You’re in pain all over, always tired and can’t sleep, yet your doctor can’t figure out what’s wrong. Those are all fibromyalgia symptoms. Learn more about fibromyalgia from a doctor who's been pioneering in the field, plus 4 ways to manage. …
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 ago, doctors still haven’t been able to pinpoint a cause.
Physicians and patients alike are frustrated about how to treat fibromyalgia. Countless women are told the pain must be in their head.
What is Fibromyalgia? 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 seeking lower back pain relief were referred to him.
“As it turned out, most of [them] had pain in 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.
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 how to treat 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, and the source of sore neck muscles or other sore muscles on the body.
“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 – it remained difficult to treat fibromyalgia 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 fibromyalgia 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, helping soothe sore neck muscles and other aches and pains. 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 – but slowly.
“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's no silver bullet yet,” Griffing says. 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 fibromyalgia pain symptoms. Ask your doctor about it.
3. Be your own advocate. Learn as much as you can about the disease and the many ways you can treat fibromyalgia. 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 to deal with fibromyalgia symptoms, she says, to help avoid dweling on sore neck muscles and other aches and pains.
“It means being constantly aware of how your body is responding to different stimuli and working to breathe deeply, engaging your diaphragm and moving 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 and how to treat fibromyalgia?
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