I remember when the first drug was approved by the FDA in 2007 (Lyrica or pregabalin) specifically for the treatment of fibromyalgia (FM). Everywhere there was a hope that this action could only mean that FM was officially "real". I did not share in the enthusiasm. My husband, David, has fibromyalgia. Having FM was a medical stigma and many health care professionals had the attitude that it was a psychosomatic disease, meaning, all in the patient's head.Would having a designer drug make a difference?
So little known when he was diagnosed in 1976. When we moved to Arizona in 1987, we started the first support group in Scottsdale to help those with this painful disorder find answers and help. More than 1000 people attended our support group over the course of three years and it took an average of 10 years to get a diagnosis.
A lot has changed since the original diagnostic criteria were outlined by the American College of Rheumatology in 1990. Even the tender point exam, manipulation of a number of sites of tenderness specific to FM, has been replaced with a symptom survey. FM has been classified as an "amplified pain syndrome" and yet there's still no one medical group who wants responsibility of care. The rheumatologists say it is not a muscle/joint disease. The neurologists pass the caduceus over to the primary health care practitioners.
Now a decade and two FM approved drugs later, where does that leave the FM patient?
It seems the tarnished reputation of the fibromyalgia patient continues. In a small 2017 survey of English medical students from two different universities, the researchers describe FM as belonging to "a spectrum of medically unexplained symptoms". As such, the diagnosis of FM is usually by multi-testing to exclude other disease processes. The study authors further state that "there is continuing debate regarding its legitimacy". Thus they wondered if FM received any attention in medical curricula or if attitudes had changed. They explored the students' 1) views on FM, 2) encounters with FM patients and 3) where their learning about FM occurs.
Based on their findings, the researchers concluded that "undergraduate medical students have limited understanding of, and are skeptical over the existence of FM" and felt their attitudes were "influenced by 'hidden curriculum' and witnessing attitudes and actions of their clinical teachers". If they were not being taught about FM, the students perceived it was not serious or a low priority.
The authors suggest that "teaching and learning about FM needs to be consistent to improve knowledge and attitudes of clinicians". One way to do this is to have medical students see patients with FM so they will better understand the FM patient.
Source: BMC Med Educ, 9/17, 12;17(1):160.
Margy's Note: We suggest the patient take on the challenge of educating their health care provider with information about FM from their individual experiences. There will probably be some who still do not want to know about or treat FM due to its complicated nature. We applaud all those health care providers and researchers who continue to treat with compassion and strive to find answers for this patient population. Thank you!
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