the same result to using it.

Truth: Each body can have a different reaction to each strain, even if you have the same medical condition. Patience is needed. Don’t give up on your first try–each person must find the strain that best works for their bodies.

Myth #3: All types of cannabis have a lot of THC in them and will make me feel stoned.

Truth: There are many strains of the plants to choose from. Some have a higher ratio of THC than others and others have much lower THC and higher CBD. So take time to do your research before deciding which strain might be best for you! The professionals at your local medical dispensary are also a good resource.

Myth #4: There are no risks with using medical cannabis.

Truth: While medical cannabis is widely considered to be much safer than many medications, it does come with risks. Be especially careful for when you ingest cannabis, as it will not activate immediately and can take up to even hours before you feel the effect. So if you take a bite of that cookie and think you feel nothing, don’t eat the rest or you risk ingesting too much and being very high, which can cause a bad reaction, like anxiety.

Myth #5: When I ingest cannabis, it will leave my system quickly.

Truth: ingesting your medication means it not only takes longer to activate but also takes longer before it leaves your system. This is a good reason to take it in small doses to get to your right dose for pain relief and not cause yourself to feel high. If you take too much, don’t panic. It will wear off. but it can take hours.

Myth #6: Using medical cannabis will just make me feel tired.

Truth: There are two main categories of medical cannabis strains. The indica strains have higher CBD and lower THC counts. They can help with increased mental and muscle relaxation; decreased nausea and acute pain; and increased appetite and dopamine. Indica is typically preferred for night-time use. Meanwhile, the sativa strains have lower CBD and higher THC counts. They can help with anxiety and depression; chronic pain, and increased focus and serotonin, Sativa is usually preferred for daytime use.

Myth #7: I would have to smoke medical cannabis if I used it for pain.

Truth: Many do not smoke cannabis for their medicine. You can, for example choose to vaporize, take pills, tinctures, topicals, patches, oil, edibles and even use drinks.

Myth #8: My doctor will write me a prescription to use medical cannabis.

Truth: In most states, a doctor would need to sign a from identifying and confirming you have a qualifying condition, not a prescription. Typically, you would then use this documentation to apply for a medical cannabis card from your state.

Myth #9: No matter what state I travel to, all laws are equal for medical cannabis use.

Truth: Each state presently has their own laws, some only allowing CBD from the hemp plant, three with no laws at all, and the rest with some form of a medical cannabis program established. Educate yourself on your state’s specific laws and be cautious when traveling between states.

Myth #10: I will need to go to the pharmacy and order my medical cannabis.

Truth: In some states, you are allowed to grow your own or have a caregiver grow for you. For others, you go to the dispensary to purchase your medication.

Myth #11: I will have my medical cannabis covered by insurance.

Truth: Only the country of Germany presently covers the cost of cannabis. For the rest of us, it is not covered–yet. Only once the federal government gets cannabis out of Schedule I and all states allow a medical cannabis program,  will insurance coverage for medical cannabis be possible.

Myth #12: I am sure I will be able to qualify since I live with pain.

Truth: Many states have very specific lists of conditions that qualify for medical cannabis use. If your specific condition is not listed as a “qualifying condition” and your state does not include the wording of “chronic pain,” you may have difficulty being allowed into the program. However, some states are beginning to allow the doctor to decide what patient should be using cannabis, which helps many get into the program.

To learn more about medical cannabis for pain and start advocating for access in your state, visit https://uspainfoundation.org/medicalcannabis/. To learn more about Ellen and her work, visit http://ellenandstuartsmith.squarespace.com/.  

A Q&A about opioid-induced constipation

A Q&A with Jeffrey Fudin, BS, PharmD, FCCP, FASHP, FFSMB

Opioid medications are rarely the first choice of individuals with chronic pain. But for people with severe pain who have not found relief from other therapies, opioids may be necessary. Unfortunately, opioids can have a number of side effects, including opioid-induced constipation or OIC.

Below, Dr. Jeffrey Fudin talks about OIC, how it differs from regular constipation, and treatment options.

1. Why is OIC important to treat?

“Most patients that experience opioid-induced constipation (OIC) try and treat it themselves first. They’re embarrassed to bring it up with their doctors, so they take over-the-counter (OTC) medications, which often leads to frustration because they don’t treat the underlying cause of their constipation.

Properly diagnosing and treating OIC is important for several reasons. First, OIC can cause distress and discomfort for patients, leading to more doctor’s visits, more absences from work and decreased productivity. Worse yet, serious complications such as aspiration, possibly leading to painful reflux, difficulty breathing, or aspiration pneumonia, and/or bowel perforation, fecal impaction and hemorrhoid formation can occur if left untreated. When uncontrolled, OIC can lead to longer hospital stays, increased emergency department (ED) visits and increased readmissions. Ultimately, treating OIC can help the patient return to their normal quality of life, as well as reduce the burden on the health care system.”

2. How common is OIC among chronic pain patients on long-term opioid therapy?

“OIC affects between 40 to 80 percent of chronic pain patients on long-term opioid therapy. Of which, 77 percent report suffering from OIC for at least one year and 43 percent for more than three years.”

3. Is OIC managed and treated the same as other types of constipation?

“While patients and health care providers might try to treat OIC the same way as other types of constipation, such as using laxatives or making lifestyle changes (e.g., increasing fluid and exercise), it is often ineffective. Because OIC occurs as a direct result of the way opioids work in the gut, it must be managed differently. Targeted OIC treatments such as PAMORAs (peripherally-acting mu-opioid receptor antagonists), may be the most effective option for treating the root cause of OIC and providing relief to patients. PAMORAs are not laxatives; instead they actually block the problem that causes constipation.”

4. Why don’t patients with OIC generally respond to laxatives?

“Laxatives do not effectively target the underlying cause of OIC – which is the binding of opioids to receptors in the gut. Therefore, a medication that targets this may prove more effective in providing relief by prevention. Also, according to data from a national survey, one of the biggest challenges for chronic pain patients suffering from OIC is that medications to relieve this problem often don’t work quickly enough to relieve their constipation symptoms, cause undesirable side effects like cramping, and are unpredictable in terms of when or how drastically they will work after leaving their home. As a pharmacist, I’ve noticed that the benefits of flexible dosing and predictability are important to many patients.”

5. What types of medications are most effective in helping to treat OIC?

“PAMORAs (peripherally-acting mu-opioid receptor antagonists), are typically most effective for treating OIC. These medications are designed to target the action that decreases opioid-induced constipating effects without decreasing the effectiveness of opioids to treat pain. However, it is important for patients to speak with their physician or pharmacist about OIC and find a treatment plan option that works best for them.”

6. What should patients know about medications for OIC?

“It is important for patients to know that they have options when it comes to treating their OIC. Medications used to treat OIC are different from over-the-counter (OTC) laxative medications. There are several PAMORAs available to treat OIC; however, it’s important to speak with your doctor or pharmacist about which option is right for you. Consider other medications you may be taking, and how quickly you want to experience a bowel movement. There are some PAMORAs available that vary in dosage, oral absorption, and the way they are metabolized within the body. For example, methylnaltrexone does not have any known drug-to-drug interactions, can be taken orally or by injection, and offers quick and predictable relief.

It is always important for patients to keep an open-line of communication with their HCP regarding symptoms and medication use and effectiveness.”

Dr. Fudin is the owner and managing editor for www.paindr.com and founder and CEO of Remitigate LLC, which offers software to doctors looking to more safely prescribe opioids. He has participated in developing practice guidelines for use of opioids in chronic noncancer pain (American Pain Society, American Academy of Pain Management collaborative) and participated in national (U.S. Department of Health and Human Services) and international guideline development for various pain types, including but not limited to, arthritis, fibromyalgia, and palliative care. He has also participated in the development and co-authored consensus guidelines for the treatment of opioid-induced constipation (OIC) and for urine drug monitoring.

Dr. Fudin practices as a Clinical Pharmacy Specialist and Director, PGY-2 Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany, NY.

 

 

 

This post was created through a collaboration with Salix Pharmaceuticals.

Voices from the Hill

By Jorie Logan-Morris and Jeannette Rotondi

Every year in February, advocates for migraine and headache disease come together in Washington, D.C., for an event known as Headache on the Hill (HOH). HOH is organized by the Alliance for Headache Disorders Advocacy (AHDA) and has been running now for 12 years.

During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.

HOH 2019 just recently passed, and we all had an amazing experience together. We also had a record number of advocates attending this year: 160 people turned out to advocate from 46 different states.
Our “asks” that we presented to Congress and staffers were two-fold this year:

  1. Our first ask requested an allocation of National Institutes of Health (NIH) pain funding specifically for migraine and headache disorders. We asked NIH Director Francis Collins and Congress for the HEAL Initiative to create comparable RFA (Resource Family Approval) programs focused on migraine and headache disorders research in the same way they have non-opioid pain therapy programs specifically for back pain and hemodialysis pain. This does not require more funding, but instead asks for the existing budget to be reallocated in proportion to the disease burden.
  2. Our second ask was to create a blue book listing specifically for migraine and headache disorders in order to make Social Security Disability Insurance (SSDI)more accessible to people with migraine or headache disease. Per the current standards, a patient with one of those diagnoses applying for SSDI has to apply under the unfair pretense of epilepsy, a very different neurological disorder that is incomparable to migraine.

