We all need to hear those words from time to time. But for people with the often frustrating, sometimes frightening, and always challenging condition called fibromyalgia syndrome (FMS), it can take several years and half a dozen doctors to get a clean bill of mental health. Fibromyalgia is a ghost of an ailment; it can cause life-altering pain, but it remains invisible to conventional diagnostic tests. Without hard data to study, the medical community has been slow to admit that fibromyalgia exists, let alone to develop treatment strategies. But new research not only shows that fibromyalgia is real, but it also offers hope in beating the pain. And people seeking relief from fibromyalgia have more options than ever before.
When The Pain Doesn’t Stop
About 5 million people, 2% of the US population, suffer from fibromyalgia, according to estimates by the Arthritis Foundation. Most are women. (In Canada, nearly 1 million have the disease.) The pain profile varies from one person to another, but it typically takes the form of intense burning or aching sensations in various muscles throughout the body, often accompanied by stiffness. Another hallmark of FMS is extreme fatigue, which may be partly due to the fact that the pain prevents restful sleep. Fibromyalgia pain, which can be intense, may be felt every day and continue unabated for months. “If you feel this kind of pain and fatigue for 6 months or more and don’t know the cause, suspect fibromyalgia,” says Don Goldenberg, MD, director of the Arthritis/Fibromyalgia Center at Newton Wellesley Hospital in Boston and a medical advisor for the Arthritis Foundation. Unlike arthritis, fibromyalgia doesn’t produce pain or swelling in joints. And the usual tools for detecting disease—such as x-rays and blood tests—also fail to turn up anything abnormal in people with the illness. Which is why, in the past, some doctors were certain that the condition was a psychological problem rather than a physical one. Like the elephant in the Dr. Seuss story Horton Hears a Who, fibromyalgia patients were thought to be making fanciful claims, since no one else could see what they were talking about. But like Horton, it turns out that FMS patients were right all along. “We’ve really accumulated evidence that FMS is a real, physical disorder,” says Dr. Goldenberg. Doctors can diagnose fibromyalgia by following the guidelines of the American College of Rheumatology (ACR). If your doctor isn’t familiar with FMS, Dr. Goldenberg suggests contacting the ACR or the Arthritis Foundation to be referred to a rheumatologist in your area.[pagebreak]
What’s Going On?
Ask the experts what causes fibromyalgia—what’s happening in the body to produce the pain, fatigue, and other symptoms—and you get a resigned, if deeply considered, shrug. “There are a couple of different theories,” says Daniel Rooks, PhD, director of the Be Well! Tanger Center for Health Management at Beth Israel Deaconess Medical Center in Boston. “We have a long way to go before we fully understand it, but we are making progress.” For example, a study presented at a meeting of the ACR suggests that in people with fibromyalgia, the central nervous system (brain and spinal cord) doesn’t process pain signals normally. In the study, researchers applied heat to the hands of a group of FMS patients and a group of healthy subjects. In the FMS patients, the blips of pain from each jolt of heat didn’t subside between applications the way they did in the healthy group. Instead, the nervous system held on to the pain signals. The sensations of pain accumulated, causing the FMS patients to report feeling more pain than the other group reported. This phenomenon is not only a sign that there’s a problem with the nervous system, but it may also be a cause of the pain, says Roland Staud, MD, the lead researcher for the study. “We’re all constantly exposed to stimuli as we go through our day,” explains Dr. Staud. The inability to let go of this input may contribute to the constant state of pain in people with FMS, he says. But what causes a person’s nervous system to become so grabby isn’t known.
Taking Control
If you’ve got a mysterious ailment that’s difficult to diagnose, has an unknown cause, and isn’t well understood, is there much room for hope? There’s plenty. According to Dr. Goldenberg, less than 20% of people diagnosed with fibromyalgia are disabled by the condition. And many cases get better over time. “In fact, about 60% of our patients say they feel better now than they did 10 years ago,” Dr. Goldenberg notes. Putting yourself on the positive side of those statistics takes careful planning, but you can tilt the odds in your favor by following these suggestions: Find a savvy partner. “One of the most important things for someone with FMS is to partner with a doctor,” says Dr. Rooks. “A doctor can give you the information you need to make important medical decisions and support you in doing self-care.” Because what works with one person may not work with another, FMS is tricky to treat with medication, says Dr. Rooks, so you’ll have to communicate openly with your doctor to find a regimen that helps you.