Fibromyalgia, a very poorly understood disease, confuses and frustrates both patients and doctors. I know because I have seen it from both sides, as a doctor and as a woman with the disease.
This common chronic disease is characterized by widespread muscle pain, fatigue and brain fog. It is estimated that 5 million Americans currently suffer from the disorder, and about 90 percent of those diagnosed are women.
Even so, there is still a lot of confusion about what the disease really 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 diseases, clogged by controversy and a century of discussions about whether it is a “real” disease.
This changed in 2002, when an innovative study showed abnormalities in the way the brain processes pain in fibromyalgia. These brain imaging studies provided objective data to demonstrate that fibromyalgia was “real” and triggered a decade of intensive research that resulted in three FDA-approved medications that attenuated pain signals.
But those medications do not treat the often more debilitating symptoms of fatigue and diffuse thinking called “fibrofog.” To do that, doctors and patients must know the different treatment options, especially holistic approaches, such as 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 that myth repeats that “we don’t know what causes fibromyalgia.” Recent surveys of doctors reveal that most doctors still do not know how to help their patients with fibromyalgia, despite the existence of some very effective treatments. Fibromyalgia is often described in medical journals as “disconcerting,” “mysterious,” and “confusing.”
Television ads that say fibromyalgia is a condition of hyperactive pain, nerves do not tell the whole story. In fact, pain processing problems are just the tip of the iceberg. A much more important factor is a stress response (or danger) that has broken down and is constantly on “red alert”, which leads to a chain reaction that produces fatigue, brain fog and muscle pain.
The only way to obtain a lasting improvement in all 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, which causes pain and tenderness; deterioration of digestion and energy production; and throwing hormones out of balance. Ultimately, it also causes the nerves that detect pain to increase the volume of their signals.
3. Fibromyalgia is primarily a sleep disorder.
Unfortunately, many doctors, including sleep specialists, are not aware of the sleep problems that accompany fibromyalgia. But fibromyalgia is in many ways a sleep disorder, a state of chronic deprivation of deep sleep. Studies have shown time and again that patients experience inadequate deep sleep that is usually interrupted by “awake” brain waves. This starvation due to deep sleep contributes to fatigue, muscle aches and fog thoughts characteristic of the disease.
Treating sleep is the key to treating fibromyalgia, and that is where I see the greatest benefit to reduce pain, fatigue and brain fog. Sleep should always be improved before any other treatment works, so it is vital that you discuss it with your health care provider to treat hidden sleep problems such as obstructive sleep apnea and then add medications and supplements to help restore normal deep sleep.
4. Most doctors do not know much about fibromyalgia, and it is not their fault.
Fibromyalgia is an orphan disease that is not claimed by any specialty and, instead, extends between the fields of rheumatology, neurology, sleep and the analgesic. The majority of attention falls to overwhelmed primary care physicians who do not have time to seek new treatment ideas among the sea of medical publications. Large medical journals neglect fibromyalgia. In fact, since 1987, only one study of fibromyalgia has been published in the New England Journal of Medicine , the world’s most widely read medical publication.
Since the busy primary care provider does not have time to actively seek new treatments for fibromyalgia, the research must be treated in some other way, that is, by their patients. So in my new book, The FibroManual , I included a medical-oriented healthcare provider guide with research support for patients to call 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 have no cures for many chronic diseases, such as diabetes and high blood pressure. What we do have are effective treatments that control these diseases well enough to be minimally harmful to health. And there are also powerful treatments for fibromyalgia.
When people ask me if I have recovered from fibromyalgia, I say: “Yes.” I have found ways to feel better and minimize its impact on my life. Ultimately, I 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 keep my symptoms under control.