Since HOH 2019 has passed, we asked several attendees and members of the U.S. Pain Foundation what made the HOH experience so special and memorable for them, and here’s what they had to say:

“Something especially meaningful to me about HOH, is that I walk away each time with new found friendship(s)… It is special to be a part of such an incredible family of pain warriors. I couldn’t help but feel somewhat on top of the world… The gravity of how many lives we have the potential to impact by showing up and having our voices heard began to hit me as I ventured the hallways at the Hill… Through this experience, I fell in love with advocacy and to it made a life-long commitment.”

– WI Advocate Mia Maysack (third from left) with fellow advocates

“It was empowering to connect with others who understand the unique challenges of living with migraine disease, to join our voices and share our stories with lawmakers. I hope telling my story will help bring policy change. It has already brought change within me. I now know that I am not alone and that my pain does not define me.”

– GA Advocate Peggy Stumhofer, pictured with Rep. Joe Wilson from SC

“This was my second year attending HOH. This population of people are some of the most genuine, caring people I have ever met. Everyone at this event that is dealing with migraine and cluster headaches are warriors. We stood together, supporting one another, and collectively used our voice to not only represent ourselves, but also the millions of people around the world with migraine and cluster that are unable to use their voice. Being part of the U.S. Pain family makes this experience even more enriching, as these people become part of your tribe. It’s comforting to know that none of us are alone in dealing with this disease. Together we are stronger.”

– Dr. Melissa Geraghty, pictured left at the office of Rep. Lauren Underwood (IL) with fellow Advocate Chloe Vruno

“For a long time, I wanted to hide behind my illness. Having chronic migraine makes me different. But now that I am much older, I see migraine is a part of me now — but not all of me. If I could help just one person out in the world by sharing my story and advocating for migraine and research, then it’s worth it to me. And that’s what Headache on the Hill represented to me….For the first time in a long time, I felt “normal” I wasn’t the odd person out. I was with people like me from all over the world who had come together to with such a deep fire and passion and pain for something they believed to the core in. It took my breath away and I was honored to be a part of it.”

– AL Advocate Ashley Greene (right) pictured with Congressman Gary Palmer & fellow advocate Tracy Karnes St. John (left)

“HOH to me was being able to put myself in charge, instead of my invisible illness being in control. To know I have that power and I can advocate for myself is life changing. Getting to share this experience with people who live with the same disease as you and do not have to explain how you are feeling is a relief. These people will become amazing friends and support to you. The entire HOH experience is extremely tiring and completely worth every single second. I am honored to have played a small part.”

– AL Advocate Tracy Karnes St. John

“I’m glad I was able to attend Headache on the Hill 2019.  It was very inspiring seeing all the other advocates and it was a great experience going to the capital and  meeting with my senator and representative. I hope to have the opportunity to do it again next year, if I am able healthwise.”

– ME Advocate Ernest Merritt at the office of Rep. Chellie Pingree

“For me HOH means empowerment. Empowerment through supporting one another, identifying important needs for our community, being armed with education and the facts to achieve these goals, and continued motivation to ask for what we need with other like-minded individuals. By participating in this event we are taking a lead in our personal care and how the migraine and headache disorder community will receive care. We are utilizing our voice for those unable to participate.”

– U.S. Pain Outreach and Events Specialist and NJ Advocate Jeannette Rotondi at Advocacy Training with fellow VA Advocate Jorie Logan-Morris

“Headache on the Hill is such a rewarding experience during which I am proud to call myself an advocate and migraine warrior. It’s amazing to meet up with friends I’ve made over the years participating in online advocacy, as well as making new friends during the HOH event itself. Knowing I’m a part of something bigger in an effort to help the millions of other migraine and headache disease patients out there is an incredible honor. I was heartbroken this year that I had to bow out of HOH events early due to bronchitis, but being surrounded by so many people who understand the health battles we all face and offer their authentic compassion makes up for it. This is truly a time when I can come together with my “tribe” to exercise one of my mantras: “turn your pain into your purpose!”

– VA Advocate Jorie Logan-Morris

This article was reprinted courtesy of Migraine Mantras, a blog dedicated to living mindfully and holistically with migraines, mental illness, and other chronic illnesses. Jorie Logan-Morris is founder and owner of Migraine Mantras and a U.S. Pain Advocate. Jeannette Rotondi is a blogger for Migraine Mantras and serves on staff at U.S. Pain as its Outreach and Events Specialist.

Understanding paroxysmal extreme pain disorder

By Reese Jones

Rare Disease Day was last month, but it’s always a good time to raise awareness about unique disorders.

Paroxysmal extreme pain disorder, or PEPD, is a little-known and discussed illness — even among people that are affected by chronic pain. Characterized by skin redness, flushing, and severe pain attacks in various parts of the body, this debilitating condition has been documented by scientific literature and only currently affects 80 individuals, according to a report by the National Library of Medicine. Like many other rare diseases, PEPD is generally thought to be caused by a genetic mutation. This condition often manifests from infancy all throughout a patient’s life, while other studies have pointed to the likely possibility of it being felt even in utero.

Let’s take a closer look at this exceptionally unusual pain disorder and shed further light on PEPD’s history, symptoms, causes, and treatments.

A brief history

PEPD was first described in 1959 by medical researchers who noted their subjects’ severe moments of intense burning pain in the rectum, eye, and jaw. It was only in 1972, when Dr. R.E. Dugan conducted his own research into the disease, that the disease was named—as familial rectal pain syndrome.

This label remained in tact in journals and medical practice for 33 years. Clinicians then resolved to rename it as PEPD in 2005, following patients’ disapproval of the original name and how it ignores the other components of the disease’s symptoms.

“Worse than labor”

As mentioned above, PEPD is characterized by sudden, episodic attacks of burning pain in the rectum, ocular, and mandibular areas of the body. Sometimes, the location of these attacks can relocate as a person suffering from PEPD ages. As most patients experience the disease’s onset in the neonatal period of their lives, it begins to manifest through flushing on one side of the face – often accompanied by a glazed expression and irregular heartbeats. Soon, pain will begin to be felt in lower parts of the body. These attacks are often triggered by bowel movement, which is why many children diagnosed with PEPD also develop constipation in fear of the pain.
Most patients begin with pain in the lower body, and many will move on to experience the same aches in their head and face, most often near their eyes or jaw. Flushing and redness accompany these attacks, which usually correspond with the center of the pain attack. These attacks typically last between a few seconds to several minutes, but more extreme cases have been known to last for hours. Triggers can include sudden changes in temperature, spicy food, cold drinks, and even emotional distress, along with taking medicine and bowel movements. The pain experienced during these attacks is significant: as a study published in the Journal of Neurology explains that patients who have given birth rank PEPD pain as even more severe than labor pain.

In addition to the pain and flushing, non-epileptic seizures and a slow heart rate are also common among PEPD patients.

But what exactly is the cause of these symptoms? Research into the disease have pointed to a mutation in the SCN9A, wherein the voltage-gated sodium channel NaV1.7 experiences an inability to deactivate. This causes prolonged action potentials and repetitive firing, which then dramatically increases the sensation of pain as well as activity in the sympathetic nervous system. The same gene, when mutated differently, has also been found to cause the opposite phenomenon — the total lack of pain.

Diagnosis, treatment, and management

Like many rare and genetic diseases, diagnosis for PEPD heavily relies on a patient’s medical history, physical exams, and laboratory test results.

Once diagnosed by a healthcare professional, treatment is typically administered through carbamazepine, a drug that has been found to be at least partially effective in lowering the severity and number of pain attacks. Other anti-epileptic drugs, such as gabapentin and topimarate, have only had limited effects.

In terms of managing this disease, as with many rare diseases, close and detailed counseling is crucial in receiving proper treatment. For more information about PEPD, click here.

Reese Jones does freelance data analysis for various health institutions and insurance companies. Her spare time is spent contributing to blogs, tending to her small garden, and caring for her grandmother who has looked after her since she was young. 

 Holistic approaches to chronic pain

By Deborah Ellis, ND, CTN

If you’re like me, and millions of others, you’ve probably suffered with chronic pain for a year or longer. Chronic pain affects 50 million Americans, 20 million of whom have high-impact chronic pain. It has been linked to increased risk of major mental conditions including depression, anxiety, and post-traumatic stress disorder. Science understands a body in chronic pain continually sends stress signals to the brain, leading to a heightened perception of not only the pain itself but also the perceived level of threat. It’s a vicious cycle that’s hard to break or control.

When a person is diagnosed with pain, the first line of treatment is typically pain medication. But while these medications may work for some people, in others, the side effects—ranging from nausea to heart complications—may outweigh the relief.

For patients looking to explore a holistic pain management program, whether alone or in tandem with traditional medicine, there are a number of options to consider.

Let’s review a few of the more common holistic strategies available today.

  • Acupuncture
  • Chiropractic
  • Exercise
  • Massage
  • Stress-reduction techniques like mindfulness and meditation training
  • Vitamin or herbal supplements
  • Aloe vera

Acupuncture

Acupuncture, common in Chinese medicine, involves inserting thin, tiny needles into certain points of the body. Traditional Chinese practitioners believe acupuncture balances the flow of energy or life force — known as qi or chi. Western practitioners see it as a way to stimulate nerves and muscles in a way that promotes pain relief and healing. Many  practitioners are now beginning to recognize the potential benefits of acupuncture.

