A day in the life

By: Erin Adair

In honor of Pain Awareness Month, I want to tell you a little bit about what it is like to be me. I’ll try to be unvarnished, yet not too harsh in the truth of it. In my daily life, I try to be upbeat and as positive a person as I can be but at times life can be overwhelming and it can show through. If some of this seems uncharacteristic of me to those of you who know me well… that may be why and now you can know me a bit better and get, as they say, a peek behind the curtain.

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Although living with chronic pain can feel like a marathon, we all find ways to conquer our obstacles. With that in mind, in honor of Pain Awareness Month, the Pediatric Pain Warrior Program launched My Marathon, a new fundraising initiative in September. Because marathons are 26.2 miles, pediatric pain warriors were asked to complete 26 days of movement during the month of September and asked for pledges for completing their goal.

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By: Matt Parks

The surging popularity of a young cannabidiol (CBD) industry has inspired incredible success stories and with it, incredible misunderstanding among consumers. Whether you struggle from chronic pain, need some relief after a hard workout, or are looking for some stress relief, here are some answers to your CBD questions.

What’s the difference between hemp and marijuana?

Marijuana refers to the hemp plant that was cultivated by farmers in order to increase its medicinal effects from smoking, topical use, and consumption. This process has been performed by humans for thousands of years, but recently has been aided by greater knowledge of genetics, nutrition, indoor growing with artificial light, and an ever-growing list of advancements. Despite this, the general goal has remained the same for marijuana cultivation: enhance medicinal properties by increasing the quantity of cannabinoids (like tetrahydrocannabinol, or THC, and CBD) present in the plant.

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Created by the U.S. Pain Foundation, MyPainPlan.org is an interactive site that allows users to learn about pain management options and create a personalized list of which treatments they’d like to try. The list can then be saved and/or printed for personal use or to share with a health care provider.

“As pain patients ourselves, we know it can be difficult to find credible information about treatment options all in one place,” says Nicole Hemmenway, CEO of U.S. Pain. “We created this site so that patients feel more empowered about the therapies available for relief. We also wanted to draw attention to the fact that the most effective pain care is individualized, multidisciplinary, and combines various treatment options.”

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In honor of Pain Awareness Month, the U.S. Pain Foundation and the Alliance to Advance Comprehensive Integrative Pain Management (AACIPM) are co-hosting a virtual symposium on equity in pain care on Sept. 24 from 11 am to 3:30 pm ET. The event, “Equity in Access to Comprehensive Integrative Pain Management for People with Chronic Pain” will bring together stakeholders working to improve pain care. It is free and open to all to attend; advance registration is required.

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Advocacy round-up

What better way to honor Pain Awareness Month than taking action at the federal level? Here are a few opportunities to engage this month, along with some advocacy updates.

Ways to engage

  • The Center for Medicare and Medicaid Services (CMS) is accepting public comments on whether oxygen should be covered for patients with cluster headache, a rare and debilitating neurological disease. The deadline to comment is Sept. 16. Get tips and help with commenting from the Alliance for Headache Advocacy here.
  • The Alliance for Aging Research is looking for older adults with chronic pain and/or their caregivers to join their #TalkNerdytoMe training series! You’ll receive a $400 stipend and learn how to help advance patient-centered research. Learn more.
  • The Department of Defense is recruiting individuals with chronic pain to participate on panels as “consumer reviewers” of biomedical research.  Interested individuals must be nominated and sponsored by a chronic pain-related advocacy organization and must be able to represent all types of chronic pain, not just the specific condition they live with. Reviewers will receive an honorarium for participating. For more information, contact Melanie Monts de Oca at Melanie.Montsdeoca@gdit.com.
  • The House of Representatives is set to vote this month on the Marijuana Opportunity Reinvestment and Expungement (MORE) Act. Currently, cannabis is categorized as a schedule I drug, meaning it has a high potential for abuse, no medical value and is illegal at the federal level. The MORE Act would deschedule cannabis and decriminalize its use at the federal level, which, from the patient perspective, would be an important step forward in improving access to medical cannabis and enabling more clinical research. Currently, 32 states as well as the District of Columbia offer medical cannabis programs. Help us urge legislators to pass the MORE Act here.
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    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.

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    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?

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    City & State: Sacramento, California

    Age: 56 years young

    Pain warrior role: Ambassador since 2015 and a Pain Connection support group leader

    What type of health conditions do you live with: Chronic low back pain, leg circulation issues, leg ulcers, skin grafts, slight memory issues, edema.

    What is your favorite tip for others with chronic pain:  For people just starting their chronic pain journey, I always say, “pain without humor is just painful.”  What I mean by this is, even with the worst pain possible, if you never laugh, what do you have? A life of pain is difficult, so laugh. Also, you have to care for yourself before you can care for someone else.

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    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.

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