“When the first population studies of fibromyalgia came out, it was obvious that the demographics of fibromyalgia patients in the population looked very different from the fibromyalgia patients that doctors like me were seeing in rheumatology clinics and those that were participating in pharmaceutical trials of fibromyalgia medications,” says Dr. Walitt, who is also adjunct associate professor at Georgetown University. “We did this work because we wanted to have a better idea of how the fibromyalgia diagnosis is being used in the U.S., which includes understanding when it may be overused as well as when it may be underused.”
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Explore This IssueOctober 2016
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Such factors as obesity or smoking can worsen fibromyalgia symptoms, says Dr. Walitt, but the diagnosis “is more dependent on individual demographics than on the symptoms themselves. We suggest this is evidence that each person’s unique experience of symptoms is interpreted and affected by society and culture, which is known as social construction,” he says.
According to the study, middle-aged, Caucasian women may be overrepresented in fibromyalgia studies drawn from specialty clinics, general surveys and pharmaceutical trials, although population-based epidemiological studies show a female predominance of 2–3:1 and no important differences related to age or ethnicity.
Demographics play a role in whether or not a patient receives a fibromyalgia diagnosis, says Dr. Walitt.
“Fibromyalgia represents the presence of a particular set of symptoms of substantial severity. The NHIS data demonstrate that 75% of persons reporting a fibromyalgia diagnosis do not reach that level of symptom severity,” he says. In their study, they also found that “75% of persons with symptoms that are severe enough to meet our study’s criteria for fibromyalgia did not report a diagnosis from a health practitioner. It is likely that their symptoms are explained in other ways. This demonstrates that the medical community is not diagnosing fibromyalgia as intended by the criteria,” says Dr. Walitt.
Dr. Bernstein diagnoses fibromyalgia based on her clinical assessment and medical history. She may use the ACR modified criteria survey if a patient is skeptical of this diagnosis, and also finds the criteria helpful to quantify symptoms in some cases.
“I find it helpful for the patient, but I don’t use it for diagnosis,” says Dr. Bernstein. She does not feel that most of her fibromyalgia patients are misdiagnosed. She says most of her patients have high levels of distress and widespread pain, and have seen other physicians, including rheumatologists, perhaps for years. “We see a high level of healthcare utilization among our patients.”