Chiropractic care

A chiropractor’s main objective is to realign and manipulate the spine and neck in a way that relieves pain, promotes healing, and improves overall function. There are many different styles of chiropractic care, and chiropractors use a wide range of strategies, techniques, and products as part of treatment. It’s important to find a reputable, experienced practitioner and to be sure to understand the risks and benefits in advance of treatment.

Exercise

Exercise is one of the most important ways you can improve your overall health and, often, even manage pain. No matter how much pain you are in, there is almost always some type of exercise you can do–even if it’s just gentle ankle movements or hand squeezes. If you have limited mobility, consider finding small exercises you can do while seat or lying down. Remember to start small and go so slowly. Some good examples of exercise for those with chronic pain include: walking, swimming, Pilates, Tai Chi, Yoga, and strength training. Talk to your doctor, a physical therapist, an occupational therapist, and/or a personal trainer about what is best for you. 

Massage

Therapeutic massage has proven to be beneficial for a number of chronic pain conditions. In addition to relieving pain by relaxing painful muscles, tendons, and joints, massage can also help decrease stress and anxiety, which can increase pain. There are a wide range of massage styles, including Swedish, deep tissue, sports, Shiatsu, trigger point, and reflexology.

Stress-reduction techniques, like mindfulness and meditation training

Mindfulness and meditation help quiet the nervous system and lower stress, which decreases muscle tension and can lead to lower pain levels. There are many styles of meditation and mindfulness training, such as techniques that focus on breathing, progressive relaxation, or engaging in guided imagery.

Vitamin or herbal supplements 

There is an incredible array of vitamin, herbal or plant-based supplements to explore for pain relief. In some cases, these supplements may support overall well-being, which can, in turn, help reduce pain. In some instances, supplements may provide more direct relief by reducing inflammation or improving joint health. Examples of vitamin supplements include B vitamins, which are thought to support nerve health and vitamin C and D for bone health. An herbal or plant-based example would include turmeric or aloe vera.

Aloe vera

Natural aloe vera gel contains more than 200 biologically active constituents, including calcium, chromium, copper, iron, magnesium, manganese, potassium, selenium and zinc—that provide essential nutrients and help boost metabolic function.  It contains 20 of the 22 essential amino acids and the vitamins A, C, E, choline, folic acid, B1, B2, B3, and B6. It even contains B12, a vitamin that typically is only found in animal foods.

Aloe vera’s nutrients, as well as its anti-inflammatory and analgesic qualities, may be helpful in relieving muscle and tendon pain. The gel is sometimes used topically in sports medicine to soothe achy muscles, but taken orally, the anti-inflammatory ingredients may also help with pain.

It’s important to note that if you’re using aloe vera to reduce inflammation, you should also rebalance your diet. By eliminating unhealthy foods, aloe vera has a better chance of working. To learn more about aloe vera products, including topical and drinkable versions, visit  https://painsmarts.org/?u=4everaloe.

There is no one-size-fits-all

Whatever therapy you choose, it’s vital to remember that there is no one-size-fits-all approach to pain management. Because they are less invasive and come with fewer risks, complementary therapy options can be a good place to start. Keep an open mind and talk with your provider about the different options available to you.

This post was created through a collaboration with AloeVeritas. Please remember to talk with your healthcare provider before starting or stopping any treatment.

Deborah Ellis is an independent lifestyle coach with AloeVeritas and a certified traditional naturopath by the American Naturopathic Certification Board. She lives with late-stage Lyme disease, chronic fatigue, chronic pain, and fibromyalgia.

AloeVeritas is a global health and wellness company that first launched in Europe, then the United States in March 2018. They have partnered with PainSmarts to conduct the largest and most comprehensive natural pain relief study in the world. If you would like to participate or would like more information about the study or AloeMD, please go to: https://painsmarts.org/?u=4everaloe or contact Deborah Ellis, ND, CTN, at Delyn.Ellis@gmail.com. 

 

 

Managing fibromyalgia in children

By Brent Wells, DC, a chiropractor and founder of Better Health Chiropractic in Anchorage

If your child feels tired and achy, you may not worry initially. After all, there’s nothing urgent about what seems to be mild, general discomfort. However, if your child is constantly in pain, exhausted, having trouble sleeping, and experiencing intense moods, he/she may have fibromyalgia.

This condition is fairly common in adults, but parents and clinicians may overlook the possibility of juvenile primary fibromyalgia syndrome — that is, fibromyalgia in children.

Juvenile fibromyalgia symptoms to watch out for

Fibromyalgia is a chronic condition characterized by pain and fatigue. According to experts, children will often describe this pain as “stiffness, tightness, tenderness, burning or aching.” This pain can last for months and is often accompanied by other sympt

oms that affect a child’s overall well-being, energy level, and emotional health, including:

  • Tender spots on muscles
  • Difficulty sleeping and fatigue
  • Aches, including stomachaches and headaches
  • Lack of focus or memory
  • Anxiety and depression

If your child is experiencing these symptoms, you should see a doctor. There’s not one test to confirm it, so he/she will go through a range of tests to rule out other conditions.

Unfortunately, there is no one “cure” for fibromyalgia, which can be frustrating for patients, especially children. If left untreated, symptoms can lead to issues at school or making friends. Many parents describe this as a “vicious cycle” where symptoms continue to feed the condition.

Experts still aren’t sure what causes fibromyalgia or how it develops in the body. Some believe that mixed-up pain signals in the brain cause greater pain chemicals and/or overactive pain receptors. Others think it might be triggered, in part, by an emotional event like an illness, injury or psychological stress. But even if the cause involves emotions, the pain is still real.

How children can cope with fibromyalgia

It’s important to create a support team and get your child’s primary care doctor, pain specialist, psychologist, physical therapist, and teachers on board. The more people are aware of your child’s condition, the more they can help him/her cope with symptoms at home and school. You may also want to look for pain support groups near you, for both your child and you as a parent.

Your doctor can help you decide whether medication, such as anti-inflammatories, antidepressants, or nerve pain medications, may be right for your child. He or she also may recommend therapies like injections or topical creams. In conjunction with these interventions, your doctor will probably prescribe treatments like physical therapy and behavioral changes, which are crucial to long-term management of fibromyalgia.

Let’s go over some nonpharmacological strategies for coping with fibromyalgia.

Five strategies for improved symptoms

Although fibromyalgia may disrupt your child’s life, affecting school and friendships, you may be able to improve your child’s quality of life with these natural therapies and changes. Of course, there’s no cure for fibromyalgia, but by managing symptoms, you can help your child get back to some sense of normalcy.

  1. Get moving!

Exercise can be incredibly valuable for managing your child’s fibromyalgia symptoms. Exercise can relieve muscle stiffness and tire out the body physically so that your child can fall asleep more easily. In particular, pool exercises have been shown to help patients because the warm water can have a soothing effect on pain and also promote blood circulation.

Consider signing up your child for swim class to get regular exercise that is both fun and good for symptoms. Start with limited intervals of exercise at first, and slowly increase them as symptoms allow. Aquatic physical therapy can be extremely beneficial for patients whose fibromyalgia is too severe for regular pool activities.

  1. Incorporate meditation methods

While your child may not be interested in meditation, try to incorporate some of the practices in your child’s daily life. After playtime, encourage your child to take a moment to relax and reset. In addition, teach your child how to use relaxing breathing exercises when he/she feels overwhelmed during school or before bed.

Studies show that meditation can help reduce fibromyalgia patients’ stiffness, anxiety and depression. In the least, promoting a stress-free environment and creating a sense of relaxation will help your child feel less anxious.

  1. Say goodnight to fibromyalgia

Your child’s sleep routine is essential for improving fibromyalgia symptoms. Chart out the best routine for your child together. Make sure he/she goes to bed at the same time every day and start “sleep-ready” habits an hour before bed. This routine could include a break from screen time, reading a story together, listening to a relaxing song and/or taking a hot bath. Promoting a relaxing environment will help your child get to sleep.

Make sure you’re not giving your child food late at night, especially items with any caffeine or sugar. Also, be sure take away tablets and cell phones. The blue light can wake up your child instead of helping him/her get sleepy. Sufficient sleep is essential to managing pain.

  1. Change your child’s diet for success

Some experts recommend following an anti-inflammatory diet to prevent aches and pains. In general, an anti-inflammatory diet is based on the Mediterranean diet, which emphasizes fish, fish, vegetables, whole grains, and olive oil.

Update your child’s lunch to include a handful of nuts, or add an apple for a snack. Anytime you can add fruits and vegetables to his/her diet, do it! This boost of nutrients will fuel your child for success. Try to limit junk food as well, which has no value and could actually inflame your child’s pains.

  1. Schedule your child for a physical therapy session

Your child could benefit from seeing a physical therapist or chiropractor near you. Recent studies show how physical therapy or chiropractic can have a positive impact on fibromyalgia patients. Finding the right physical therapist is important. Call in advance to ensure they have experience with fibromyalgia and/or with children. Specific exercises in physical therapy can help to improve your child’s core strength and incorporate techniques to soothe muscle aches and pain.

