Quick — can you name a medical condition that:
- afflicts about 10 million Americans
- causes widespread joint pain, memory problems, mood and sleep disturbances, and headaches
- mimics the symptoms of some other pain conditions
- stumps powerful medical tools
- puzzles a wide swath of the medical community
If you said, fibromyalgia, take a bow — and welcome to the complicated, distressing, puzzling and frustrating world of millions of sufferers.
Because even powerful tools like magnetic resonance imaging can't seem to find the cause of the patients' pain, it may take years to get a proper diagnosis, says researcher Daniel Clauw, M.D., a rheumatologist and professor of anesthesiology and medicine at the University of Michigan Medical School in Ann Arbor.
"Doctors often don't know how to treat fibromyalgia, or they treat it wrong with opioids," Clauw says. Some doctors don't consider it a separate medical condition, but see it as a chronic pain condition brought on by stress.
Clauw doesn't buy into the notion that fibromyalgia isn't a real medical problem. In the field of pain medicine, "fibromyalgia's realities are well established," he says.
Here, a few facts that he and other researchers say may help release fibromyalgia from foggy misconceptions.
1. FACT: Fibromyalgia is a neurological disease affecting a person's sensory processing system
Fibromyalgia does not involve inflammation or damage to joints. Brain imaging and studies have shown that fibromyalgia is a disorder of the central nervous system.
"It's a neurological disease driven by the central nervous system," says Clauw. "The brain and spinal cord in people with fibromyalgia process pain signals differently than in other people so that they have heightened sensitivity to pain."
Other sensory reactions — response to light and noise, for instance — are amplified as well, says Clauw, noting that brain imaging has helped cement such observations: "The brain regions that are more active in people with fibromyalgia are the multisensory areas" — those that respond to pain, heat, pressure.
2. FACT: Diagnosis involves assessment of symptom severity
No blood test or imaging can confirm fibromyalgia; a detailed assessment of symptoms is all doctors and patients have to make a diagnosis.
In 2010, the American College of Rheumatology came up with new criteria for diagnosing fibromyalgia. Doctors, through a patient survey, assess first how widespread pain is in 19 areas of the body, says Clauw. The more widespread the pain, the more likely it stems from the way the brain is processing pain messages, not from a specific peripheral injury. Patients also rate levels of fatigue, memory and sleep disturbance, depression, headache and other physical symptoms.
3. FACT: Fibromyalgia does not damage muscles, joints and connective tissue
Rheumatologists consider fibromyalgia to be a musculoskeletal disease because of the discomfort in the muscles and joints, says Don Goldenberg, M.D., director of the Arthritis-Fibromyalgia Center, Newton Wellesley Hospital, Newton, Mass., and a medical adviser to the Arthritis Foundation. "But there is no specific disease in those areas. Evidence suggests that most of the pain has to do with changes in pain processing."
Next page: Fibromyalgia and autoimmune disease. »