Research from the National Fibromyalgia Association shows that it takes an average of three to five years for the condition to be diagnosed.
Many factors contribute to that delay. Fibromyalgia patients can look the picture of health, despite their significant pain, and there's no specific known cause. For doctors, that translates into the frustrating reality that there's no objective diagnostic lab tests they can do. A fibromyalgia diagnosis is based on the patient's description of symptoms.
Andrea Cooper, 52, of Phoenix, Md., is a veteran of doctors' visits. "There have been times when I almost wished a test would come back positive for a 'real' disease so that at least the doctor would know that something was truly wrong," says Cooper. "Coming from a cancer survivor, that's pretty serious stuff."
Diagnosis by elimination
Good medical practice requires that doctors eliminate other possible causes of pain, sleep disorders, and other symptoms before identifying fibromyalgia as the problem.
"I think it's misdiagnosed most of the time when symptoms first present," says Todd Sitzman, MD, a past president of the American Academy of Pain Medicine. "Because by definition it's a diagnosis of exclusion. The physician looks for other sources for their chronic fatigue, for their chronic muscle pain, sleep disturbance, and mood disorder before they assign a diagnosis of fibromyalgia."
Depression is a common misdiagnosis because of overlapping symptoms such as poor sleep, depressed mood, and diffuse body pain.
Symptoms that cross diseases and specialties
Fibromyalgia is an unspecific constellation of symptoms falling into a number of medical specialties. Symptoms range far and wide from dry eyes to irritable bowel syndrome and migraines to just feeling exhausted. And the pain isn't localized to one body part. It can be everywhere.
"I've seen fibromyalgia patients who have pain all over and doctors have said: 'well you have this type of neck pain, you have elbow pain, you have knee pain,'" says Robert Bonakdar, MD, director of pain management at the Scripps Center for Integrative Medicine in San Diego. "Patients then see different specialists and no one has put the pieces together. It takes a while until everything's put together and you say 'a-ha.'"
Fibromyalgia symptoms can overlap with those of other conditions, such as rheumatoid arthritis or hypothyroidism. (Visit our A-Z Health Library for a full list.) This overlap can make it a minefield for physicians who have little experience with the condition.