Similarly, regular massage therapy sessions with an experienced masseuse can improve your child’s exercise, sleep and mood.

Talk to your doctor

A fibromyalgia diagnosis can be challenging, but doesn’t have to take over your child’s life. It’s a good idea to talk to an expert to come up with the most effective care plan for your child, one that ideally includes a diverse range of strategies, like those listed above. Together, you can talk about your child’s specific issues and needs, and figure out the best way to improve symptoms.

 

About Dr. Brent Wells

Dr. Brent Wells is a graduate of the University of Nevada where he earned his bachelor of science degree before moving on to complete his doctorate from Western States Chiropractic College. He founded Better Health Chiropractic in Anchorage in 1998. He became passionate about being in the chiropractic field after his own experiences with hurried, unprofessional healthcare providers. The goal for Dr. Wells is to treat his patients with care and compassion while providing them with a better quality of life through his professional treatment.

Understanding constipation with pain medications

U.S. Pain Foundation collaborated with Salix on a survey of 441 adults to better understand the challenges of constipation due to opioid therapy. Here are some of the findings from that survey.

How I refused to allow pain to stop me from traveling

Smith aboard a cruise ship.

By Anne M. Smith, owner of Travel & Events Extraordinaire and a U.S. Pain ambassador

When I was first bombarded with multiple pain conditions nine years ago, I was completely overwhelmed, and there are still days when it tries to overtake me. As a travel agency owner and event manager, I have had to completely restructure my life, my business and, more importantly, the way I travel.

To understand the difficulties I face, you can think of my nervous system wiring as being totally rerouted. It is akin to a highway construction manager putting up detour signs for my nerves all throughout my body—they are confused with which exit to take. So, they have gone haywire, leaving central nervous sensitization in its path and my pain receptors are all on high alert. Couple that with referring pain and we have a map of tangled highways, streets, and roads going around in an endless cloverleaf exit ramp.

Just the other night, I asked my husband to calculate my average pain level from nine different sources of pain. It was determined that I constantly stay at a 6.9, all triggered by the simplest of things like writing, typing, sitting, standing, walking, rolling over, and sleeping.

With that in mind, when I travel, whether for work or pleasure, every decision from beginning to end is factored around my pain. I have to think about how I am going to get there, where I am going to stay, how will I get around, how far can I walk, how long can I stand, how long can I sit, and will I be a disruption to anyone around me if I need to get up and walk, etc.

If I am traveling by car, the immediately impacted body parts include my hands (carpal tunnel), elbows (cubital tunnel), shoulders (bilateral scoping surgeries), neck (anterior cervical disc fusion C3/C4), lumbar spine (L4/L5/S1 for degenerative disc disease), and bilateral knees from both being replaced (right one most recently in May of 2018). Earlier this month, I re-learned that about one hour is my maximum for gripping the steering wheel. Unfortunately, the drive to Philadelphia for a recent trip was two hours! The last hour was filled with electrical shooting pains from my hands to elbows and up to my arms. This triggered my neck, so that was also hurting.

Because I was driving, I was only able to take 800 mg of Tylenol. Upon entering my hotel room, I took my stronger pain meds and allowed the hot water of the shower to soothe my wrist, arms, shoulders and neck. I concluded with massaging the impacted areas until I had some relief.

It’s crucial when driving to known your limits. You should also be sure to have plenty of self-care and treatment options for once you arrive at your destination.

When I travel by air, I always request wheelchair service at the ticket counter. This saves my spinal column, knees and feet from having to stand in long lines at the ticket counter, security, and the boarding gate. I always sit in the front of the plane, close to the bathroom, also due to pain. As soon as I deplane, there is a wheelchair and attendant awaiting my arrival to be wheeled through oftentimes very huge airports in between gates or just to get to baggage claim. He or she earns my biggest tips! And I often use the baggage carts once my luggage is retrieved. Some airport terminals and gates are as far as the east is from the west. So whenever possible, I research in advance if they have the motorized transport vehicles and where to request them.

Even when you plan ahead, things can still go wrong.

Earlier this month, aboard the Harmony of the Seas cruise ship, where I was a guest speaker conducting training to 40 travel professionals, my ankles had swollen due to a new medication being introduced to my system right before I traveled.

(Note to self – “Self, wait until after you return from travel to try new medications!”)

This medication was supposed to help with the aforementioned electrical shooting pains. But then I felt like my second passion as a voice-over actress kicked in and I starred in my own medication commercial where I read aloud very fast that “this medication will help patients alleviate the zapping of misfiring nerves, but it could cause lower body extremity edema such as the swelling of your ankles the size of softball appendages, turn your calves into logs, and prevent you from wearing shoes. So much for sexy summer logs, I mean legs!!!” And cut…

(I write with a lot of humor otherwise the gravity of the amount of pain I deal with daily would be more overwhelming than most people could deal with.)

Suffice it to say, it was not the business trip I had envisioned. I had no water pills with me to remedy the edema. I had planned to stand and walk around the training room, but I was kind to my body and chose to sit and teach. I made it work.

Meanwhile, walking aboard the ship was actually quite painful because of its size. It significantly hindered my ability to be a travel agency owner scouting out activities and excursions for my clients to experience in the cruise port destinations we visited. I could only wear two pairs of the shoes out of the several pairs I brought with me.

Every trip I take, I feel like I learn new lessons about how to prepare.  I learned three crucial things on this business trip: 1) never start new medications before I travel, 2) always bring comfortable shoes, and 3) always have water pills on hand in case of swelling.

I truly wish I could travel as much as my free-spirited soul would love to travel, but my body limits me. That said, it does not force me to stay at home and if I can only travel a couple of times a year, I will take that over never traveling again. I have one small suitcase for my pain needs and as long as my pain remedies are portable, I am always ready for an adventure…pain and all!

Anne Smith is a pain warrior, a term she learned during her training with U.S. Pain’s support group program, Pain Connection. From Pain Connection, she also learned perseverance and determination in overcoming the multiple pain conditions that she has. After a few years of restructuring her life to cope with pain, she found the strength to restart her travel and events planning business, Travel & Events Extraordinaire. Since then, with the help of family, friends, and organizations like the U.S. Pain Foundation, she has adapted her business to embrace her pain conditions, but also equipped herself to learn about accessible and medical travel to better assist her client’s unique travel needs.

Clinical research shows cannabis relieves pain…so why is access so limited?

By Jahan Marcu, Ph.D., Chief Science Officer for Americans for Safe Access

With over 100,000 active members in all 50 states, Americans for Safe Access (ASA) is the largest national member-based organization of patients, medical professionals, scientists, and concerned citizens promoting safe and legal access to cannabis for therapeutic use and research.

ASA works to overcome political and legal barriers by creating policies that improve access to medical cannabis. One method is to share the facts when it comes to research.

Clinical research analysis on cannabis and pain studies

Chronic pain conditions are the most prevalent form of disease in many countries. With few alternatives and a lack of safe and effective treatments for disabling pain, millions will continue struggling to function in their daily lives. Given the public health issues surrounding long-term use of opioid medications, researchers have been analyzing the clinical trials that have investigated the effects of cannabis across more than 15 years of study.

Since 2001, at least nine other clinical reviews have been published by various groups on randomized controlled trials (RCTs) involving cannabis and pain. In recent years, several new clinical papers have been published, which have investigated the ability of cannabis and cannabinoids to treat pain caused by a variety of conditions.

The clinical trials administered cannabis in different forms (smoked, extracts, oral THC, synthetic analogues). Three recent reviews of the clinical trials on cannabinoids and pain demonstrate that researchers agree with the published data: cannabis and its preparations are effective for treating certain types of chronic pain with acceptable side effects.

After review of 43 RCTs (a total of 2,437 patients) involving various types of cannabis-based medicines (CBMs) and various pain conditions, researchers from Israel concluded that:

“In comparison to other indications, CBMs have most extensively been investigated on NP (neuropathic pain) and evidence suggests a moderate to good treatment effect. Furthermore, NP patients should be advised that the inhalation of cannabinoids showed relatively better pain reduction effects than other routes of administration.” (Aviram & Samuelly-Leichtag, 2017)

A study published this year also examined the role of cannabis in helping to alleviate pain:

“Collectively, this research indicates that although the results of experimental studies with healthy adults are mixed, there is converging evidence to support the notion that cannabis can produce acute pain-inhibitory effects among individuals with chronic pain.” (Hill, Palastro, Johnson, & Ditre, 2017)

Another pain research group published a similar review, years earlier, that stated:

“This systematic review of 18 recent good quality randomized trials demonstrates that cannabinoids are a modestly effective and safe treatment option for chronic non-cancer (predominantly neuropathic) pain. Given the prevalence of chronic pain, its impact on function and the paucity of effective therapeutic interventions, additional treatment options are urgently needed.” (Lynch & Campbell, 2011)

These observations, from three different groups of researchers, agree with determinations made by authors of the recent National Academies report on cannabis that there is ‘‘conclusive or substantial evidence’’ of benefit from cannabis or cannabinoids for chronic pain.

An impressive body of literature supports the use of cannabis in pain conditions, and recently, this has been supplemented by an increasing number of phase I–III clinical trials. Cannabis-based medicines are currently available in various countries for pain treatment, and cannabinoids of botanical origin may be approvable by the FDA. We will continue to track this research. For more information, visit: safeaccessnow.org/reports.

