The Changing Face of Fibromyalgia

Ah, the 17 billion dollar question: What is fibromyalgia, anyway, and how do you know if you have it?

First, a couple facts, courtesy of the Centers for Disease Control and Prevention. Fibromyalgia affects about 2% of the United States population, which is about 5 million individuals. The cost of treating fibromyalgia is about $3500 per person per year. That means that the cost of treating all those individuals with fibromyalgia costs about $17 billion per year.

This is significant and sobering, especially since fibromyalgia has often been considered a "disease of last resort." That is, if a doctor was unable to identify another disease process that was causing chronic pain, and if the doctor was able to identify 11 specific sore points on your body, then the doctor would say that you had fibromyalgia. The trouble with that diagnosis, however, is that it is a diagnosis of exclusion, not inclusion. Most diagnoses are made by identifying symptoms and causes: "This causes that, therefore you have X disease." But the diagnosis for fibromyalgia, for many years, was made by saying the opposite: "We don't know what causes that, therefore we'll call it fibromyalgia."

Research still has not proven what causes fibromyalgia, but we now know a whole lot more about fibromyalgia. What we now know may just surprise you.

It was always thought that women were affected more by fibromyalgia than men, but the gap is narrowing quickly. In the 1990's, research indicated that women were 7 times more likely than men to have fibromyalgia, but a 2006 study surprised the medical community by showing that women were only 1.6 times more likely than men to have fibromyalgia.

Fibromyalgia is also not a stand-alone diagnosis. Most people who have fibromyalgia also have one or more significant other diseases, such as anxiety, depression, irritable bowel syndrome, headache, chronic fatigue syndrome, systemic lupus erythematosus, and rheumatoid arthritis. This indicates that fibromyalgia is likely caused by a systemic issue, such as autoimmune disorders, undiagnosed dietary allergies, chronic inflammation, or hormonal imbalance. The trouble with a non-specific chronic pain is that the cause becomes more difficult to pin down, but research is advancing.

One of the greatest steps forward in the last several years regarding fibromyalgia was a study published in 2010 by the American College of Rheumatology (ACR).

(But before looking at that, here's a quick historical note: the ACR is responsible for the classification criteria of fibromyalgia. In 1990, the ACR developed standards that required the doctor to find tender areas on the patient's body. However, these standards often gave false positives and negatives. Patients and doctors also sometimes got the false impression that fibromyalgia was a disease of the muscles. Additionally, the tests were often performed incorrectly, perhaps using the wrong sets of tender points, or pushing too hard or too lightly. So the diagnosis of fibromyalgia often became based solely on the symptoms of the patients, without objective rationale to back it up. And, even worse, if a patient with fibromyalgia improved, they might no longer be diagnosed with fibromyalgia because they no longer have enough tender points even if all their other symptoms remain.)

So the ACR set out to redefine the basis of the fibromyalgia diagnosis. And it is no longer dependent on the old criteria of 11-18 tender points. Instead, the authors cleverly combined symptom severity with widespread pain to create a new diagnostic criteria for fibromyalgia. Simply put, it goes like this:

You can have widespread pain with moderately severe symptoms and be diagnosed with fibromyalgia. You can also have moderately widespread pain with severe symptoms and be diagnosed with fibromyalgia. Similar symptoms must have been present for at least 3 months. You must not have a disorder that would be responsible for these symptoms.

Simple! And no longer dependent on tender points, which means that greater emphasis may be placed on the cognitive aspects of fibromyalgia (the "fibro fog") and on the fact that fibromyalgia affects different people in different ways.

Although the diagnosis of fibromyalgia is still a diagnosis of exclusion and treatment will likely always remain an individualized, case-by-case recovery, research is allowing us to make large strides forward in defining, and thus conquering, this condition.