No matter what health issue you deal with, your experience is unique. Sharing your reality and your feelings about it can help groups develop more effective treatments and interventions in the future.

CRPS Patient Survey

If you’re a pain warrior with complex regional pain syndrome (CRPS), you know that it’s poorly understood and difficult to treat. As someone who lives with it every day, you’re the expert! Sharing your knowledge and experiences is key to helping develop a more in-depth understanding of the condition.

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U.S. Pain Foundation recently spearheaded a joint letter to the U.S. House Energy and Commerce (E&C) Committee and the E&C Health and Oversight Subcommittees requesting that they convene a hearing about the pain provisions in the SUPPORT for Patients and Communities Act and the recommendations released in May 2019 by the Department of Health and Human Services Pain Management Best Practices Inter-Agency Task Force. The letter was signed by 30 patient and professional groups.

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On Jan. 15, the House Energy and Commerce Subcommittee on Health held a hearing on discrepancies between state and federal medical cannabis policy and federal roadblocks to clinical research. Many felt the conversation was long overdue.

“I honestly never dreamed I would see, in my lifetime, such progress and discussion on the need for more research on cannabis and CBD at the federal level,” says Ellen Lenox Smith, Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation. “But to my excitement, it happened, and it was a thorough discussion, lasting three and a half hours.”

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Ellen and her husband, Stu.

By Ellen Lenox Smith

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

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

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

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Increased stress, anxiety, and trouble sleeping are common for people living with chronic pain. Unfortunately, stress, anxiety, and poor sleep can make pain worse, and vice versa. It’s a vicious cycle.

That’s why we are delighted to share a new tool for managing anxiety, stress, and sleep, and by association, managing pain: Flowly: Relaxation Training. Flowly is an iPhone app that combines biofeedback and virtual reality (VR) using either just your phone or a bluetooth sensor.

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The responsibilities carried out by a caregiver is an invaluable, yet vital role within the lives of chronic pain patients. The informal caregiver often goes unnoticed by communities and policymakers, but Maine is attempting to change that this year.

LD 1919 would provide a refundable income tax credit of up to $2,000 to a taxpayer who personally provides at least 150 hours per year of personal care assistance services for the care and support of an eligible family member or spouse. If you’re a caregiver or pain warrior who supports this legislation, take action today! Your timely response is important, as the Joint Committee on Taxation has scheduled a hearing on Thursday, Feb. 6.

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Last August, U.S. Pain Foundation arranged for three patient representatives and one caregiver to speak about the challenges of osteoarthritis before senior officials at the U.S. Food and Drug Administration (FDA) in Silver Spring, MD.

FDA listening sessions are small, informal discussions about a disease state that can be either FDA-requested or patient-led (in this case, the latter).  The sessions help FDA staff better understand patients’ experiences with a particular disease or condition.

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This week, Centers for Medicare & Medicaid Services (CMS) shared it will cover acupuncture for chronic low back pain.

The news comes following a series of open comment periods offered by CMS on the topic. We alerted our volunteers to the second comment period earlier this summer, and many of you took the time to respond. The second open comment period saw an impressive 644 submitted comments, most of them patients. (You can read U.S. Pain Foundation’s submitted comments here.)

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Ellen and her husband, Stu.

By Ellen Lenox Smith

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

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

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By Ellen Lenox Smith

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

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