The Fibromyalgia Syndrome

Excerpted from
What Your Doctor May Not Tell You About Fibromyalgia : The Revolutionary Treatment That Can Reverse The Disease
By R. Paul St. Amand, M.D., Claudia Craig Marek, M.A.

What is fibromyalgia? Twenty-seven or so years after the condition was given a name, the medical community and patients are still looking for that answer. My coauthor, Claudia, asked her son, Malcolm Potter, that question when he was about ten years old. His response was, "It feels like all my muscles want to throw up!" That intuitive response still seems as descriptive as anything else that's been offered. Another one is: "the irritable everything syndrome," coined by Dr. Hugh Smythe of Toronto, Ontario. From ten-year-old boy to prominent researcher-two phrases that pretty well cover it, wouldn't you say?

Fibromyalgia is different from other illnesses. If we were to describe thyroid diseases, diabetes, or rheumatoid arthritis, for example, we could easily recite their distinguishing characteristics. Most conditions have a single set of lab tests to help confirm the diagnosis. Often, one major organ or gland is the culprit. That's not so with fibromyalgia, because it doesn't pick on just a single type of cell or limited body part. Instead, it shows up with myriad seemingly unrelated symptoms in endless combinations. At first glance, the only thing these complaints seem to have in common is that they coexist in a single human being. Symptoms don't neatly fit into diagnostic categories. Perversely, they spill profusely over the borders that define any particular medical specialty. You just can't quite tuck it in. It remains elusive, treacherous, troublesome to pin down, and taxing to treat.

Though there is no set pattern, fibromyalgia assaults enough systems to raise a warning flag to the alert physician. The same amalgam of characteristics drives patients to seek help from whatever specialist they deem best suited to handle the chief complaints. Specialists, by definition, work in somewhat limited spheres. That narrow focus may not allow a panoramic view where all the symptoms are displayed. Thinking within their particular fields, they find it difficult to expand perspectives to include minutiae into an all-encompassing diagnosis. So they end up treating just a few symptoms as if those represent the entire disease. Therefore, irritable bowel syndrome, interstitial cystitis, vulvar pain syndrome, chronic fatigue syndrome, chronic candidiasis, and myofascial pain syndrome are treated as separate entities though they represent facets of fibromyalgia. Often, physicians in family practice, internal medicine, and rheumatology, who more routinely perform complete patient evaluations, are more adept at identifying the many outlying symptoms.

I've already described the environment in which I practiced in my early years. I was visited by patients with numerous complaints, who had seen many doctors, and had taken many medications. They still weren't well, but certainly more frustrated. Their family doctors had examined and tested them, often in memorable detail. The conclusion: "Everything's normal; it's just your nerves." Family and friends eventually echoed those words and accepted the fact that their loved one was just a neurotic who was cracking up under stress. I equally fell into that trap because I was taught that methodology and had no evidence to contradict it.

What we were all missing was the connecting thread among patients. Glaringly obvious was the sheer volume of complaints. Sure, many patients found it difficult to pinpoint exactly when their symptoms had begun. Most had great trouble discerning the order in which they appeared. They wilted under questioning as if they were being cross-examined and a wrong answer would result in condemnation. Migraines, fatigue, depression, muscle aches, dizziness, nasal congestion, gas, diarrhea, breaking nails, numbness, bladder infections, and on and on. Shouldn't someone have caught on sooner? All of them were repeating the same things!

Some mornings I would wake up and feel so lethargic it was all I could do to make it to work. For several years, I'd attributed my muscle pain to the few fender-benders that I'd been in. I'd thought the migraine headaches were hereditary. And I would tell myself I'd caught a "bug" when the dizziness and fatigue became a problem. The strange thing was the symptoms seemed to get worse as time went on, not better, despite the treatment I'd received from traditional M.D.s, chiropractors, holistic practitioners, acupuncturists, masseuses, and herbalists.

About a year ago, I was so frustrated I rattled off all my recurring symptoms to my [previous] doctor and demanded, "I've been here before with these problems. What's wrong with me?" To which she replied with annoying frankness, "I don't know."

-Michelle, California

Not unlike other illnesses, the severity and impact of fibromyalgia differ from patient to patient. Some are able to lead relatively normal lives. Often they live with a number of irritating symptoms for years when suddenly the hesitation is over and the full-blown, unrelenting disease hits. Others become considerably debilitated early on or even homebound. There are those who feel well until traumatized by an accident, surgery, extensive dental work, infection, or emotional stress. They single out those events as triggers that precipitate their illnesses. In most cases, when taking a more detailed history, we can elucidate many, much earlier complaints. But for the vast number of people, symptoms sneak up insidiously, wax and wane, gradually intensify, and eventually never go away.

In addition to the physical complaints, the vast majority of patients also have difficulties with memory and concentration - cognitive difficulties that have been nicknamed "fibrofog." This embarrassing entanglement often takes a heavier toll on patients than do the aches and pains. It raises fear of serious brain deterioration, and begs reassurances that it isn't the embrace of premature Alzheimer's. You can appreciate the alarm invoked by the neurological involvement upon reading the following description.