Questions and Answers About Fibromyalgia

What Is Fibromyalgia?

Fibromyalgia syndrome is a common and chronic disorder characterized by widespread muscle pain, fatigue and multiple tender points. The word fibromyalgia comes from the Latin term for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia). Tender points are specific places on the body — on the neck, shoulders, back, hips, and upper and lower extremities — where people with fibromyalgia feel pain in response to slight pressure.

Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles or other tissues. Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person’s ability to carry on daily activities. Also like arthritis, fibromyalgia is considered a rheumatic condition. You may wonder what exactly rheumatic means. Even physicians do not always agree on whether a disease is considered rheumatic. If you look up the word in the dictionary, you’ll find it comes from the Greek word rheum, which means flux — not an explanation that gives you a better understanding. In medicine, however, the term rheumatic means a medical condition that impairs the joints and/or soft tissues and causes chronic pain.

In addition to pain and fatigue, people who have fibromyalgia may experience:

  • Sleep disturbances
  • Morning stiffness
  • Headaches,
  • Irritable bowel syndrome,
  • Painful menstrual periods,
  • Numbness or tingling of the extremities
  • Restless legs syndrome
  • Temperature sensitivity
  • Cognitive and memory problems (sometimes referred to as “fibro fog”) or
  • A variety of other symptoms

Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Who Gets Fibromyalgia?

According to a paper published by the American College of Rheumatology (ACR), fibromyalgia affects 3 to 6 million — or as many as one in 50 — Americans. For unknown reasons, between 80 percent and 90 percent of those diagnosed with fibromyalgia are women; however, men and children also can be affected. Most people are diagnosed during middle age, although the symptoms often become present earlier in life.

People with certain rheumatic diseases, such as rheumatoid arthritis, systemic lupus erythematosus (commonly called lupus), or ankylosing spondylitis (spinal arthritis) may be more likely to have fibromyalgia, too.

Several studies indicate that women who have a family member with fibromyalgia are more likely to have fibromyalgia themselves, but the exact reason for this — whether it be hereditary or caused by environmental factors or both — is unknown. One study supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is trying to identify if certain genes predispose some people to fibromyalgia.

What Causes Fibromyalgia?

The causes of fibromyalgia are unknown, but there are probably a number of factors involved. Many people associate the development of fibromyalgia with a physically or emotionally stressful or traumatic event, such as an automobile accident. Some connect it to repetitive injuries. Others link it to an illness. People with rheumatoid arthritis and other autoimmune diseases, such as lupus, are particularly likely to develop fibromyalgia. For others, fibromyalgia seems to occur spontaneously.

Many researchers are examining other causes, including problems with how the central nervous system (the brain and spinal cord) processes pain.

Some scientists speculate that a person’s genes may regulate the way his or her body processes painful stimuli. According to this theory, people with fibromyalgia may have a gene or genes that cause them to react strongly to stimuli that most people would not perceive as painful. However, those genes — if they, in fact, exist — have not been identified.

How Is Fibromyalgia Diagnosed?

Research shows that people with fibromyalgia typically see many doctors before receiving the diagnosis. One reason for this may be that pain and fatigue, the main symptoms of fibromyalgia, overlap with many other conditions. Therefore, doctors often have to rule out other potential causes of these symptoms before making a diagnosis of fibromyalgia. Another reason is that there are currently no diagnostic laboratory tests for fibromyalgia; standard laboratory tests fail to reveal a physiologic reason for pain.

Because there is no generally accepted, objective test for fibromyalgia, some doctors unfortunately may conclude a patient’s pain is not real, or they may tell the patient there is little they can do.

A doctor familiar with fibromyalgia, however, can make a diagnosis based on two criteria established by the ACR: a history of widespread pain lasting more than 3 months and the presence of tender points. Pain is considered to be widespread when it affects all four quadrants of the body; that is, you must have pain in both your right and left sides as well as above and below the waist to be diagnosed with fibromyalgia. The ACR also has designated 18 sites on the body as possible tender points. For a fibromyalgia diagnosis, a person must have 11 or more tender points. One of these predesignated sites is considered a true tender point only if the person feels pain upon the application of 4 kilograms of pressure to the site. People who have fibromyalgia certainly may feel pain at other sites, too, but those 18 standard possible sites on the body are the criteria used for classification.

How Is Fibromyalgia Treated?

Fibromyalgia can be difficult to treat. Not all doctors are familiar with fibromyalgia and its treatment, so it is important to find a doctor who is. Many family physicians, general internists or rheumatologists (doctors who specialize in arthritis and other conditions that affect the joints or soft tissues) can treat fibromyalgia.

