What you need to know about this painful—and puzzling—condition

By Natasha Persaud

As many as 5 million people in the United States population (over 90 percent of them women) may have fibromyalgia, but many have yet to be diagnosed. In the meantime, they experience widespread pain and a diminished quality of life. We asked Kevin Fontaine, Ph.D., associate professor of medicine in the division of rheumatology at the Johns Hopkins University School of Medicine, to explain this puzzling syndrome.

What symptoms characterize fibromyalgia?

People with this syndrome complain of unrelenting body pain and tenderness. They experience poor sleep and fatigue, and some have other troubling symptoms. It’s not unusual for sufferers to experience irritable bowel syndrome, chronic headaches, chemical sensitivities (such as to medications, foods and fabrics), jaw pain, discomfort in the bladder, restless legs syndrome and/or a mood disorder such as depression or anxiety. Many people also report so-called "fibro fog," or an inability to concentrate and recall information.

Typically, onset of fibromyalgia pain is fairly sudden. For some patients, there is a triggering event such as an injury, illness, surgery or emotional trauma. From one day to the next, they experience an increase in feelings of pain. And these symptoms never seem to abate, although they can wax and wane for reasons that are not understood.

Someone with fibromyalgia could be struggling for months or years with these symptoms, going from doctor to doctor, before finally being diagnosed. Fibromyalgia symptoms are legitimate, and they require medical attention.

What type of doctor should I see if I suspect fibromyalgia?

It’s important to find a doctor who will listen. Patients report that some doctors don’t believe that fibromyalgia is a legitimate medical condition, which may help explain why it can take years to be diagnosed and why patients sometimes feel disrespected and even stigmatized when they try to get help.

Start with your primary-care doctor, since he or she already has a relationship with you and is likely to take your complaints seriously. You may then be referred to a rheumatologist or pain specialist. Persist with getting the best care.

If you’re looking for a doctor who specializes in fibromyalgia, the National Fibromyalgia Association offers a physician directory.

How to Help Your Doctor

Since a doctor relies heavily on your self-reports to make a diagnosis and to guide treatment, keep a diary to track how well you’re feeling from day to day. Include:

  • Your level of pain: Note where you hurt, and rate your overall level pain on a scale of 1 to 10, with 1 indicating little to no pain and 10 indicating the worst pain you’ve ever experienced.
  • Daytime fatigue: Jot down whether fatigue prevents you from doing any of your usual activities, such as going to work, exercising or running errands.
  • A sleep history: Write down the number of hours you slept the night before and whether you had difficulty falling or staying asleep.
  • Your mood: State whether you feel generally upbeat, mildly depressed or worse.

How are other conditions ruled out?

Fibromyalgia can be mistaken for numerous conditions, including multiple sclerosis, Lyme disease, rheumatoid arthritis, lupus, diabetes, Sjogren’s disease, Raynaud’s disease, Parkinson’s, menopause, depression...the list goes on and on. Testing can help determine if one of those conditions is actually the cause of your symptoms.

There are some clues that fibromyalgia is the actual culprit, often because other conditions are ruled out. Although the pain you feel is similar to that of arthritis, fibromyalgia produces no visible physical changes, so x-rays, biopsies and blood tests may show nothing unusual. You can rule out chronic fatigue syndrome, which is often mistaken for fibromyalgia, if you experience a higher level of body pain and tenderness. Pain from a musculoskeletal injury or a strain tends to be localized and usually improves with rest and, perhaps, anti-inflammatory medications, such as ibuprofen. Fibromyalgia, on the other hand, involves widespread pain and tenderness that doesn’t seem to improve over time.

How is fibromyalgia finally diagnosed?

Unfortunately, there is no laboratory test for fibromyalgia. A diagnosis is made based on a medical history, self-reports and a physical examination. The doctor will pay attention to whether you report widespread body pain on both the left and right sides of your body and both above and below the waist.

The doctor will also test your pain sensitivity by applying light pressure to 18 specific points on the body. These tender points are located along the neck, shoulders, back, buttocks, knees and elbows. Someone with fibromyalgia will usually experience fairly severe pain right away when touched in these spots.

A person must have pain in at least 11 of the 18 points to receive a diagnosis. Your symptoms must also have lasted for at least three months. In that time frame, temporary pain from, say, a pulled muscle or the flu would most likely have subsided.

How is fibromyalgia treated?

Right now, we have no cure for fibromyalgia. The treatments we do have involve managing various symptoms, such as pain, sleep problems, headaches, irritable bowel syndrome and/or mood disorders. To date, the FDA has approved three medications for fibromyalgia: pregabalin, duloxetine hydrochloride and milnacipran, but other drugs may be prescribed, including pain relievers, antidepressants, muscle relaxants and sleep medications.

Individuals with fibromyalgia may have difficulty tolerating these medications, so it's not unusual to try different medications with a doctor's supervision to see what works best.

Otherwise, lifestyle therapies are key. Regular physical activity or exercise can produce small to modest improvements in pain, fatigue, sleep, mood and quality of life. Even if you experience pain during exercise, stay as physically active as possible every day. Keep up with lifestyle activities such as walking the dog, stretching, putting away groceries and light housekeeping. Some people with fibromyalgia can, and eventually do, engage in a traditional exercise program.

According to the National Fibromyalgia Association, walking, the use of a stationary bicycle, and aqua therapy (with a floatation device that allows you to remain upright in the pool) seem to be the most suitable activities for fibromyalgia patients. For some people, it's helpful to work with a physical therapist or an exercise physiologist.

Ideally, people with fibromyalgia should maintain a consistent level of activity every day. Fight the temptation to do too much or too little, and pace yourself. When you’re feeling well, try not to overdo it by, for example, walking the mall for the entire day. When you have a flare, try to get out of bed, stretch and do light activities. If you’re in pain, start off slowly, with 10 minutes of activity, then gradually work toward accumulating 30 minutes most days of the week, which is the general recommendation for wellness.

Sleep is a major problem for people with fibromyalgia, and increasing physical activity may promote better sleep. Also try a healthy diet, avoiding alcohol in the evening, cutting down on caffeine, going to bed at the same time every night, deep breathing and listening to calming music.

Managing stress can also be helpful, as many people with fibromyalgia report that their symptoms worsen during periods of stress. Deep breathing exercises, meditation, talking to friends and family, reading scripture, and writing down problems and potential solutions can sometimes be beneficial.

Other treatments that may help: acupuncture, chiropractic care, biofeedback, massage therapy, cognitive behavioral therapies, yoga, deep breathing, hypnosis and other relaxation techniques. Some people with fibromyalgia report that physical therapies, such as massage, produce an analgesic effect, providing several days of pain relief.

What helps a person to cope?

Keeping a positive attitude is extremely important when you have fibromyalgia. It’s easy to get depressed, and a third of patients have a mood disorder, either as a symptom or consequence of fibromyalgia. Staying as physically active as possible can go a long way towards improving mood. It may also be helpful to take an antidepressant, which may also provide some pain relief.

Set goals for yourself to keep yourself motivated. Wear a step counter and aim for a certain number of steps each day. Make plans to go out regularly with friends and participate in social activities regardless of how you feel. Don’t let fibromyalgia win.

For More Information

Researchers continue to conduct studies to better understand fibromyalgia and how to treat it. Many researchers now believe that the widespread pain of fibromylagia is due to abnormalities in central nervous system function. Changes in the stress response could account for the symptoms. With more research, we can hope for breakthroughs in treatment.

Updated by Remedy Health Media

Publication Review By: the Editorial Staff at Healthcommunities.com

Published: 01 Feb 2009

Last Modified: 28 Oct 2014