Figuring Out Fibromyalgia
There’s another unsettling component to fibromyalgia: Some doctors don’t believe it really exists. The offices of the Fibromyalgia and Fatigue Center in King of Prussia, Pa., where I went to get to the bottom of my dilemma, are typically packed with patients. Many have seen dozens of general practitioners and specialists, begging for an explanation or just to be believed. “The majority of our patients have been dealing with their symptoms for at least a couple of years, some as long as 30 or 35 years,” says Andre Garabédian, M.D., the center’s national assistant medical director. “Most have seen many physicians and have been told there was nothing wrong with them.” The reasons are complex, Garabédian tells me. First, doctors want to rule out serious diseases, including diabetes, autoimmune disorders like lupus or multiple sclerosis, and rheumatologic conditions, such as Raynaud’s disease. Also, reliable fibro research, although accelerating, is relatively new, and little of what has been published has filtered down to mainstream physicians, Garabédian says. “Based on what most of them study in medical school, they have no idea what they are dealing with.”
Sexism is another likely cause of disbelief within the medical community. Of the 2 percent to 4 percent of the population affected by fibromyalgia, most are women, according to the American College of Rheumatology. “You have a disease of [mainly] women who have tests that are technically normal,” says Jacob Teitelbaum, M.D., medical director of the national Fibromyalgia and Fatigue Centers and author of From Fatigued to Fantastic! (Penguin Group Inc.). “Doctors say, ‘I don’t know what’s wrong with you, so you must be crazy.’ There’s clearly a sexist component.”
Needed: a definitive test
The lack of a reliable test also holds back fibro diagnoses. Fibromyalgia is diagnosed based on a host of symptoms and a physical examination to determine whether a patient is suffering from “tender points,” specific places on the body that are sensitive to touch. “One of the major problems is that there are no biological markers or tests that confirm the diagnosis and say, ‘This is definitely fibro,’ ” Garabédian explains. These obstacles typically result in patients being sent home with a misdiagnosis of depression and/or with a referral to a specialist, such as a neurologist, rheumatologist, orthopedist or endocrinologist, Garabédian says. “Over 90 percent of my patients have been told that while they may have pain, there’s nothing wrong with them or they’re depressed,” he says. “Some have already been given multiple prescriptions for antidepressants.”
Seeking solutions in the brain
Garabédian tests his patients’ levels of serotonin—one of the essential “feel-good” neurotransmitters, or brain chemicals—as he believes the root of the problem resides not in the muscles, tendons, joints or other soft tissues but in a segment of the brain called the hypothalamus. “The hypothalamus controls serotonin production,” he explains. “It’s the main regulator of hormones, sleep, mood, pain sensation and stress management.” He believes that as a result of this lack of serotonin, many fibro patients may develop emotional issues, including obsessivecompulsive disorder, panic disorder, depression and chronic anxiety. “This is why traditional doctors give them selective serotonin reuptake inhibitors [SSRIs],” Garabédian says. But contrary to popular belief, these antidepressant medications do not make serotonin. “They try to concentrate what you already have,” he explains. “But because most fibro sufferers have very low or nondetectable serotonin levels, this usually results in poor response to these medications.
“Fibromyalgia patients’ adrenal glands also produce less cortisol in response to stress than do healthy people’s, due to overutilization and resulting adrenal exhaustion,” Garabédian adds, pointing out that despite its negative reputation, small amounts of this hormone are beneficial because it helps people better cope with stress.