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.
Still, there remains a lot of confusion about what the illness really is and how it’s treated. Here are five truths about fibromyalgia that are not widely known, even by most doctors:
1. Fibromyalgia is real and can be treated—but it requires a holistic approach.
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.
But those medications don’t treat the often more debilitating symptoms of fatigue and fuzzy thinking called “fibrofog.” To do that, doctors and patients have to be knowledgeable about different treatment options—especially holistic approaches such as making dietary changes to reduce inflammation or adding supplements to boost cellular energy production.
2. It’s no longer a complete mystery.
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.
The only way to get lasting improvement in all of these symptoms is to systematically address the negative effects on the body of a chronic hyperactive stress response. A chronically activated stress response wreaks havoc by preventing deep sleep and keeping muscles tense, leading to pain and tenderness; impairing digestion and energy production; and throwing hormones out of balance. It also ultimately causes the pain-sensing nerves to increase the volume of their signals.
3. Fibromyalgia is primarily a sleep disorder.
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.
Treating sleep is the key to treating fibromyalgia, and it’s where I see the most benefit in reducing pain, fatigue, and brain fog. Sleep must always be improved before any other treatment will work, so it’s vital to address this with your health care provider to treat hidden sleep problems like obstructive sleep apnea and then add medications and supplements to help restore normal deep sleep. Finding the right mattress is also important.
4. Most doctors don’t know much about fibromyalgia—and it’s not their fault.
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.
Since the busy primary care provider does not have time to actively search out new treatments for fibromyalgia, research has to be brought to their attention in some other way—namely by their patients. So in my new book, The FibroManual, I included a health care provider guide with research-supported medical guidance for patients to bring to their doctor’s attention.
5. There is no cure for fibromyalgia, but there are effective treatments.
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.
When people ask me if I have recovered from fibromyalgia, I say, “Yes.” I've found ways to feel much better and minimize its impact on my life. Ultimately, I do still have fibromyalgia, and there is no magic bullet that completely eliminates all symptoms. It requires work, and I have learned that consistency in my self-care routine is essential to keeping my symptoms under control.
Ginevra Liptan, M.D. is the author of “The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor” and a graduate of Tufts University School of Medicine. She is board-certified in internal medicine and trained in functional medicine, a holistic approach that blends both western and alternative medicine. After developing fibromyalgia as a medical student, Dr. Liptan spent many years using herself as guinea pig to find successful treatments, and has fine-tuned her approach by treating thousands of patients. She is one of the few clinical specialists in the world to focus solely on fibromyalgia and directs The Frida Center for Fibromyalgia near Portland, Oregon.