Fibromyalgia is a debilitating centralized pain condition experienced by millions of Americans. “Centralized” refers to origination or amplification of pain by a sufferer’s central nervous system. It is, in a true sense, pain that is “in one’s head” — but nevertheless as real and noxious as any other pain.
Ultimately, pain is always something experienced by the central nervous system. That is why spinal blocks work: if you block the brain’s ability to receive a peripheral pain signal, you eliminate the pain, even without addressing its source. Yet in fibromyalgia, the level of discomfort experienced is out of proportion. It has been described as “analogous to the ‘volume control setting’ being turned up too high.” In addition to widespread chronic pain, fibromyalgia sufferers typically experience a variety of other symptoms, including cognitive dysfunction, chronic fatigue, and poor sleep.
Fibromyalgia is real. Functional magnetic resonance studies clearly show that the brains of fibromyalgia patients are experiencing the pain they report (see, e.g., here and here), even though no overt source for the pain can be found. Researchers have identified several different genes that are strongly associated with the condition and could plausibly account for its symptoms. Despite this, some providers remain skeptical. Patients are disbelieved, treated as malingerers, or accused of drug-seeking. Some providers have gone so far as to advocate for doing away with the term fibromyalgia entirely.
Predictably, then, fibromyalgia is often handled poorly in the health care system. It is a condition that is overdiagnosed, underdiagnosed, and misdiagnosed.
People who do not meet the accepted diagnostic criteria for fibromyalgia are often diagnosed with it anyway. A 2015 study that applied the 2010 American College of Rheumatology preliminary diagnostic criteria to data collected from the US National Health Interview Survey (NHIS) estimated that nearly three-fourths of the respondents who reported having received a diagnosis of fibromyalgia by a health professional did not actually meet fibromyalgia criteria.
People who meet the diagnostic criteria for fibromyalgia are not diagnosed with it often enough. The aforementioned study also found that only 27% of individuals who reported symptoms consistent with fibromyalgia diagnostic guidelines had ever received a fibromyalgia diagnosis (the survey included questions that accounted for the presence of other conditions that might explain their symptoms, including rheumatoid arthritis and lupus). This is unfortunate, as medications and cognitive behavioral therapy may improve comfort and quality of life.
Fibromyalgia is easily confused with other conditions, including Lyme disease and variants of lupus. I have known at least four individuals who were misdiagnosed with fibromyalgia when they in fact had systemic lupus erythematosus (SLE) or Lyme and whose fibromyalgia-like symptoms abated when their underlying infectious or autoimmune disorder was addressed. I was misdiagnosed with fibromyalgia myself when my symptoms were due to undiagnosed drug-induced lupus erythematosus (DILE), an under-recognized condition that can result from long-term use of at least 40 different common medications. To complicate matters even further, fibromyalgia may co-occur with other conditions; for instance, more than 20% of people with SLE also have fibromyalgia.
This is a problem that should not be underestimated. In addition to the considerable suffering that could be reduced or eliminated with more evidence-based diagnoses, fibromyalgia costs billions of dollars annually in health care costs alone. A 2016 Canadian study estimated that fibromyalgia results in the equivalent of about US$3000 per person per year in health care expenditures, and about three weeks of work lost per year due to pain.
As mentioned above, about three-quarters of those dollars are likely being spent to treat patients who do not actually have fibromyalgia. However, accurate diagnoses of fibromyalgia can yield both reduced disability and lower health care costs. We can do better in handling this enigmatic and often confusing disease.
Barbie Zabielski