About Jahan Marcu, Ph.D.

Jahan Marcu, Ph.D. is the Chief Science Officer for Americans for Safe Access and Director of Patient Focused Certification. He is also a contributing author and editor of several scientific and regulatory publications, and is a court-qualified cannabis and synthetic cannabinoid expert.

This story was originally published in the INvisible Project: Medical Cannabis edition.

 

Pain Awareness Month: Always aware of my chronic pain

By Kerry L. Wong

When most people think of sarcoidosis, what usually comes to mind is … OK, let’s start by correcting that – most people don’t ever think of sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, usually because someone they know has been diagnosed, they most likely think about breathing problems. That makes sense, since 90% of people with sarcoidosis have it in their lungs. This can lead to severe bouts of pneumonia, pulmonary fibrosis (scarring), and more.

I do have sarcoidosis in my lungs – that’s actually what helped lead to my diagnosis, after nearly 8 years of trying to figure out what was wrong with me. But (knock on wood) my breathing issues are relatively minor.  The most severe symptom I have, the one that dozens of doctors and dozens of treatments have been unable to adequately contain, is chronic pain. Because sarcoidosis can affect nearly any organ in the body and is frequently accompanied by a number of comorbidities and/or complications, sarcoidosis patients often live with pain in a variety of forms, severities, and parts of the body.

For me, that literally means pain from head to toe. I have been living with a few different types of headaches for most of my life: these include tension headaches since high school, migraines since college, within the past decade, sinus headaches from chronic sinusitis, and even more headaches that come as a side effect of medication.  I also have fibromyalgia, which is “characterized by widespread, debilitating pain,” among other symptoms, and have suffered with painful endometriosis since college, and irritable bowel syndrome since long before they even called it IBS.

Since sarcoidosis is an inflammatory disease, the chronic inflammation causes painful arthritis, most often in my ankles, knees, hips, and hands, as well as muscle aches most often in my neck, back, and arms. As sarcoidosis affects my nerves, the neuropathy causes a painful pins and needles feeling in my hands, feet, and lower legs, a sharper pain that shoots down from my hips, and back pain that can be completely incapacitating. Even cutaneous (skin) sarcoidosis causes erythema nodosum, painful bumps that develop on my legs. I am in pain every minute of every day; it just varies in location and severity.

The pain can be debilitating. There are days when I can’t get out of bed for an hour after I wake up, and moments when I am literally stopped in my tracks from a sudden burst of pain while I’m out. But the pain itself isn’t always the worst part. Because pain is invisible, sarcoidosis patients like me are often told that we don’t look sick.

This is actually a double-edged sword, though. While I’m glad I don’t typically go around looking like an extra from The Walking Dead, people often have difficulty believing what they cannot see. Since we look fine, people assume that we are fine – and often do not fully understand or believe how much we are truly suffering. This can lead to all sorts of problems – with friends, when we have to cancel plans; with family, when we have to miss special occasions; with employers, when we have to call in sick so often; with Social Security, when we have to apply for Disability Insurance; even with (some) doctors, when we try to get some much-needed relief.

That’s why Pain Awareness Month is so important. First and foremost, it is an opportunity for chronic pain patients to share our experiences, to help educate not only those closest to us, but anyone who is willing to listen (or read). The more we share each other’s stories and raise awareness, the better we can support the next person who is suffering from chronic pain and its societal consequences.

Speaking of the next person … that’s the other great thing about Pain Awareness Month – sharing these stories helps to connect us with the next person who is suffering. Living with chronic pain that affects every aspect of our lives can be incredibly isolating.  It’s easy to feel like we’re all alone, that no one else understands what we’re going through. But when we raise awareness, each of us gets to see that we are not alone.  In fact, a recent study from the National Institutes of Health reports that 11% of Americans (that’s around 25 million people) suffer from chronic pain.

Through blogs, social media, patient-centered organizations and support groups (both in person and online), we find people we can turn to with questions, ideas, joys, and sorrows. We are no longer alone, or just one of 25 million suffering in silence.

We are in this together; we are the chronic pain community.

About Kerry Wong

Kerry Wong is an active U.S. Pain ambassador who shares her experience in order to support fellow patients, guide newer advocates, and help educate those around us. She suffers with chronic pain due to a number of conditions, but does her best to remain positive and empowered. Though managing her health has become Kerry’s full time job, she continues to write for her blog, Float Like a Buttahfly, to organize fundraising and support events, and to lead advocacy activities at the federal, state, and local level.

Self-care is not selfish

Originally appeared on HealthCentral.com, by Marianna Paulson

Self-care is an important strategy for everyone. If you live with a chronic illness, please don’t negate or neglect this vital part of your treatment plan.

Self-care can help propel you to better emotional, mental, and physical health. At the very least, it can help you maintain the quality of health you currently have. That’s not a bad thing. Far too often, the road of chronic illness is riddled with potholes, which can cause serious breakdowns.

What Is Self-Care, and Why Practice It?

Here is the World Health Organization’s 1998 definition: “Self-Care is what people do for themselves to establish and maintain health, and to prevent and deal with illness. It is a broad concept encompassing hygiene (general and personal), nutrition (type and quality of food eaten), lifestyle (sporting activities, leisure, etc.), environmental factors (living conditions, social habits, etc.), socio-economic factors (income level, cultural beliefs, etc.), and self-medication.”

Do you feel selfish when you practice self-care? I could tell you to stop it, but that’s not enough, especially if you’ve held this as a lifelong belief. Rather than slapping a negative adjective such as “selfish” on self-care, leave off the judging word. Just make it something you do. Period.

Thoughts that you think over and over again become beliefs. Make self-care a new belief.

Finding Strength Through RA

Self-care is one of the least selfish things you can do, especially when you take the long view. When you practice self-care, you not only function better, but you also feel better. This ripples outward, anointing the people and things in your life with your given best.

If self-care seems like a foreign word to you, create your own definition. Instead, substitute the word “generous” for self-care. During the 17th century, generosity was identified as a nobility of spirit, which was thought to be associated with people from noble lines, who were presumed to possess traits such as courage, fairness, gallantry, gentleness, and strength. If you live with a chronic condition, you probably possess many of those traits already.

Currently, the Science of Generosity defines it as the virtue of giving good things to others freely and abundantly. Be generous with yourself.

I hope to convince you to regularly implement self-care techniques by releasing negative feelings, such as guilt and selfishness. Immersing yourself in those negative feelings also contributes to stress—something you don’t need, considering its connection to the inflammatory response.

Elements of a Self-Care Practice

Think T.O.T.O.M. I could say, “Da plane, da plane,” if you’re old enough to remember the TV show “Fantasy Island.” If not, think T.O.T.O.M.—Theory of the Oxygen Mask. There’s a reason the flight attendant tells you that, in case of emergency, you should put on your own oxygen mask before you deal with the masks of those under your care. When you practice self-care, you not only model good behavior for your children, but you also cultivate your own well-being so that you can effectively look after the people and things in your life.

2-4-6-8! Who (what) do we appreciate? This exercise, done over time, can change your half-empty glass to one that is filled with effervescent bubbles of optimism. A 2015 University of Illinois study found a connection between a more positive outlook on life and better cardiovascular health.

Be selective about who you tell. When you make a behavior change, keep it close to your heart. Only tell those you can trust. It’s hard enough to make the change without the voice of the naysayer.

Your life depends upon it. I recently heard a woman complain, “I wish I could get paid to exercise.” Her partner worked in emergency services, and because of the dangerous nature of his work, his job description included regular fitness sessions, so in essence, he does get paid to exercise. But even if we don’t, our well-being still depends on us being as healthy as possible.

Know your “window.” When you live with a chronic illness, you have a threshold of “too much.” It might mean too much work, too much activity, too much stress. Cross the threshold and you feel exhausted, have a flare-up—emotionally or physically—or get sick.

Never mind “Fill the bus!”  Instead, fill your toolbox with a number of different self-care strategies. Your brain may get bored with the same old ones. It’s good to experience something new, even though you may have your favorites. Keep in mind that your self-care may be different from mine.

Learn the value of yes and no. This is pretty much self-explanatory, but you might try this little experiment: Say “yes” to the things you usually say “no” to, and vice versa.

Schedule it. If you’re new to self-care, put it on your calendar. I find that regardless of what task I want to do, if I write it down the night before, I usually accomplish it the next day.

Can you overdo self-care? Maybe. If your quest for self-care becomes an obsession, where the quest is more important than the actual practice, you might be overdoing it. Ralph Waldo Emerson reminds us to have moderation in all things. Or as my mom once said to me when I asked why we couldn’t have her special dessert every Sunday: “Because then it wouldn’t be special, would it?”

Don’t wait until International Self-Care Day on July 24, a day selected for its 24/7, or round-the-clock symbolism. The International Self-Care Foundation was formed to promote self-care around the world. See how you’re doing with their “7 Pillars of Self-Care.”

To get started, ditch the perfectionism and self-flagellation. In other words, be as kind to yourself as you are to those you care about. Be generous about self-care!

