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Several weeks ago, the House of Representatives passed HR 6, or the “SUPPORT Patients and Communities Act.” Many provisions of HR 6, if they remain in a compromise version of the bill, could be detrimental to pain patients. These provisions include:

  • Discouraging use of opioids post-surgery, even for major procedures
  • State reports on daily MME on covered individuals
  • Increased surveillance in hospitals and ERs on number of opioid prescriptions written
  • Medicare to investigate high-volume prescribers & take “corrective action” against “over-prescribers”
  • Medicare survey of patients may not include questions about how pain was managed unless they also include risks of opioid use
  • Restricting certain individuals in Medicaid to limited providers and pharmacies

U.S. Pain Foundation is concerned these provisions would negatively impact people living with pain, particularly those who rely on opioids to manage their severe daily pain. If you are concerned, we ask you to reach out to your federal representatives and tell them.

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Self-care is not selfish

By Marianna Paulson, HealthCentral Health Guide

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.

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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.

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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.

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Cindy Steinberg, National Director of Policy and Advocacy, was one of the numerous people with pain to speak at the the Food and Drug Administration (FDA)’s “Patient-Focused Drug Development Public Meeting on Chronic Pain” on July 9. The event drew an at-capacity audience in the auditorium, on the phones, and through a web portal. Dr. Sharon Hertz, Director of the FDA’s Division of Anesthesia, explained to the crowd that she and her colleagues were there to better understand the impact of chronic pain, patient perspectives on current treatment regimens, and the challenges or barriers patients face in accessing treatment.

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U.S. Pain was one of several organizations to sponsor 58 children with chronic pain and their families to attend Pediatric Pain Camp at The Center for Courageous Kids, a facility in Scottsville, KY, that offers summer camp programming for kids with serious illnesses. The camp provides activities suitable for children with different abilities and offers an on-site medical center staffed by a full-time doctor.

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Pain Awareness Month is exactly one month away. This year’s theme is #PainWarriorsUnite, and U.S. Pain Foundation has a range of activities, campaigns, and events set up to help unify pain warriors and increase public understanding of the obstacles patients face. Some examples include a daily social media challenge, featuring special giveaways; weekly, free educational events; an op-ed campaign; and the annual Light up the Landmarks initiative.

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While National Migraine and Headache Awareness Month (MHAM) wrapped up in June, U.S. Pain Foundation is continuing to raise awareness through its traveling display of the INvisible Project: Migraine second edition. Below is a photo recap of June and the ongoing efforts to bring about change for people living with headache and migraine disease.

End of May
The INvisible Project: Migraine second edition was released in time for MHAM.

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Maysack celebrating Shades for Migraine

City & State: Madison, WI

Age: 28 years old

Pain warrior role: Advocate and ambassador since 2017

What type of health conditions do you live with: Daily cluster headaches, post-infection chronic mega-migraine disorder, and fibromyalgia

What is your favorite tip for others with chronic pain: “It has become my mission to spread the good word that we are not alone, regardless of how isolated we may feel at times. We’re so much more than any diagnosis or condition, and it’s imperative to navigate ways in which we co-exist with our suffering, all while refusing to surrender to it. I believe compassionate relationship with oneself is not only crucial, but that we’re also worthy and deserving of that as well as the same affection, love and respect that we would give away to anyone else.”

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