Fibromyalgia, a widely misunderstood disease, confuses and frustrates both patients and doctors. I know this because I saw it on both sides, both as a doctor and as a woman with the disease.
This common chronic disease is characterized by generalized muscle pain, fatigue, and brain fog. An estimated 5 million Americans currently suffer from the disorder, and nearly 90 percent of those diagnosed are women.
However, there is still a lot of confusion about the disease and how it is treated. Here are five truths about fibromyalgia that most doctors don’t know about:
1. Fibromyalgia is real and can be treated, but it requires a holistic approach.
Fibromyalgia research has lagged behind other diseases, tainted by controversy and a century of arguments about whether it is a “real” disease.
This changed in 2002, when an innovative study showed abnormalities in the way the brain treats pain in fibromyalgia. These brain imaging studies provided objective data to demonstrate that fibromyalgia was “real” and sparked a decade of intensive research, resulting in three FDA-approved medications that produce painful pain signals.
But these medications don’t treat the often more debilitating symptoms of fatigue and confusing thinking called “fibrofog.” To do this, doctors and patients must be well informed about different treatment options, especially holistic approaches such as dietary modification to reduce inflammation or add supplements to stimulate cellular energy production.
2. It is no longer a complete mystery.
I often hear that myth has repeated that “we don’t know what causes fibromyalgia.” Recent surveys of doctors reveal that most doctors still do not know how to help their fibromyalgia patients, despite the existence of very effective treatments. Fibromyalgia is often described in medical journals as “puzzled,” “mysterious,” and “confused.”
Television commercials that say fibromyalgia is an overactive pain condition. Nerves don’t tell the whole story. In fact, pain management problems are just the tip of the iceberg. A much larger factor is a response to stress (or danger) that has been extinguished and is constantly “red alert,” resulting in a chain reaction that causes fatigue, brain fog, and muscle aches.
The only way to permanently improve 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, causing pain and tenderness; hampering digestion and energy production; and eliminate hormones. It also turns out that pain-sensitive nerves increase the volume of your signals.
3. Fibromyalgia is primarily a sleep disorder.
Unfortunately, many doctors, including sleep specialists, are unaware of the sleep problems that accompany fibromyalgia. But fibromyalgia is, in many ways, a sleep disorder, a state of chronic and profound sleep deprivation. Studies have repeatedly shown that patients suffer from inadequate deep sleep that is often interrupted by “awake” brain waves. This famine of deep sleep contributes to tiredness, muscle pain and confused thinking characteristic of the disease.
Treating sleep is the key to treating fibromyalgia, and this is where I see most of the ways to reduce pain, fatigue, and brain fog. While sleep should always be improved before other treatments work, it’s essential to address this issue with your healthcare provider to treat hidden sleep problems like obstructive sleep apnea, and then add medications. and supplements to restore normal deep sleep.
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 overlaps in the areas of rheumatology, neurology, sleep, and pain medicine. Most of the care concerns submerged primary care physicians who do not have time to search for new treatment ideas in the sea of medical publications. Leading medical journals neglect fibromyalgia. In fact, since 1987, only one study on fibromyalgia has been published in the New England Journal of Medicine, the most widely published medical publication in the world.
Since the busy primary care provider doesn’t have the time to actively seek new fibromyalgia treatments, the research needs to get their attention differently – that is, from their patients. So in my new book, The FibroManual, I included a healthcare provider guide with research-backed medical advice for patients to get their doctor’s attention.