Fibromyalgia treatment often requires a team approach, with your doctor, a physical therapist, possibly other health professionals, and most importantly, yourself, all playing an active role. It can be hard to assemble this team, and you may struggle to find the right professionals to treat you. When you do, however, the combined expertise of these various professionals can help you improve your quality of life.

You may find several members of the treatment team you need at a clinic. There are pain clinics that specialize in pain and rheumatology clinics that specialize in arthritis and other rheumatic diseases, including fibromyalgia.

At present, there are no medications approved by the U.S. Food and Drug Administration (FDA) for treating fibromyalgia, although a few such drugs are in development. Doctors treat fibromyalgia with a variety of medications developed and approved for other purposes.

Following are some of the most commonly used categories of drugs for fibromyalgia:

Analgesics
Analgesics are painkillers. They range from over-the-counter acetaminophen (Tylenol*) to prescription medicines, such as tramadol (Ultram), and even stronger narcotic preparations. For a subset of people with fibromyalgia, narcotic medications are prescribed for severe muscle pain. However, there is no solid evidence showing that narcotics actually work to treat the chronic pain of fibromyalgia, and most doctors hesitate to prescribe them for long-term use because of the potential that the person taking them will become physically or psychologically dependent on them.

*Brand names are provided as examples only, and their inclusion does not mean that these products are endorsed by the National Institutes of Health or any other Government agency. Also, if a particular brand name is not mentioned, this does not mean or imply that the product is unsatisfactory.

Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)
As their name implies, nonsteroidal anti-inflammatory drugs, including aspirin, ibuprofen (Advil, Motrin), and naproxen sodium (Anaprox, Aleve), are used to treat inflammation. Although inflammation is not a symptom of fibromyalgia, NSAIDs also relieve pain. The drugs work by inhibiting substances in the body called prostaglandins, which play a role in pain and inflammation. These medications, some of which are available without a prescription, may help ease the muscle aches of fibromyalgia. They may also relieve menstrual cramps and the headaches often associated with fibromyalgia.

Antidepressants
Perhaps the most useful medications for fibromyalgia are several in the antidepressant class. Antidepressants elevate the levels of certain chemicals in the brain, including serotonin and norepinephrine (which was formerly called adrenaline). Low levels of these chemicals are associated not only with depression, but also with pain and fatigue. Increasing the levels of these chemicals can reduce pain in people who have fibromyalgia. Doctors prescribe several types of antidepressants for people with fibromyalgia, described below.

  • Tricyclic antidepressants — When taken at bedtime in dosages lower than those used to treat depression, tricyclic antidepressants can help promote restorative sleep in people with fibromyalgia. They also can relax painful muscles and heighten the effects of the body’s natural pain-killing substances called endorphins.Tricyclic antidepressants have been around for almost half a century. Some examples of tricyclic medications used to treat fibromyalgia include amitriptyline hydrochloride (Elavil, Endep), cyclobenzaprine (Cycloflex, Flexeril, Flexiban), doxepin (Adapin, Sinequan), and nortriptyline (Aventyl, Pamelor). Both amitriptyline and cyclobenzaprine have been proved useful for the treatment of fibromyalgia.

     

  • Selective serotonin reuptake inhibitors — If a tricyclic antidepressant fails to bring relief, doctors sometimes prescribe a newer type of antidepressant called a selective serotonin reuptake inhibitor (SSRI). As with tricyclics, doctors usually prescribe these for people with fibromyalgia in lower dosages than are used to treat depression. By promoting the release of serotonin, these drugs may reduce fatigue and some other symptoms associated with fibromyalgia. The group of SSRIs includes fluoxetine (Prozac), paroxetine (Paxil), and sertraline (Zoloft).SSRIs may be prescribed along with a tricyclic antidepressant. Doctors rarely prescribe SSRIs alone. Because they make people feel more energetic, they also interfere with sleep, which often is already a problem for people with fibromyalgia. Studies have shown that a combination therapy of the tricyclic amitriptyline and the SSRI fluoxetine resulted in greater improvements in the study participants’ fibromyalgia symptoms than either drug alone.

     

  • Mixed reuptake inhibitors — Some newer antidepressants raise levels of both serotonin and norepinephrine, and are therefore called mixed reuptake inhibitors. Examples of these medications include venlafaxine (Effexor) and nefazadone (Serzone). Researchers are actively studying the efficacy of these newer medications in treating fibromyalgia.

