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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    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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    We are delighted to launch our 2020 Pain Awareness Month campaign in collaboration with Sunbeam®, this year’s presenting sponsor. (Read the press release here!)

    Our theme for 2020 is #MyPainPlan and will focus on the vital importance of an individualized, multidisciplinary, multimodal approach to pain care—as well as the barriers patients face in accessing this type of care. Below, we detail four important ways to get involved.

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    The Pediatric Pain Warriors program is excited to announce My Marathon, a brand-new fundraising initiative. Knowing that every day can feel like a marathon when you are battling chronic pain, the goal of the fundraiser is to show that while everyone in our community is so different, we all find ways to conquer our obstacles.

    “Because marathons are 26.2 miles, we are asking our pain warriors to do 26 movement activities in September,” says Casey Cashman, director of the Pediatric Pain Warriors program. “Marathons can range from walking 26 steps daily for 26 days to doing 26 minutes of physical therapy for 26 days. The possibilities are endless — you can incorporate yoga, swimming, dancing, martial arts, or whatever you prefer. Each person’s chronic pain journey is different, so each person’s marathon will be unique.”

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    Sue Ann Stelfox, right, with Nicole Hemmenway at the 2019 Advocacy Summit.

    In honor of beloved ambassador and support group leader, Sue Ann Stelfox, who passed away on June 30 after a long battle with cancer, U.S. Pain Foundation is establishing the Sue Ann Stelfox Pain Connection Training Scholarship. The scholarship will cover up to $500 in travel costs associated with attending U.S. Pain’s Pain Connection training weekends for chronic pain support group leaders.

    “Sue Ann was an incredible advocate for people with pain and, quite simply, a wonderful person,” says Nicole Hemmenway, U.S. Pain CEO. “We were heartbroken at the news of her illness and passing. I can think of no better way to honor her passion for helping others than through this scholarship, which gives people with pain the training and tools they need to establish support groups in their area.”

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    MIDDLETOWN, Conn., Aug. 31, 2020 — According to a survey of 1,581 individuals with chronic pain, the majority (94%) face barriers to pain management, whether because of cost, insurance limits, mobility issues, or other reasons. In particular, 72% of respondents were not able to afford multidisciplinary care options, the type of care widely viewed as best practice.

    Released this week in honor of September as Pain Awareness Month, the survey is part of a national campaign to call attention to challenges in accessing pain management. The effort is a collaboration between the U.S. Pain Foundation, a nonprofit organization for the 50 million Americans with chronic pain, and Sunbeam®, a maker of electric appliances, including heat therapy products.

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