Fibromyalgia is a diagnosis in search of disease. It is descriptive of symptoms that vary from person to person. Doctors who even acknowledge the existence of fibromyalgia give the diagnosis as a last resort. To me, the diagnosis just means that the cause of the problems haven't been found.
Now a new drug to treat this ailment has been approved by the FDA. But to treat what? This is the heart of the controversy:
In some respects, the argument doesn't matter. The pain and symptoms are real enough. The question is what to do to help the patients. Often diet, exercise, and righting sleep problems can cure the problem. One of my first patients had "fibromyalgia". The cause was two-fold, but it took months of hunting to find the problems. First, she had banned pesticides from the 70s that had been seeping into their house. They removed that. Second, her husband snored something fierce and she hadn't slept for more than two hours in a row for over fifteen years. The latter problem was not something either of us thought of right from the beginning, but actually sleeping did more to reverse her symptoms than anything.
For patient advocacy groups and doctors who specialize in fibromyalgia, the Lyrica approval is a milestone. They say they hope Lyrica and two other drugs that may be approved this year will legitimize fibromyalgia, just as Prozac brought depression into the mainstream.
But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.
Here's my fibromyalgia protocol:
- No naps.
- No caffeine.
- Set bed time.
- Set bed time ritual.
- Set wake-up time.
- Light aerobic exercise for no more than 15 minutes around 3-4 p.m. (no later)
- Lots of water.
- Fresh diet: fruits, veggies, meat, light on carbs.
- Testing for food allergies.
- Testing for sub-clinical virus/bacteria infection.
- Support the immune system.
- Support other weak systems (right the hormones, if that's a problem).
With fibromyalgia, the woman has often felt crummy for years and years and just can't imagine not feeling bad. She doesn't remember what healthy felt like. She spends her days feeling the pain and that exacerbates the pain and further sensitizes her to it. It's a vicious cycle. She has also been dismissed by a multitude of doctors. She may end up in pain management. She may end up in the psychiatrist's office. And, she might need both, but she feels that her history and story haven't been honored.
With many fibromyalgia sufferers, there is often an underlying event that precipitates the episode. It takes some detective work to get to it. Sometimes the "cause" is never found but with enough lifestyle changes, the syndrome can be managed. Anecdotally, I've found that many fibromyalgia sufferers have suffered childhood traumas such as abuse, sexual abuse or something similar. This is not so strange. One of the history questions for Junior Rheumatoid Arthritis is whether the child has an alcoholic parent. Very often, he or she does. I have yet to work with a fibromyalgia patient who doesn't have an emotional component to the syndrome.
These ladies, and some men, need encouragement and support. They are, without fail, sensitive souls who I believe "absorb" the pain around them. Helping them to create boundaries both in their relationships and for their own psychological safety is paramount to future health. It is a frustrating disease and the people who endure the pain experience real suffering.
So, while I believe that fibromyalgia is a bogus diagnosis and shouldn't be masked with some new drug sure to score pharmaceutical companies money, I believe that these patients should be taken seriously. Something is wrong. That something needs to be found. And in these days of managed care, rushed appointments and overtaxed doctors, patients are often dismissed as crazy. It's just easier than admitting that the doctor is baffled.