City & state: Saco, ME

Age: 55

Pain warrior role: U.S. Pain advocate since 2014

What type of health conditions you live with: Chronic back pain, narcolepsy, migraines

Favorite tip for others with chronic pain: Each person living with a chronic condition has a hidden talent; find it, and you can build your self-worth back and become part of your community again. Our new families are the people that support us on good days and bad.

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Our second Pediatric Pain Warrior retreat is quickly approaching, and registration is open. The retreat will be held at the ultra-accessible fun park, Morgan’s Wonderland. Morgan’s Wonderland is located in San Antonio, TX, and is specially designed for people of all abilities. The retreat will be held May 24-26.

“Our goal is to bring young people living with pain and their families together, to educate them, and help them connect to other pain warriors and their families,” says Director of Pediatric Pain Warrior Program, Casey Cashman. Cashman continues saying, “Morgan’s Wonderland provides the perfect opportunity to our pain warriors to enjoy their weekend without the barriers they normally face.”

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In mid-March, prospective leaders of chronic pain support groups all over America gathered in San Francisco for a weekend of specialized training. Skilled trainers from U.S. Pain Foundation were there to teach the strategies that will allow attendees to effectively establish and run support groups across the country.

“This was our fifth chronic pain support group leader training,” said Gwenn Herman, LCSW, DCSW, Clinical Director of Pain Connection, a program of U.S. Pain Foundation. “I am always amazed watching the leaders develop confidence, knowledge, and compassion. This San Francisco training group was wonderful and the family members that attended added depth to our discussions.”

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On Jan. 24 and Feb. 11, Tyler Cashman, Director of Pediatric Fundraising, hosted two Points for Pain games, raising more than $5,000 for U.S. Pain’s Pediatric Pain Warriors program. The program provides support for children with chronic pain and their families through weekend retreats, education days, a magazine highlighting pediatric patient stories, a pen pal program, and more.

(The next retreat is May 24-26, click here to learn more!)

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

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

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

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Voices from the Hill

By Jorie Logan-Morris and Jeannette Rotondi

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

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

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Last week, the Consumer Pain Advocacy Task Force (CPATF)–a coalition of pain patient-related nonprofits, including U.S. Pain Foundation–submitted a letter to Department of Health and Human Services (HHS) Secretary Alex Azar regarding the draft report on pain released by the HHS Pain Management Best Practices Inter-Agency Task Force.

The CPATF also plans to submit a longer letter to the federal docket with more specific feedback by April 1.

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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.

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Belleville, Illinois, March 12, 2019 (GLOBE NEWSWIRE)Allsup, the nation’s premier disability representation company, is participating with the U.S. Pain Foundation to present an online seminar called, “Navigating Employment Challenges and When to Apply for Social Security Disability,” on Tuesday, March 19. The webinar provides an overview on assessing chronic pain’s effects and the ability to work, making choices about work and finances, working with medical providers, understanding eligibility for Social Security Disability Insurance (SSDI), and applying for SSDI with chronic pain conditions.

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U.S. Pain Foundation has partnered on a survey with Tamadé, a Virtual Reality (VR) company that has developed a program for chronic pain, to learn more about how pain impacts your life and how VR might help.

The survey takes approximately 20 minutes to complete. Everyone who takes it will be entered to win one of 30 $10 gift cards to Amazon. (Remember to use Amazon Smile, which automatically donates 0.5% to a charity of your choice, if you win!)

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