Why Is Fibromyalgia So Misunderstood? It's Complicated

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Despite heightened awareness from celebs like Lady Gaga and Lena Dunham, the chronic pain condition fibromyalgia is still widely misunderstood, even by doctors, a new study reported. Published in the journal Arthritis Care & Research, the study suggested that a large number of people diagnosed with fibromyalgia might actually have something else. In fact, some people diagnosed with the condition do not meet diagnostic criteria for fibromyalgia, a chronic pain condition that causes sleep disturbances, tender points, and widespread body pain. Others who do have the illness are told they don't. This is a big barrier to getting appropriate treatment in both cases.

"There are multiple reasons why people might have chronic widespread pain, which essentially fibromyalgia boils down to," Dr. Kevin Hackshaw, a rheumatologist with Ohio State University's Wexner Medical Center who was not involved in either study, tells Bustle. "People all get various labels for chronic widespread pain."

Despite this, he says, fibromyalgia is still likely underdiagnosed. "The prevalence of fibromyalgia is underestimated. That’s one of the biggest issues."

Another study from Tel Aviv University reported that fibromyalgia could be more likely to develop in people who have post traumatic stress disorder as a result of surviving childhood sexual abuse, and can potentially be treated with hyperbaric oxygen therapy. A third study published in the Clinical Journal of Pain noted that women with fibromyalgia are more likely to report a history of sexual assault and are more more likely to have PTSD than women without the condition.

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Lady Gaga spoke in late 2018 about how her own sexual assault contributed to her developing fibromyalgia. "I would see flashes of things I was tormented by, experiences that were filed away in my brain as 'I will deal with you later' for many years because my brain was protecting me as science teaches us," she said in a speech at the SAG-AFTRA Foundation's third annual Patron of the Artists Awards. "This later morphed into physical chronic pain, fibromyalgia, panic attacks, acute trauma responses, and debilitating mental spirals that have included suicidal ideation and masochistic behavior."

Despite millions of people who experience symptoms, some people (including some doctors) don't believe fibromyalgia is real at all. A paper published in the journal Clinical Orthopaedics and Related Research noted, "Some prominent rheumatologists do not believe that the disease exists." Paper author Dr. Joseph Bernstein said the reasons behind why fibromyalgia is so misunderstood are complicated.

"The root cause of the fibromyalgia controversy is that reasonable people can argue that fibromyalgia is more a mind/brain disease than a musculoskeletal disease. But there is more to it than that," he explained. "For one thing, fibromyalgia patients can easily frustrate us. Their complex presentation requires more time than the typical clinic slot affords."

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In short, fibromyalgia patients require more time, effort, and treatment than many doctors are able to provide, but that doesn't mean it's not real or deserving of care. In her ELLE Women in Hollywood speech, Lady Gaga addressed the doubters. "I was diagnosed with PTSD and fibromyalgia, which many people don't think is real, and I don't even know what the fuck to say about that. But I’ll tell you what it is. It’s a syndrome that is essentially a cyclone of stress-induced pain." Stress-induced pain is exactly what the Tel Aviv University study, the Clinical Journal of Pain study, and Dr. Bernstein describe in relation to the chronic-pain condition.

In his paper, Dr. Bernstein wrote: "Fibromyalgia is real. Fibromyalgia has an entry in the 10th edition of The International Classification of Diseases." He added that the pressure for doctors to be productive is part of the problem. "Let us imagine a world where doctors did not have to worry about their 'clinical productivity;' where doctors did not determine disability or endorse impairments; where doctors did not have to maintain the façade of omniscience. In that world, a patient presenting with widespread pain, sleep disturbances and tender points gets our sympathy and our attention without recrimination." Maybe one day that world will be a reality.