The truth about fibromyalgia

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This common but misunderstood pain syndrome is yielding to simple treatments

For Peggy (not her real name), a 36-year-old administrator in a high-pressure job, it all started so simply. Two years ago, she moved a heavy piece of equipment. Her back began to hurt, but her doctor told her the pain would go away soon. But it didn't. Instead, it took on a life of its own, throbbing up and down her back. When medical tests showed nothing, her doctor told her that the pain was probably stress-related.

The pain intensified and became maddening. The doctor sent her to a physical therapist. After one session, she felt better. After two, she felt worse.

Next a chiropractor. Then an acupuncturist. Then a massage therapist. And others. It was always the same story: initial relief followed by more pain in more places. "After a few months," she recalls, "I could barely move.I was dragging myself to work. As soon as I got home, all I could do was lie on the floor. I felt like I was going out of my mind."

Finally she was referred to neurologist Norman Harden, MD, director of the pain clinic at the Rehabilitation Institute of Chicago. "Even before the physical exam--after I told him my story--he said it sounded like something called 'fibromyalgia.' I never heard of the disease."

A lot of other people haven't heard of it either--but they have it. Fibromyalgia is a musculoskeletal disorder consisting of terrible pain in the muscles and soft tissues throughout different parts of the body, unrelenting fatigue, anxiety, depression--and a lack of any obvious causes found in physical examination, blood tests and x-rays. And it's not rare. The latest studies suggest that it may affect about 2% of the U.S. population. That means there are 3 to 6 million Americans walking around--or, like Peggy, feeling that they must lie down--with these awful symptoms.

People with fibromyalgia may feel disabled, no longer able to hold a full-time job or perform everyday activities. Even hugging can be painful. Two-thirds are women. Some have seen a dozen or more physicians over the years, only to be told that their sole problem is hypochondria. But the American College of Rheumatology, National Institutes of Health (which spent over $2 million dollars on fibromyalgia research last year), brain researchers and growing numbers of physicians know otherwise. "Their symptoms are real, with a biological cause," says Cleveland Clinic rheumatologist William Wilke, MD.

The good news is, simple treatments, including a lot of self-treatments, can give amazing relief. Sufferers and doctors alike just have to understand what they're dealing with.

Uncovering the truth
For many people, it's not until they see a rheumatologist that they get a proper diagnosis. But it's happenstance that rheumatologists end up with the most fibromyalgia patients. "Fibromyalgia is unrelated to arthritis," notes Dr. Wilke. "The only relationship is that patients complain of pain, so they're sent to us."

It usually doesn't take a rheumatologist long to discover that there's no inflammatory autoimmune disease, like arthritis. Along with physical examination, Dr. Wilke asks some simple questions. "I ask if they hurt only when they move. Most inflammatory conditions hurt a lot more when you move, while fibromyalgia pain continues and may be worse even when you're not moving."

His next questions aren't even about the pain. "Most patients with fibro-myalgia feel tired, are not sleeping well, and may be anxious and depressed," says Dr. Wilke.

Then he asks if they're hurting between the shoulder blades. That's 1 of 18 "tender points" that doctors look for in fibromyalgia. To meet the American College of Rheumatology criteria for the syndrome, a person must feel pain in at least 11 of these places when a doctor applies moderate finger pressure. (The pressure would not bother a healthy person.) Dr. Wilke asks about the area between the shoulder blades first because, in his experience, it's the most common and painful sore spot among fibromyalgia patients.

It wasn't until the tender-point examination that Peggy began to believe the diagnosis. "What really surprised me was when the doctor just touched these different places--on my neck, on my elbows--where I didn't even know I had a problem. The pain really shocked me. It was very bizarre, and almost scary. I thought, 'Maybe I really do have this fibromyalgia.' " Experts agree that it's important not to get hung up on exact numbers and locations of tender points. "A better way to think about it is that people with fibromyalgia are more sensitive all over their bodies," says Dr. Wilke. There's still no single medical test that can show if a person has fibromyalgia. The diagnosis is based on careful history, in-cluding a positive re-sponse to the type of questions Dr. Wilke asks; the tender-point exam; and blood and other medical tests to rule out serious diseases that can resemble fibromyalgia. Dr. Wilke notes three diseases physicians can easily confuse with fibromyalgia:

Hypothyroidism A doctor can or-der a thyroid-stimulating hormone blood test (TSH) to check for this.

Inflammatory muscle or joint diseases, like arthritis To rule them out, Dr. Wilke recommends a creatinine kinase (CK) enzyme blood test and a careful physical exam.

