If fibromyalgia were a pastime, it would be The New York Times’ infamous Sunday crossword: a confounding, bedeviling, even exhausting puzzle. The disease – a complex illness marked by chronic muscle, tendon and ligament pain, fatigue and multiple tender points on the body – affects about 2% of Americans, most of them women.
Since the first clinical, controlled study of fibromyalgia was conducted nearly 30 years, doctors still haven’t been able to pinpoint a cause or find a definitive treatment.
Physicians and patients alike are frustrated. Countless women are told the pain must be in their head.
Identifying a Puzzling, Painful Disease
But experts are inching closer to the causes of fibromyalgia and treatment, thanks to maverick thinkers like Daniel Clauw, M.D., who saw clues where many did not.
In the late 1980s, many patients with lower back pain were referred to him.
“As it turned out, most of these people had pain in many areas other than the back, as well as fatigue, insomnia, and memory problems. They had fibromyalgia – unrecognized and undiagnosed, as it often was,” recalls Clauw, a professor of anesthesiology and medicine at the University of Michigan in Ann Arbor and director of the Chronic Pain and Fatigue Research Center there.
Fast-forward 20 years: Clauw is still at it, still excited. But he’s now one of a growing number of physicians and practitioners approaching the puzzle of fibromyalgia from a new angle – the pain. Aided by dramatic advances in brain imaging and mapping, they’re getting a clearer view of the disease.
“We may not know what causes fibromyalgia, but it absolutely exists,” says George Griffing, M.D., a professor of medicine at St. Louis University in Missouri.
Seeing Is Believing
In the 1950s, when fibromyalgia was first described, the illness was thought to be a rheumatologic disorder like lupus because it was characterized by musculoskeletal pain. Despite this hypothesis – or maybe because it was inaccurate – fibromyalgia remained difficult to treat for decades.
But a landmark 2002 study, published by Clauw in the medical journal Arthritis and Rheumatism, shed new light on the disease. Rather than being rooted in the muscles and joints, the current thinking revolves around pain and sensory "amplification," he says.
His research showed that fibromyalgia sufferers are doubly sensitive to pain.
Clauw produced scans to show that the brains of fibromyalgia sufferers display significant pain signals from finger squeezes so gentle that they barely register as unpleasant in people without the disease.
"It’s as if the volume control on pain and sensory processing is set too high in people with fibromyalgia," Clauw says. The level at which touch to the skin [or noise or odor] becomes painful or uncomfortable is much lower in someone with fibromyalgia than in someone without it.
The brain, he says, is the key to the puzzle and, by quieting it, you’ll treat and manage the illness more effectively than before.
4 Ways to Manage Fibromyalgia
Here are four ways to calm your mind and improve your quality of life with fibromyalgia:
1. Find a doctor who "gets it." If you’re sore all over, suffer overwhelming fatigue and have trouble sleeping but don’t know why, see a rheumatologist. Such specialists are best able to differentiate fibromyalgia from other illnesses with similar symptoms.
But if your diagnosis is clearly fibromyalgia, start “with a physician – any physician – who fully acknowledges that the disease exists,” Griffing says.
2. Carefully test available meds and treatments. Many studies have shown that anti-convulsants and antidepressants can lower the pain volume for people with fibromyalgia.
One study, reported in the January 2009 issue of The Journal of the American Medical Association (JAMA), revealed that antidepressants may reduce pain, depression, fatigue, sleep disturbances and improve quality of life.
The study showed that these drugs worked but with varying success. Tricyclic and tetracyclic antidepressants such as Elavil or Pamelor provided the most pain relief. Selective serotonin reuptake inhibitors (SSRIs) can help with fatigue and depression.
Because there’s not enough evidence on the long-term effects of antidepressants, patients should be evaluated regularly to determine if the benefits outweigh adverse effects, according to the JAMA report.
Clauw adds that patients should systematically try a few medications – butslowly. “One of the biggest problems I see is that doctors and patients want to try too many things at once,” he says. So they can’t tell if something is working or whether a new symptom is a side effect of a treatment.
“There is no silver bullet – not yet,” says Griffing. The cocktail approach – a dash of pharmacology here, a dose of non-drug therapies there – has been proven to work.
Coming soon: Neurostimulatory therapies in which the brain or spinal cord is stimulated by electricity or magnets to reduce pain. Ask your doctor about it.
3. Be your own advocate. Learn as much as you can about the disease and the myriad ways you can manage it. How do you find out about options? Sites like the American Fibromyalgia Syndrome Association, the National Fibromyalgia Partnership and Know Fibro, which Clauw helped develop, can help educate patients about non-drug approaches such as cognitive behavioral therapy.
“They’re an excellent way for people with fibromyalgia to get the non-drug therapies that are rarely prescribed in routine clinical practice,” he says.
4. Retrain your brain. The key to coping with the illness is to manage your brain’s sensitivity to stimuli – which means, in part, “unlearning what you’ve always done," says Barbara Keddy, Ph.D., professor emerita in the School of Nursing at Dalhousie University in Halifax, Nova Scotia. Keddy, founder of the blog womenandfibromyalgia.com, has struggled with and studied fibromyalgia for 40 years.
Living in the moment is one effective tool, she says. “It means being constantly aware of how your body is responding to different stimuli in the moment and working to breathe deeply, engaging your diaphragm and moving your body in different ways to subvert the stress response.”
For more information on this strategy, called the "relaxation response," check out relaxationresponse.org.
How Much Do You Know About Fibromyalgia?
Fibromyalgia is one of the world’s oldest medical mysteries. How much do you know about the illness? Find out now.
Source: By Megan Othersen Gorman, Special to Lifescript - Published June 25, 200
Posted: True Health Is True Wealth
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