[pagebreak] Exercise carefully. “Exercise plays a keystone role in managing FMS,” says Dr. Rooks. Some of the most encouraging studies of fibromyalgia show that regular exercise can produce impressive improvements in the pain of FMS sufferers. For example, Dr. Rooks conducted a study in which 31 women performed cardiovascular, strength training, and flexibility exercises three times a week. After 20 weeks, they reported less pain, fatigue, and stiffness, were more fit, and had higher levels of function. Because the pain of fibromyalgia makes exercising difficult, Dr. Rooks recommends starting light and progressing slowly. “You should start with something that feels easy and doesn’t leave you tired afterward, such as 5 minutes of walking. Increase about 30 seconds a week.” Bonus: An exercise program not only has physical benefits, but it can also boost your morale by letting you experience success at a time when you often feel nothing’s working. Know your limits. Whether exercising at the gym or cleaning the living room, someone with FMS needs to be honest about what he can and can’t do. Overexertion can result in painful consequences, but doing too little can cheat you of the benefits of exercise. How do you know when enough’s enough? Listen to your body. It’s okay to exercise or be active while feeling the pain level that you typically experience from fibromyalgia. But if exercising causes pain levels to become more intense, back off, and try a lighter workload when you feel ready. Don’t be afraid. Exercise is difficult for some FMS patients not only because of the pain they feel but because it seems as if their body is in a fragile state. But while pain is usually a warning sign, the muscle pain produced by FMS is a symptom of the illness. “There’s no evidence that people with FMS are more susceptible to injury than people without it,” says Dr. Rooks. He notes that in his study, all the subjects performed the exercise program regularly even while experiencing pain from FMS, but none of them suffered any injuries. Relax. Stress seems to worsen FMS symptoms, so make it a priority to give yourself a break. “Hot baths, meditation, listening to music; take full advantage of whatever works for you,” says Dr. Rooks. And if you have FMS, it’s really important to schedule your day appropriately for your level of strength and energy. “Trying to push yourself will just cause added stress, and that can exacerbate your pain and fatigue.” Seek out support. “Many people with FMS have never met anyone else with the condition,” Dr. Rooks says. Communicate with others in the same boat, and you won’t feel so alone. You can also swap advice. Just remember to focus on solutions, not problems. “You want to spend your energy solving problems, not focusing on the fact that these problems exist,” says Dr. Rooks. [pagebreak]
Nutrition Advice From A Pro
“If you have fibromyalgia, you’re at great risk for poor nutrition,” says Rachel Trevethan, RD, a nutritionist in private practice and faculty member at the University of Dayton in Ohio. When symptoms flare, eating right becomes less of a priority. Trevethan, who specializes in giving nutrition advice to people with fibromyalgia (FMS), makes the following suggestions: Eat to sleep. Sleep is a precious commodity for FMS sufferers. Avoid sleep-busters such as caffeine and alcohol for at least 5 hours before going to bed. For a sleep-promoting bedtime snack, try a high-carb bowl of whole grain cereal sprinkled with fruit, or a bowl of warm oatmeal. Keep a record. Many people with FMS experience irritable bowel symptoms such as diarrhea or upset stomach. Keeping a record of what foods you eat can help you identify and avoid the foods that trigger these symptoms. Plan ahead. People with fibromyalgia typically have good days and bad days. “When you’re feeling better, prepare some meals in advance, and keep them in the fridge or freezer,” says Trevethan. You may not feel like chopping vegetables when your pain flares up, but if there’s a salad already made, you’ll be less tempted to order a pizza (or you’ll order a smaller one). Graze, don’t gorge. Eating several snacks and small meals every day instead of a few large spreads gives your body a constant energy supply to offset the draining fatigue of FMS. For at least three of these meal-ettes, include milk, carbohydrates (whole grains, fruits, or vegetables), and monounsaturated fats (nuts, olives, or avocados). “Eat when you’re hungry; stop before you’re overfull,” says Trevethan. For most people, that means munching every 3 hours or so. Be sensibly skeptical. There’s a lot of misinformation about fibromyalgia, says Trevethan, which is not surprising, since there are so many unanswered questions about it. When you come across a recommendation for this supplement or that nutrient, check it with a reputable source, such as your specialist or the American Dietetic Association www.eatright.org.[pagebreak]
Exercise Helps
Why exercise eases fibromyalgia (FMS) symptoms isn’t yet known. But if you want to try an exercise program, follow these guidelines (and consult with your physician first): Start light, go slow. It’s okay to exercise through your “normal” pain levels, but if exercise causes the pain to worsen significantly, back off. Mix it up. Daniel Rooks, PhD, of Beth Israel Deaconess Medical Center in Boston, suggests including cardiovascular activities such as walking, strength training (lift light weights), and stretching exercises (yoga or tai chi are great for this). Bring a friend. In his study, Dr. Rooks had his patients exercise in groups. He credits this as one reason why they were able to keep exercising despite their pain; it made the exercise sessions a fun, social experience instead of a chore. (If you exercise with friends who don’t have FMS, make sure they understand your limitations.)
Do You Have Fibromyalgia?
The American College of Rheumatology says that a person has fibromyalgia (FMS) if they meet the following conditions:
Widespread muscle pain that lasts 3 months or morePain in at least 11 of 18 designated tender points
Your doctor, or a rheumatologist, can check the tender points to diagnose FMS.For More Information about FMS, contact the following sources:
Arthritis Foundation at (800) 283-7800, or online at www.arthritis.org for a free brochure on fibromyalgia and to order The Arthritis Foundation’s Guide to Good Living with FibromyalgiaFibromyalgia message board at www.arthritis.orgAmerican College of Rheumatology at (404) 633-3777, or www.rheumatology.org.
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