Polymyalgia rheumatica (also called giant cell arteritis) is a rare autoimmune disease that usually strikes people over 55. Left untreated, it can cause blindness and stroke. "So particularly for people over 55, a test is a good idea," says Dr. Wilke.

What's behind the pain
Though there's no diagnostic test available for fibromyalgia, new re-search suggests that people with fibromyalgia are physiologically different. At the University of Ala-bama, Birmingham, a team of re-searchers led by Laurence Bradley, PhD, professor of medicine, division of clinical immunology and rheumatology, is pioneering this inquiry.

In one study, the team found that the cerebral spinal fluid in those with fibromyalgia had more substance P, a neuropeptide that carries pain signals. High levels mean that it's more likely that pain is perceived. In another study, they saw that people with fibromyalgia had diminished blood flow--meaning less functional activity in two areas of the brainthat help regulate the amount ofpain signals the brain receives. With this physiology, says Dr. Bradley, "It's almost like people with fibro-myalgia have a pain filter that's not working well."

The exact initial trigger for this faulty filter is unknown, but the most prominent theory is severe stress.

Therapy that works
While there are still many questions about the causes of fibromyalgia, optimism is the order of the day for those who treat it. So far, there's little scientific evidence regarding the effectiveness of treatments, but doctors have found remarkably simple therapies that seem to make people feel better and that make good therapeutic sense. The best therapy of all, top experts say, seems to be regular, moderate aerobic exercise.

"It's a simple equation," says Dr. Harden. "The more exercise they do, the better they can feel." It doesn't matter what kind of aerobic exercise--swimming, biking, jogging, walking, dancing--as long as they hit their target heart rate for at least 30 minutes a day. "But it's even better if they do it 30 minutes twice a day," says Dr. Harden. "That's what we recommend for our patients who are severely affected. And they improve." Why? Maybe because aerobic exercise beefs up the body's supply of endorphins, a natural pain-dampening, sleep-deepening substance. Exercise increases levels of serotonin and growth hormone, the exact pain-reducing, muscle-repair hormone that people with fibromyalgia may lack. And, Dr. Wilke notes, exercise increases blood flow to the muscles. "We know that people with fibromyalgia do have slightly less blood flow to their muscles, which might also contribute to pain. Exercise can reverse that."

But there's a hitch. Like Peggy, many people with fibromyalgia simply stop moving because they are in so much pain. Their muscles may have atrophied. They have to start out very gradually. And even then, some of their fears are borne out; for the first few weeks, exercise can make fibromyalgia pain worse. Depending on their tolerance, they may have to cut back somewhat."A lot of my work involves encouraging people to get over that hump," says Dr. Wilke.

This is the stage when pain-reducing drugs are appropriate. "We choose from a wide spectrum of analgesic drugs that are safe for short-term use," says Dr. Harden. "Aspirin and other nonsteroidal anti-inflammatories (NSAIDS) can be very effective for some people. What's not appropriate for people with fibromyalgia," he says, "is long-term use of dependency-producing painkillers, like the opioids Percodan and Vicodin."

"At first, it was one step forward and two steps back," Peggy recalls. "I started my exercise program on a treadmill. But I had to switch to the water exercise because the pain in my knees was so bad. Eventually, I was able to get back on a treadmill."

Another therapy that seems to work: antidepressant medications. You'd almost think that these medications were designed for fibromyalgia. Scientists believe that the antidepressants may work at the level of the central nervous system, causing changes in brain chemistry, changes that alter pain perception, deepen sleep and improve mood.

Experts we talked to say tricyclic antidepressants have the best track record with fibromyalgia patients so far. "They're non-habit forming, they're relatively safe and they're particularly good at getting people into stage 3 and 4 sleep," says Dr. Harden. Unfortunately, the tricyclics do have more annoying side effects, like dry mouth, than the newer "superselective" serotonin-enhancing drugs. "There is anecdotal evidence that the newer antidepressants like Prozac are not as helpful in fibromyalgia, but that may vary according to the individual," says Dr. Harden.

And he warns that the dependency-producing sleep aids in the benzodiazapene class are virtually never appropriate for fibromyalgia patients. "The benzo's are often prescribed for sleep, but they ultimately disrupt the type of sleep that fibromyalgia patients need most, and they are addictive," says Dr. Harden.

Even among tricyclics there are differences, so it's important for fibromyalgia patients to work closely with their doctors over time, to identify the medication and the dosage that works best for them.