Reprinted with permission from HealthCentral.com

About Marianna Paulson

Marianna Paulson, aka Auntie Stress, has had rheumatoid arthritis for 40 years, but RA hasn’t had her. It has taken her on a journey of many career and health changes. Along the way, she has learned to adapt to and adopt a better way of living, much of which she shares on her two blogs, AuntieStress.com/Auntie-Stress-Cafe (Healthline’s Best Stress Relief Blogs of 2017), and rheumfuloftips.wordpress.com. When she is not helping clients (and herself) address stress, she keeps active by swimming, dog walking and taking frequent dance breaks when she is working on her computer.

To be their advocate: A personal letter from one parent to another

Psychologist Jenna Krook, MS, offers advice on how to become your child’s best advocate.

Dear fellow parents,

Our journey started seven years ago when our son was diagnosed at 10 years old with reflex sympathetic dystrophy (RSD). This mysterious and debilitating condition was overwhelming—it became the center of our lives.

Being an advocate for a sick child is a difficult role. When you face a condition as misunderstood and overwhelming as RSD, finding the time and resources to discover and advocate for treatment and intervention is a challenge. Learning what will work for your child takes time, and there is no quick answer.

Sources of strength

We have been blessed to share our journey with a family that provides us with support and guidance. Parents to an extraordinary young woman who faced RSD, survived, and ultimately thrived, they shared their experience and knowledge—which makes an enormous difference. What follows here is a summary of our collective experience that we hope will help you.

The diagnosis process

The process of getting an RSD diagnosis, or any diagnosis, requires advocacy. I know it’s disheartening to see a number of doctors who often misunderstand the condition. It takes time—which is a quandary, because a fast diagnosis is critical to recovery.

It is helpful to bring a document to all appointments that lists your child’s symptoms, doctors/specialists, descriptions of injuries, overview of previous treatments, and your questions and concerns. You may need to go to several appointments and see several specialists before you feel like you have found your “team”—the group of specialists who will help your child heal.

Become an investigator

It is essential to investigate and become knowledgeable about your child’s condition. You may find it helpful to access resources like books and articles related to pain conditions; interview specialists/doctors knowledgeable in the area of chronic pain conditions; and join organizations or foundations related to pain disorders.

Reaching out to support groups and getting connected with families that are facing the same challenge is also valuable. You will not only gain the support of others who understand your situation, but you will also gain knowledge regarding treatment options.

Because no single treatment works for everyone, you will need to continue investigating and trying new treatments. Often, the only way to find out about these options is to connect with those who have taken this journey before you.

The importance of education

One area of advocacy we found critical was educating the child in pain, as well as their siblings.

Our goal is to help our children with chronic pain learn to advocate for themselves. They can’t do this without understanding the science behind the condition. Consider providing the information in a written form along with visuals (like photos and diagrams) so your child can always return to the information when questions arise.

When we educate children, we empower them. Knowledge gives them the strength to advocate and educate others. Even more important, when children understand what is happening in their body, they can begin to understand how each treatment creates change in the body. This knowledge assists in the healing process.

Shifting the focus away from mental health

Most of us have been to doctors who look for mental health-related explanations for pain. You may find yourself educating doctors and advocating for treatments that address the pain condition rather than focus on mental health.

There is a need to provide emotional support for a child facing a chronic illness, but beware the doctor who believes that a mental health condition is the cause of the pain. Be vigilant in directing care in a manner that provides emotional support/therapeutic intervention for a child who is suffering from a pain condition, versus directing care at a mental health condition as a reason for the pain.

Seek specialists

Keeping an open mind about treatment options is essential. Investigating alternative/naturopathic methods of treatment can be useful in developing your “team” of specialists. Be willing to advocate for these less-conventional, often less-understood treatment modalities, because they may help provide pain relief for your child.

Advocate at school

You will also have to advocate in a complicated school system. Sharing your knowledge with school staff is a fundamental step toward securing services/accommodations.

Request a meeting with school staff and support personnel. In this meeting, provide a document that educates them on the unique medical needs of your child. Offer a signed release of information so school staff can access the expertise of your specialists.

The school staff may consider developing a 504 plan, a legal document that can ensure accommodations like modified homework, extended time on assignments/tests, schedule changes, timing of classes, access to tutoring, study halls, counseling, restricted physical education, and more.

Make time for fun

Be an advocate for laughter and play. This staggering, potentially disabling condition has the ability to strip our children and our families of joy. As we search our souls to find gratitude and hope for a better tomorrow, we must keep a sense of humor, laughter, and play in the lives of our children.

On days that feel hopeless, we must find ways to be together and infuse play into our day. Including your child’s friends in these activities—finding ways to keep our children included in their circle of friends—maintains joy. Finding the strength to create joy can be one of our greatest works of advocacy.

About Jenna Krook, MS

Jenna Krook holds a Master of Science in Counseling and a School Psychology Credential. Jenna has 23 years of experience as a psychologist, both as a school psychologist and in private practice. Her efforts are focused on helping children learn social skills, increase self-esteem, manage anger, and achieve healthy emotional development—even in the face of challenges. She works hard every day to never take for granted her health and well-being as well as that of her children. Jenna lives in Walnut Creek, California with her husband, 17-year-old-son, and 13-year-old daughter.

I can see a little more clearly now

By Edward Bilsky, PhD

Having experienced little pain, myself, it is impossible to fully comprehend what it is like to live with severe chronic pain. My work as a research scientist studying the basic biology of pain and opioids for almost three decades has not shed much light on the challenges faced by people in pain.

I have read plenty of clinical papers and spoken with countless physicians and other health care practitioners about this topic, but to be honest these efforts barely scratch the surface. It has taken self-realization, reflection, and a willingness to come out of my own comfort zone to peel back a layered and nuanced veil and peek inside.

Beginning to see pain

It was a little over three years ago that I received the first of many emails and calls from people affected by chronic pain. The award of our new pain grant was well-publicized, resulting in a number of inquiries from people desperate for pain relief. They wanted to enroll in our clinical trial of a new pain medication that did not yet exist (our work was focused at the pre-clinical level).

I had a choice. The simple option was to ignore the queries or politely respond that we were not conducting clinical trials. But, realizing that in almost 30 years of education and research, I had yet to have a meaningful conversation with a person in chronic pain, I made a commitment to respond to each person who reached out to me, asking them if I could meet in person and learn about their pain and its impact on their lives.

What could I offer to help?

The anticipation of meeting these individuals in person was nerve-racking. What would they be like? What would they ask for? How would the conversation go? What could I actually offer in terms of help?

The answers came quick enough. Some walked through the door with canes, walkers, and limps, while others were the epitome of “invisible” pain, with powerful strides, firm handshakes, and no apparent distress on the outside. Each had a unique story, but they also shared many commonalities in their narratives. And with each new introduction and listening session, I became more convinced that meeting them all was one of the best decisions I had ever made.

 “The INvisible Project provides another example of how working with people who face adversity to tell their stories helps to better educate future health care professionals.” – Edward Bilsky, PhD
A profound impact

These initial encounters have had a profound impact on my life, and on many others at the University of New England. We have formed deep and meaningful partnerships with the Chronic Pain Support Group of Southern Maine and the U.S. Pain Foundation. I have learned about the INvisible Project and the important work it is doing by bringing the faces and voices of pain into discussions with policy makers, health care providers, and scientists.

Through advocacy efforts, people in our communities who experience significant chronic pain are candidly sharing their experiences with our students—the next generation of health care providers and researchers. We are collecting stories and creating video narratives of complex pain states, examining each case from numerous angles to get a more complete picture.

This work is being disseminated well past our own communities in an effort to de-stigmatize and de-mystify chronic pain. A group of us are also working with  pain warriors (policy advocates who themselves have chronic pain) to be more effective advocates for improving prevention and management options for chronic pain. We are using photography, videography, narrative medicine, art, music, and other techniques and disciplines to complement our efforts in the laboratory and clinic.

Professional meets personal

The greatest irony in all this effort is that the impact of chronic pain was staring me in the face for the past 40 years. My mother fractured her hip when I was a young boy and had several complications that led to decades of severe chronic pain. The stoicism she displayed, in part due to the stigma of chronic pain and the callousness of our society, led to a tangled downward spiral of isolation, anxiety, depression, and silent suffering.

As a child, I was not sensitive enough to pick up on the signs; I sometimes ignored them as life got busier and more complex. I learned much more about my mother’s story when she and my father (who now also has chronic pain) spoke to 175 first-year medical students. Their first-hand accounts of the effect of pain on themselves and their family were revealing.

They’ve experienced moments when the health care system failed them, and moments when a single individual acted to make their situation better. Their stories and countless others drive my newfound passion to make the invisible visible.

About Edward Bilsky, PhD

Dr. Edward Bilsky is Vice President for Research and Scholarship at the University of New England. He received a PhD in Pharmacology and Toxicology from the University of Arizona Colleges of Medicine and Pharmacy in 1996. Dr. Bilsky’s laboratory conducts translational research in the areas of pain and addiction. He has received more than $6 million in extramural funding to his laboratory and has published more than 75 peer-reviewed publications in leading journals, presenting nationally and internationally in a variety of different venues. He was awarded the 2011 American Osteopathic Association Research Mentor of the Year Award, is a recipient of the Faculty for Undergraduate Neuroscience Lifetime Achievement Award, and the 2014 Patient Advocacy Award from the American Academy of Pain Medicine. 

