I'm A Doctor With Fibromyalgia. Here's What I Wish People Understood About It

Fibromyalgia, a widely misunderstood illness, confuses and frustrates both patients and doctors alike. I know because I’ve seen it from both sides—as both a physician and a woman with the illness myself.

This common chronic disease is characterized by widespread muscle pain, fatigue, and brain fog. It’s estimated that 5 million Americans currently suffer from the disorder, and close to 90 percent of those diagnosed are women.

Research on fibromyalgia has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it’s a “real” illness.

This changed in 2002, when a groundbreaking study showed abnormalities in how the brain processes pain in fibromyalgia. These brain-imaging studies gave the objective data to prove fibromyalgia was “real” and triggered a decade of intensive research resulting in three drugs approved by the FDA that dull pain signals.

I often hear the myth repeated that “we don’t know what causes fibromyalgia.” Recent physician surveys reveal that most doctors still don’t know how to help their fibromyalgia patients—in spite of the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “perplexing,” “mysterious,” and “confusing.”

The TV commercials that say fibromyalgia is a condition of hyperactive pain nerves don’t tell the whole story. In fact, pain-processing problems are only the tip of the iceberg. A much bigger factor is a stress (or danger) response that has gone haywire and is constantly on “red alert,” leading to a chain reaction that results in fatigue, brain fog, and muscle pain.

Unfortunately, many doctors, even sleep specialists, are not aware of the sleep issues that come with fibromyalgia. But fibromyalgia is in many ways a sleep disorder, a state of chronic deep sleep deprivation. Studies have demonstrated over and over that patients experience inadequate deep sleep that is frequently interrupted by “wakeful” brain waves. This deep-sleep starvation contributes to the fatigue, muscle pain, and foggy thinking characteristic of the condition.

Fibromyalgia is an orphan disease that is not claimed by any specialty and instead awkwardly straddles the fields of rheumatology, neurology, sleep, and pain medicine. The majority of care falls to overwhelmed primary care doctors who don’t have time to go searching for new treatment ideas among the sea of medical publications. The big medical journals neglect fibromyalgia. In fact, since 1987, only one fibromyalgia study has been published in the New England Journal of Medicine, the most widely read medical publication in the world.

There is no cure for fibromyalgia—yet. But we don’t have cures for many chronic illnesses, like diabetes and high blood pressure. What we do have are effective treatments that manage those diseases well enough that they are minimally detrimental to one’s health. And powerful treatments for fibromyalgia are out there as well.