So aerobic exercise and antidepressant medications are the mainstays of current fibromyalgia treatment. But there are also other self-care measures that physicians have good reasons to think may help some patients. These range from massage to stress-reduction techniques and are usually added to exercise and drugs. (See "Self-Care for Fibromyalgia," on p. 90.)

For Peggy, Dr. Harden's 4-week fibromyalgia program--in which she started exercising, taking low-dose antidepressants, doing physical therapy and learning relaxation techniques--let her reclaim her life. "Now, I have the tools to manage the illness," she reports. "I'm back at work. They didn't exactly welcome me back--in fact, no one thought I would stick with it. But at my last review, I got the highest performance rating in the department and a promotion to go with it."

Self-care for fibromyalgia
Along with aerobic exercise and antidepressant medication, the experts we talked to mentioned other therapies that seemed to be helpful for their patients. The reports of their success at this point are preliminary--controlled studies of their effectiveness are just getting under way now. But these measures are all safe, and there are good reasons to believe they can help.

Physical therapy People with fibromyalgia may benefit from several sessions with a physical therapist who is familiar with the syndrome, says Norman Harden, MD, director of the pain clinic at the Rehabilitation Institute of Chicago. "They can learn the correct postures for work, sleep or even play, which makes a big difference in reducing muscle pain." A physician should be able to make a referral to a physical therapist.

Cognitive therapy "We know that people's thoughts and feelings can influence the transmission of pain signals through the central nervous system," says Francis Keefe, PhD, direc-tor of Duke University's Pain Management Program. "By changing their thinking, feelings and behaviors, people experiencing pain may actually be able to reduce it." That's why his program teaches cognitive therapy. "It helps people recognize their overly negative thinking and change it to positive but realistic thinking."

A physician should be able to refer you to a therapist who can teach you these techniques.

Stress management In Dr. Keefe's program, relaxation techniques taught to fibromyalgia patients include meditation, deep breathing, progressive muscle relaxation, guided imagery and handwarming exercises. Ask your physician for a referral to a psychologist or stress-reduction program to learn these techniques.

Stretching "When we touch the tender points, people's muscles often feel ropy and knotted," says Dr. Harden. "Stretching lengthens the muscles and pulls out some of the ropiness, so it may have a direct pain-reducing benefit."

Massage "Massage brings more blood to the muscles, so it makes sense," says Dr. Harden. If you can't afford a regular massage, perhaps you can induce your spouse to do the job!

Warm baths and hot tubs "A lot of people tell me that heat hydrotherapies work," says Dr. Harden.

As with many other diseases, there's a lot of misinformation about fibromyalgia out there, especially among chat groups on the Internet, our experts say. For reliable information about fibromyalgia, send a self-addressed stamped business-size envelope to the National Chronic Fatigue Syndrome and Fibromyalgia Association, P.O. Box 18426, Kansas City, MO 64133. For a free brochure on fibromyalgia from the Arthritis Foundation, call 1-800-283-7800, or contact your local branch.

PHOTOS (BLACK & WHITE): Woman's back

PHOTO (COLOR): Are you hurting between the shoulder blades? That's 1 of 18 "tender points" that doctors look for in fibromyalgia.

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By Cathy Perlmutter with Laura Goldstein

FINDING DR. RIGHT
If you suspect that you or someone you know has fibromyalgia, neurologist Norman Harden, MD, suggests you start with a family doctor. "Sound them out. Ask them if they believe fibromyalgia exists, and if they're familiar with the criteria for diagnosis (like the tender-point exam and a complete history, including questions about fatigue). If they don't know much about it, they should say, 'I'll go read about it.' " Handing them this article may be a good starting point.

If the doctor doesn't take the symptoms seriously and you still suspect fibromyalgia, your best bet is a rheumatologist, a pain clinic, or a physiatrist. There are even a few neurologists, like Dr. Harden, who have a special interest in fibromyalgia, but you must ask them directly. SOURCES: Laurence Bradley, PhD, clinical psychologist and professor of medicine, division of clinical immunology and rheumatology, University of Alabama at Birmingham; Norman Harden, MD, neurologist and director, Center for Pain Studies, Rehabilitation Institute of Chicago; Francis Keefe, PhD, director, pain-management program, Duke University Medical Center; John H. Renner, MD, president, Consumer Health Research Institute, Kansas City, MO; William Wilke, MD, rheumatologist, department of rheumatic and immunologic diseases, Cleveland Clinic Foundation.

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