 

 

Words Matter: A patient weighs in on the importance of clear language when discussing RA/RD

By Kelly O’Neill Young

When I was diagnosed with rheumatoid arthritis (RA), I had no idea what it meant. Not only was I unaware of what symptoms to expect, I did not know exactly what the disease was. My grandfather had lived with the disease, and died with it. But the only things I remembered were his bent fingers and watching him push with the back of his hands to stand up. Why did he do that and what was wrong with his hands?

I asked more questions when Granddad died suddenly from a heart attack (first event myocardial infarction). People don’t just die in their sleep out of the blue—at least they hadn’t in my 19 years. Family members answered my questions with clichés about death that left me quiet but still curious.

In Pain, and Unsuspecting of More

As mysterious joint symptoms pestered me occasionally over the next two decades, I asked my doctors a few times whether I might have RA. Each one insisted it was impossible. How did they know? I had no idea how they judged.

It haunted me that my frozen shoulders, dislocated hips, painful feet, and neck degeneration might be that mysterious disease of Granddad’s that I knew nothing about.

Eventually, I experienced onset of full-blown RA, with multiple joints swelling intermittently. I lost strength and range of motion overnight. It only took a couple more doctors before one finally ran a blood test that indicated RA.

This new pain in my joints was comparable to the pain of childbirth without medication, which I had experienced five times. Now, I thought about Granddad a lot. Why hadn’t I asked him more questions? How could I know absolutely nothing about this disease?

Unexpected Bonuses With RA

Unfortunately, my joint pain and stiffness were not my only symptoms. There were bright red rashes that covered my arms, daily fevers of 101 degrees, black circles on my toes, and severe reddening of my face several times a day.

Because the harsh joint symptoms interfered with doing most normal activities like washing my hair or dressing my baby, they eclipsed my systemic symptoms at first. So, I took many surprising symptoms in stride. Even my kind rheumatologist essentially shrugged at my systemic symptoms, at one point saying, “But those aren’t joints.”

In addition to weird skin symptoms and daily fevers that continued for years:

  • No one warned me my eyes might dry out. When I got to the point of wearing sunglasses at night in my living room, I went to the ophthalmologist who said the surface of my eyes “was rough like asphalt.” Sjögren’s syndrome, he said, from your RA.
  • No one warned me I could lose my voice entirely. By the time I went to a throat doctor, I knew. Cricoarytenoid arthritis, inflammation, and spasms, from the RA.
  • No one told me RA could inflame my blood vessels, but it did. It caused painful blood blisters from just folding clothes or taking a step. I was also diagnosed with livedo reticularis, a permanent condition on my skin caused by rheumatoid vasculitis, courtesy of RA.
  • No one believed RA would affect my heart, least of all me. But the erratic blood pressure and atrial fibrillation I experience are some of the many heart symptoms investigated by rheumatology experts at Mayo Clinic.
  • No one seemed to know inflammation from RA could cause platelet levels to rise to over 700,000. But mine do, along with frequent bleeding under the skin and numerous abnormal blood lab results.
  • Could RA lead to autoimmune hepatitis? It seems to have done so in my case and that of other patients I know.
  • No one ever suggested vitiligo was a possibility either, but here we are, with skin on my arms that doesn’t make pigment any longer.
  • No one warned me about shortness of breath. But whatever I can feel going on in my heart, lungs, or blood vessels has caused this frequent symptom as well.

Rheumatoid Symptoms or Coincidental Comorbidities?

“But Kelly, you are an unusual case,” I’ve heard. Am I? Being part of a patient community for several years has convinced me that I am not unusual. It is not unusual to have close relatives who died from RA-related causes. And extra-articular disease (meaning disease not located in a joint) is not uncommon.

It becomes hard to imagine these are coincidences.

While I learned firsthand the harsh pain and limitations RA’s effects impose on a person’s joints, the following also contributed to my understanding:

  • Hundreds of thousands of interactions with other people with RA
  • Hundreds of academic articles from medical journals and historical publications
  • Large surveys and polls of our patient community

I also had two advantages as this data informed my understanding of this disease: A sincere curiosity to know the truth, and an abiding trust in the stories patients tell.

Research and Listening Persuaded Me that RA is RD

One common thread connected all these data points and my experience. It was that RA is not a type of arthritis. Arthritis is only one symptom of what we call “rheumatoid disease.”

When I started interacting with other people with rheumatoid disease (RD) in 2008, I heard the same refrains often heard today: “No one understands. People think this is the same as osteoarthritis, but it’s so much more.” I avoided discussions and arguments about the name of the disease. I wasn’t afraid to confront the error of the disease name; I was worried about wasting time debating the name when there was so much work to be done to provide information and encouragement to people fighting the disease.

Meanwhile, I read many academic articles that refer to RA as rheumatoid disease, especially non-American publications, older articles, and those published in non-rheumatological journals. If you think about it, it might sound silly in a thoracic or cardiac journal investigating ways RD affects the lungs to use the word “arthritis” because there are no joints in the lungs or heart.

The bigger picture came into focus.

The picture I saw was undeniable. People I heard from were living with the complex disease that is documented in medical literature. Arthritis is a painful and significant symptom of that disease. However, arthritis is not necessarily the first nor most life-impacting symptom. Neither is joint inflammation (arthritis) the reason for the persistent mortality gap in RD.

Most of the problems faced by people with RD are closely related to the misnomer of RD as “a type of arthritis:”

  • Medical problems that contribute to the mortality gap are not appropriately treated in RD because of the false impression that the disease only affects joints, and only certain joints.
  • Problems with lack of empathy or obtaining accommodations in both personal relationships and employment have a common cause: the lack of awareness of the nature of the disease.
  • Better treatments and a cure have been stalled by confusion about how the disease affects the body. For example, many researchers are unaware of specific ways in which RD inflammation affects certain organs and systems.

The Experiences of Patients Pointed to a Simple Solution

Rheumatoid disease is actually a historical term. So I often say, “I did not invent the ball; I just picked it up and ran with it.”

I wrote my book, Rheumatoid Arthritis Unmasked, to help patients and medical professionals know the medical dangers of rheumatoid disease that need to be addressed in people living with RD.

The term “RD” has been readily adopted by many patients and is used interchangeably on some health websites because they know patients appreciate it. It has been a natural change for the patient community because most of us know someone who died from an RD-related cause.

Correcting the label of RA to RD is the most simple and productive action that could be taken to help people living with the disease. It is time to update the label and acknowledge that research confirms what our experiences with the disease have already taught us: that arthritis is only one symptom of a complex disease.

About Kelly O’Neill Young

Kelly is the creator of the award-winning website RAwarrior.com, which she launched in 2009. Her non-profit organization, the Rheumatoid Patient Foundation, works to improve the lives of people living with RA/RD through research, education, and advocacy. She also works as a consultant and patient advocate with various organizations and agencies including the Food and Drug Administration (FDA), the Patient-Centered Outcomes Research Institute (PCORI), and the Department of Health and Human Services. 

 

Complementary and Alternative Medicines for Migraine

By Katie Golden

In Dr. Robert Cowan’s paper “CAM in the Real World: You May Practice Evidence-Based Medicine, But Your Patients Don’t,” he explores the notion that patients with migraine disease often incorporate complementary and alternative medicine (CAM) into their treatment regime, although it is a topic often left out of the discussion between physician and patient.

Some examples of CAM are yoga, meditation, acupuncture, massage therapy, homeopathy, biofeedback, and natural supplements.

Dr. Cowan believes most physicians lean on evidence-based medications that have been proven in FDA-approved clinical trials, while dismissing alternative methods that are harder to study under standard scientific procedures. He reports that less than 20 percent of headache specialists surveyed incorporate any type of CAM into treatment plans.

On the flip side, over 80 percent of patients report they use some form of CAM, and only half tell their doctor about it because they are afraid of being judged.

My CAM Journey

I strive to manage my migraine disease through a mix of medication and complementary and alternative medicines. I’m very open with my headache specialist about what I want to try, and she’s always been supportive.

Throughout my journey, I’ve tried massage therapy, dry needling, natural supplements, biofeedback, chiropractic, meditation, and more. Yoga is the one self-healing measure I have found the most comfort in. It gives me the greatest relief, energizes my soul, and challenges me the most.

Taking the Yoga Practice with You

At the end of my favorite yoga class on Sunday nights, my yogi says, “Take the support from this group into the rest of your evening and take this practice with you throughout your week.” Yoga doesn’t just live on the mat in a class; it can guide you through your day. It’s taken years of diligent practice to find what “taking your practice with you” means to me.

I practiced Bikram yoga, or hot yoga, for years. It helped me during a difficult time in my life. When my migraine disease became chronic, any form of yoga seemed impossible. Actually walking down the street seemed impossible.

Looking back, it made perfect sense to get out of bed and get on my mat. My muscles were always in a constant state of fatigue, which only contributed to my pain. I needed to open up my body and my heart center. Yet all I could focus on was working and sleeping. I was in survival mode.

When my doctor suggested I go on short-term disability, I decided to make exercise a priority. I felt weak. I had no control over my body. It was something my athletic boyfriend had been urging me to do as well. I enlisted the help of a trainer, who had no knowledge of my condition, but who researched workouts and modifications that would help me succeed and not incite a migraine.

