Fibromyalgia, a widely misunderstood disease, confuses and frustrates patients and physicians alike. I know because I have seen it from both sides, as a doctor and as a woman with the disease.
This common chronic illness is characterized by widespread muscle pain, fatigue, and brain fog. It is estimated that 5 million Americans currently have the disorder and about 90% of those diagnosed are women.
However, much confusion remains about what the disease actually is and how it is 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.
Fibromyalgia research has lagged far behind other illnesses, mired in controversy and a century of argument over 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 provided the objective data to prove that fibromyalgia was “real” and triggered a decade of intensive research that resulted in three FDA-approved drugs that dull pain signals.
However, those drugs don’t treat the often more debilitating symptoms of fatigue and fuzzy thinking called “fibrofog.” To do this, doctors and patients need to be well informed about the different treatment options, especially holistic approaches like making dietary changes to reduce inflammation or adding supplements to boost cellular energy production.
2. It is no longer a complete mystery.
I often hear the myth repeated that “we don’t know what causes fibromyalgia.” Recent medical surveys reveal that most doctors still don’t know how to help their fibromyalgia patients, despite the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “puzzling,” “mysterious,” and “confusing.”
Television commercials that say fibromyalgia is a condition of overactive pain nerves don’t tell the whole story. In fact, pain processing problems are just 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 produces 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 throw hormones out of balance. It also ultimately causes the pain sensory nerves to increase the volume of their signals.
3. Fibromyalgia is primarily a sleep disorder.
Unfortunately, many doctors, including sleep specialists, are unaware of the sleep problems that come with fibromyalgia. But fibromyalgia is in many ways a sleep disorder, a state of chronic deep sleep deprivation. Studies have shown time and time again that patients experience inadequate deep sleep that is frequently interrupted by “awake” brain waves. This deep sleep famine contributes to the condition’s characteristic fatigue, muscle pain, and foggy thinking.
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 needs to be improved before any other treatment will work, so it’s vital to discuss this with your health care provider to treat hidden sleep issues like obstructive sleep apnea, and then add medications and supplements to help restore sleep normal deep.
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 sits uncomfortably astride the fields of rheumatology, neurology, sleep, and pain medicine. Most of the attention falls on overwhelmed primary care physicians who don’t have time to search through the sea of medical literature for new treatment ideas. 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 world’s most widely read medical journal.
Since the busy primary care provider does not have time to actively search for new fibromyalgia treatments, research has to be brought to their attention in some other way, namely by their patients. So in my new book, The FibroManual, I’ve included a healthcare provider guide with research-backed 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. But we don’t have cures for many chronic diseases, like diabetes and high blood pressure. What we have are effective treatments that manage those diseases well enough that they are minimally detrimental to health. And powerful treatments for fibromyalgia are there too.
When people ask me if I have recovered from fibromyalgia, I say, “Yes.” I have found ways to feel much better and minimize its impact on my life. Ultimately, I still have fibromyalgia, and there is no magic bullet that will completely eliminate all symptoms. It takes work, and I’ve learned that consistency in my self-care routine is essential to keeping my symptoms under control.