‘Treating the person’: People who support those with fibromyalgia talk about dealing with the often misunderstood disease

The pain of fibromyalgia can be debilitating and diminish the quality of life for approximately 4 million people in the U.S., according to the Centers of Disease Control, but it’s still underresearched according to local advocates. For all of our advancements in the field of physical medicine, fibromyalgia has a credibility problem, or a reputation as a false set of symptoms. In a survey taken in 2007 by Health Magazine, over a quarter of 2,000 fibromyalgia sufferers reported that their doctor did not view fibromyalgia as, “a very legitimate condition.”

Bird Treacy is an advocate for those with fibromyalgia. She also endures the illness and finds that it’s a condition that exists “in-between,” affecting the body in erratic ways and difficult to pin down for those who haven’t experienced the pain. When these outsiders are doctors, the dissonance becomes more difficult to face.

“I’ve had doctors treat me like I was fishing for pain medication when I just wanted to talk about what to do during brief pain flares or discuss whether my current treatment was the best approach,” she said.

The rejection from medical professionals takes an emotional toll, especially for those who struggle with chronic pain, according to Treacy.

Investigating the biological basis of the illness can validate those in pain and educate those who are unsure about its credibility.

Rachel Hannah, a certified neuromuscular and biodynamic CranioSacral therapist based in Northampton, spoke about the biological origins of fibromyalgia. “Fibromyalgia stems from inflamed fascia, which is the material that wraps around cells. When the fascia dehydrates and becomes restricted, it creates pain, nerve sensations and limits motion.”

It’s unclear what causes the fascial inflammation, and there’s no permanent cure for the pervasive condition. Still, there are ways to soothe the restricted collagen that forms fascia.

“Fibromyalgia has a strong effect on the nervous system, so I find a combo of modalities in neuromuscular and myofascial release are very effective. Myofascial relief is effective because it’s slow, static pressure breaking up fascia. But each case of fibromyalgia is as unique as people. When people come in, I’m not just treating the condition, I’m treating the person.”

Rachel Hannah is a neuromuscular and cranial-sacral therapist with a practice in Northampton. Here she works with a client on Thursday, Dec. 12, 2019.

Symptom relief can be found in the offices of professionals like Hannah, but she also pointed to some supplemental home remedies, like foam rolling and stretching. It’s better to be careful after a workout to avoid more soreness and injury, as well. The FDA has also approved three drugs to treat fibromyalgia symptoms: Cymbalta, Savella and Lyrica.

Even if the main physical symptoms are being treated, people with this illness need an emotional support system, according to Treacy. As a professional who has been practicing physical medicine since 2002, Hannah offers her thoughts on the importance of fibromyalgia education. “If you explain it scientifically, people will have a better understanding of what it is,” she said.

Fibromyalgia is a mysterious condition, to be sure, and constant pain, fatigue and immobility may seem alien to those in good health. This is when the credibility problem spreads from health professionals to peers and friends, and sufferers of fibromyalgia feel even more alone.

“To those who are skeptical of the condition, please know that it says more about you than it does about us. All that you’re doing by refusing to believe us about our personal experiences of our health and of pain is demonstrating that you’re unwilling to enter into relationships with others in good faith or to accept experiences that are different from your own,” said Treacy.

This unwillingness to accept the word of others can present a real problem for many relationships. According to the American Medical Association Journal of Ethics, the root of this suspicion can be found in the concept of foreignness, or “anything that lay outside the dominant realm of thought.” Dominant thought would include conventional medical thinking, which is subject to change based on new research. But change can be slow.

In the meantime, Treacy suggested finding a community of those facing similar challenges.

“I have certainly found knowing others with fibromyalgia to be helpful, even if just because they understand what it’s like to deal with pain-related insomnia, to feel like your skin is burning at the slightest touch, to be able to differentiate between all the different types of pain. It’s about finding camaraderie within a difficult experience.


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