Baby Steps Are Worth It

Some days, I felt I was making progress … baby steps towards endurance. Then I would have a setback, losing weeks of work to being confined to bed. When I returned to the gym, I felt like I was starting all over again. Frustration does not even begin to explain the defeat I felt.

After a year of weekly training sessions, I felt brave enough to step onto my mat in a classroom. I told the yogi about my health issues and limitations; I wasn’t sure I could endure an hour-long class. She told me she would give me modifications, but the most important thing was just to stay in the room for the entirety of the class, which I did!

I had put so much pressure on myself to be able to gracefully transition between poses or hold my gaze steady while balancing on one foot. But that wasn’t where I was yet, and I had to learn to give myself some slack. No one was looking at me, no one was judging me … except myself.

Each class was a crapshoot, never knowing if stretching out my body would be healing or hurtful. With each session, I learned something new about the practice and about my body. Eventually, I felt more in tune with what my body was trying to tell me—I had just never stopped to listen before. I could no longer ignore the signals that screamed for me to eat more regularly, drink more water, or stretch out my body.

Taking Yoga Off the Mat and Into Your Life

Over time, I learned that returning to the fundamentals of yoga could help me daily.

In yoga, your breath is connected to every move you make. For example, breathe in while you bring your arms up, touching the palms above your head. Breathe out while releasing the arms and moving them down to the sides of your body. This connection of breath and movement takes practice, but I found it helped me in my daily life. When giving myself a shot of Toradol, I breathe in and insert the needle and breathe out when I inject the medicine.

It might sound silly, but focusing on the breath can help me to ignore the pain of receiving the injection. That is just one way that I take my yoga practice off my mat and into my week.

When I notice that my balance is off, I’ll work on certain poses that challenge my balance, such as tree pose. To just gain a quick boost of energy, I will do an easy sun salutation. I have no shame in doing yoga wherever I am and whenever I need it. The airport is definitely a place where my weary body yells at me to pay attention to it. These are other ways in which I integrate yoga into my daily life.

Consistency Brings Results

A 2014 study assigned migraine participants to either a conventional care group, or a yoga group that practiced five days a weeks for six weeks, along with their conventional care.

At the end of the study, the yoga group reported greater improvement in the intensity and frequency of their migraine attacks compared to the conventional care group.

Movement, even in the most basic form, can become difficult for those with chronic pain. I encourage everyone to explore yoga. That could mean learning simple stretching techniques, finding a way to connect your breath with movement, or letting go of your inhibitions and attending a class.

Don’t have money for a class? No problem. There are many free classes available online. I personally use “Yoga with Adriene” on YouTube. From the fundamentals to upper level poses, her style is easy to follow.

Yoga may not be a cure, but the fundamentals could help you feel more in control of your body.

Other CAM options:

  • Massage Therapy: Massage therapy can include multiple techniques like Swedish, deep tissue, Shiatsu, Thai, myofascial trigger point, and hot or cold stone. One study showed that those who received 12 myofascial trigger point massages during a six-week period, instead of ultrasound, reported the highest positive change in headache frequency, perceived headache pain, and greater improvement in their pressure-pain threshold.
  • Acupuncture: Acupuncture is likely the oldest form of CAM. Thin needles are placed strategically along one or more of the five meridian lines believed to be necessary in balancing a person’s energy or chi. Needles are inserted into the top layer of skin to increase blood flow and stimulate nerves, muscles and tissues. A 2015 study found that a group of patients who received 16 sessions of acupuncture within a 20-week period reported a positive change in the frequency and intensity of their migraine attacks, as well as an increased pain threshold. At a three-month follow-up, the results were the same, but at 12 months post-treatment, the effects had worn off.
  • Natural Supplements: The following list of over-the-counter supplements or vitamins have been used to treat migraine, either in conjunction with preventative medications or alone. Due to the potential for side effects, your doctor should always be included in decisions to use any of these supplements:
    • Butterbur
    • Vitamins B2, B6, C, D, and E
    • Magnesium
    • Potassium
    • Fish Oil
    • Coenzyme Q10
    • Petadolex
    • Peppermint oil
    • Flax seed
    • Feverfew

Please note: The U.S. Pain Foundation and the INvisible Project do not recommend any specific modalities to treat cluster headache or any other chronic pain condition. Your doctor should be informed of any decisions that vary from your treatment plan.  

 

Medical Cannabis in a Balkanized Legal Landscape

By Jerry S. Goldman and Ethan W. Middlebrooks

As a result of the conflicting laws and policies of the federal government and the various states, users of medical cannabis are faced with a host of practical challenges.

The Federal Controlled Substances Act places cannabis (including CBD, a constituent chemical) in Schedule I, the most tightly restricted category, with substantial criminal penalties for its sale and distribution and adverse implications for banking, taxation, intellectual property, and litigation.  State law is subject to the primacy of federal law. For most of the 20th century, states mirrored the federal policy. Over the past two decades, however, a large majority of states have permitted the regulated distribution and possession of cannabis for medical and/or adult-use purposes. Some states permit such uses only for CBD; 21 other states (along with D.C., Guam and Puerto Rico) have comprehensive medical cannabis programs; and 8 states have authorized adult-use cannabis programs.

There are currently limited exceptions to the federal ban that help states maintain cannabis programs. Through the Cole Memoranda, a series of Department of Justice guidances, the federal government, in an exercise of its discretion, has advised that it will not prosecute cannabis offenses under the CSA if (i) the offense relates to medical cannabis; (ii) it takes place in a state which has a robust medical cannabis regulatory regime in accord with certain DOJ requirements; and (iii) the alleged offender operates in accordance with state law. If a distributor violates state law, e.g., by shipping cannabis out of state, it loses this protection.

Further, Congress has enacted a series of amendments to the federal budget authorization acts for fiscal years 2015, 2016, and 2017 that prohibit the use of congressionally allocated funds by the DOJ to prosecute alleged violators of the CSA, if they acted in compliance with the laws of certain enumerated states.

The Impact on the Medical Cannabis Patients

These administrative and Congressional actions have minimized the possibility of federal prosecution of operators of medical cannabis programs who comply with the varying regulatory requirements. Risks nonetheless remain to state programs and persons who use medical cannabis.  The Cole Memoranda are subject to being rescinded, and each budget act has an end date with no guarantee that a similar amendment will be enacted. The real remedy is a structural amendment to the CSA—an action Congress has not yet been able to achieve.

The federal government’s nominal “hands off” approach leaves states free to develop a patchwork of laws regarding cannabis. Each state’s program is limited to its own borders and differs—often radically—from other states. And cannabis cannot be transported across state lines.

Each state has different conditions for lawfully obtaining a prescription for cannabis. The legal means of ingestion may also differ. In New Jersey, one may only ingest cannabis by smoking ‘flower’; in New York, that means of consumption is prohibited—as are edibles in both states, in contrast to Colorado. States differ significantly in the amount of excise or sales taxes charged, who can ‘write’ prescriptions, whether THC-based cannabis (as opposed to CBD) is available, and the frequency and quantities that one may purchase at a dispensary. Some states permit consumers to grow their own cannabis; others do not. There are differing regulations as to where one may consume cannabis (although, generally, one may not consume it while walking around in public, and all states sensibly prohibit the use of cannabis if one is operating a motor vehicle). Laws differ as to who may own a dispensary, how many dispensaries are permitted in a state and where they may be located. These varying requirements create seemingly unnecessary difficulties for both medical cannabis businesses and consumers. However, given that this is a new legal industry, this legislative experimentation hopefully will ultimately lead to the implementation of best practices legislation.

One of the greatest present obstacles to medical cannabis patients is the restriction on interstate activity and access to legal cannabis. Even with the Cole Memoranda and federal budget act amendments, the federal government strictly prohibits any interstate transportation of cannabis.  This prohibits those in the medical cannabis business from shipping the product, which can impair product quality and uniformity, and can result in product shortages, higher prices, and adverse environmental impacts (e.g., in a northern state in the winter, where cannabis must be grown indoors using artificial lighting and supplemental heating).

A patient cannot travel across state lines possessing medical cannabis; the patient will not be able to fill an out-of-state prescription in another state (with the exception of Nevada which has a reciprocity program), and the patient will generally be ineligible to register in order to obtain an in-state prescription. Thus, because of residency requirements, a patient will be deprived of her or his cannabis when travelling. The “work-around” for a patient who cannot easily forgo the treatment is to restrict travel to states which have adult-use programs.

Since California’s initial attempts at reform, the industry and the ability of patients to obtain help has radically changed. We can reasonably expect to see additional changes in the coming years as the industry matures, state governments see what works best, and public (and political) attitudes develop. Ultimately, in order for medical cannabis to work best for those who need it, at least modest federal legislative relief is needed. Until then, patients and cannabis providers should learn how to adapt to these challenges and opportunities.

Disclaimer: The views expressed herein are those of the author and do not necessarily reflect the views or positions of Anderson Kill PC, any of its affiliates or other attorneys, or any of its clients. This article is for general information purposes only, in a changing legal environment. It is not intended to be, nor should it be construed as legal advice to any person or entity for any particular factual content.