Welcome to Remedy, a blog by U.S. Pain Foundation. Remedy aims to provide people with the support they need to thrive despite chronic pain. It features the information about promising treatments, tips and strategies for self-management, resources for coping with the emotional and social effects of pain, unique perspectives from patients, clinicians, and caregivers–and much more. To submit an article idea, email firstname.lastname@example.org.
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:
- 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.
- 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.
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 activate. 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.
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.
- Stress-reduction techniques like mindfulness and meditation training
- Vitamin or herbal supplements
- Aloe vera
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.
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 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.
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.
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=
By Brent Wells, DC, a chiropractor and founder of Better Health Chiropractic and Physical Rehab
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.
- 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.
- 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.
- 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.
- 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.
- 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 and Physical Rehab 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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:
- Vitamins B2, B6, C, D, and E
- Fish Oil
- Coenzyme Q10
- Peppermint oil
- Flax seed
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.
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.