Fibromyalgia, a largely misunderstood condition, confuses and frustrates patients and doctors alike. I know this because I’ve seen it from both sides, as a doctor and as a woman living with the disease.
This common chronic condition is characterized by widespread muscle pain, fatigue, and brain fog. An estimated 5 million Americans currently suffer from the disease, and approximately 90% of those diagnosed are women.
However, there remains considerable confusion about the true nature of the disease 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 lags far behind other diseases, mired in controversy and a century of arguments over whether it is a “real” disease.
That changed in 2002, when a pioneering 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 sparked a decade of intensive research that resulted in three FDA-approved medications that address dull pain.
However, these medications do not address the often more debilitating symptoms of fatigue and fuzzy thinking known as “fibro fog.” To do this, both doctors and patients must be well-informed about the various treatment options, especially holistic approaches such as dietary changes to reduce inflammation or the addition of supplements to boost cellular energy production.
2. It’s no longer a complete mystery.
I often hear the myth that “we don’t know what causes fibromyalgia.” Recent medical surveys reveal that most doctors still don’t know how to help their patients with fibromyalgia, despite the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “baffling,” “mysterious,” and “confusing.”
TV ads that claim 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,” causing a chain reaction that results in fatigue, brain fog, and muscle pain.
The only way to achieve lasting improvement in all these symptoms is to systematically address the negative effects of a chronically overactive stress response on the body. 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 unbalancing hormones. It also causes 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 accompany fibromyalgia. But fibromyalgia is in many ways a sleep disorder—a state of chronic deep sleep deprivation. Studies have repeatedly shown that patients experience inadequate deep sleep that is frequently interrupted by “waking” brain waves. This deep sleep deprivation contributes to the fatigue, muscle pain, and foggy thinking characteristic of the disease.
Addressing sleep is key to treating fibromyalgia, and this is where I see the greatest benefit in reducing pain, fatigue, and brain fog. Sleep must be improved before any other treatment will work, so it is essential to discuss with your healthcare provider to address hidden sleep problems like obstructive sleep apnea, and then add medications and supplements to help 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 straddles the fields of rheumatology, neurology, sleep, and pain medicine. Most of the attention is focused on busy primary care physicians who don’t have time to search the sea of medical journals for new treatment ideas. Major 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 read medical journal in the world.
Since busy primary care providers don’t have time to actively research new treatments for fibromyalgia, research must be brought to their attention in another way—by their patients. So, in my new book, The Fibro Manual, I’ve included a research-based, medically guided provider’s guide for patients to call their physician’s attention.
5. Fibromyalgia is incurable, but there are effective treatments.
There is no cure for fibromyalgia. But we don’t have cures for many chronic conditions, such as diabetes and high blood pressure. What we do have are effective treatments that manage these conditions well enough to cause little harm to health. And powerful fibromyalgia treatments are here too.
When people ask me if I’m cured of fibromyalgia, I say, “Yes.” I’ve found ways to feel much better and minimize its impact on my life. Ultimately, I still have fibromyalgia, and there’s no magic formula that completely eliminates all symptoms. It takes work, and I’ve learned that consistency in my self-care routine is key to controlling my symptoms.