Benzodiazepines

Benzodiazepines help some people with fibromyalgia by relaxing tense, painful muscles and stabilizing the erratic brain waves that can interfere with deep sleep. Benzodiazepines also can relieve the symptoms of restless legs syndrome, which is common among people with fibromyalgia. Restless legs syndrome is characterized by unpleasant sensations in the legs as well as twitching, particularly at night. Because of the potential for addiction, doctors usually prescribe benzodiazepines only for people who have not responded to other therapies. Benzodiazepines include clonazepam (Klonopin) and diazepam (Valium).

Other medications

In addition to the previously described general categories of drugs, doctors may prescribe others, depending on a person’s specific symptoms or fibromyalgia-related conditions. For example, in recent years, two medications — tegaserod (Zelnorm) and alosetron (Lotronex) — have been approved by the FDA for the treatment of irritable bowel syndrome. Gabapentin (Neurontin) currently is being studied as a treatment for fibromyalgia. Other symptom-specific medications include sleep medications, muscle relaxants, and headache remedies.

People with fibromyalgia also may benefit from a combination of physical and occupational therapy, from learning pain-management and coping techniques, and from properly balancing rest and activity.

Complementary and Alternative Therapies

Many people with fibromyalgia also report varying degrees of success with complementary and alternative therapies, including massage, movement therapies (such as Pilates and the Feldenkrais method), chiropractic treatments, acupuncture, and various herbs and dietary supplements for different fibromyalgia symptoms.

Though some of these supplements are being studied for fibromyalgia, there is little, if any, scientific proof yet that they help. The FDA does not regulate the sale of dietary supplements, so information about side effects, the proper dosage, and the amount of a preparation’s active ingredient may not be well known. If you are using or would like to try a complementary or alternative therapy, you should first speak with your doctor, who may know more about the therapy’s effectiveness, as well as whether it is safe to try in combination with your medications.

Will Fibromyalgia Get Better With Time?

Fibromyalgia is a chronic condition, meaning it lasts a long time — possibly a lifetime. However, it may comfort you to know that fibromyalgia is not a progressive disease. It is never fatal, and it won’t cause damage to your joints, muscles or internal organs. In many people, the condition does improve over time.

What Can I Do To Try To Feel Better?

Besides taking medicine prescribed by your doctor, there are many things you can do to minimize the impact of fibromyalgia on your life. These include:

  • Getting enough sleep — Getting enough sleep and the right kind of sleep can help ease the pain and fatigue of fibromyalgia. Even so, many people with fibromyalgia have problems such as pain, restless legs syndrome or brain-wave irregularities that interfere with restful sleep. 
  • Exercising — Though pain and fatigue may make exercise and daily activities difficult, it’s crucial to be as physically active as possible. Research has repeatedly shown that regular exercise is one of the most effective treatments for fibromyalgia. People who have too much pain or fatigue to do vigorous exercise should begin with walking or other gentle exercise and build their endurance and intensity slowly. Although research has focused largely on the benefits of aerobic and flexibility exercises, a new NIAMS-supported study is examining the effects of adding strength training to the traditionally prescribed aerobic and flexibility exercises. 
  • Making changes at work — Most people with fibromyalgia continue to work, but they may have to make big changes to do so; for example, some people cut down the number of hours they work, switch to a less demanding job, or adapt a current job. If you face obstacles at work, such as an uncomfortable desk chair that leaves your back aching or difficulty lifting heavy boxes or files, your employer may make adaptations that will enable you to keep your job. An occupational therapist can help you design a more comfortable workstation or find more efficient and less painful ways to lift. 
  • Eating well — Although some people with fibromyalgia report feeling better when they eat or avoid certain foods, no specific diet has been proven to influence fibromyalgia. Of course, it is important to have a healthy, balanced diet. Not only will proper nutrition give you more energy and make you generally feel better, it will also help you avoid other health problems.

Where Can I Get More Information About Fibromyalgia?

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 1-877-22-NIAMS (226-4267) (free of charge)
TTY: (301) 565-2966
Fax: (301) 718-6366
E-mail: NIAMSInfo@mail.nih.gov
www.niams.nih.gov

National Center for Complementary and Alternative Medicine
National Institutes of Health
P.O. Box 7923
Gaithersburg, MD 20898-7923
Phone: 1-888-644-6226 (free of charge)
TTY: (866) 464-3615 (free of charge)
Fax: (866) 464-3616 (free of charge)
E-mail: info@nccam.nih.gov
www.nccam.nih.gov

Social Security Administration
Office of Public Inquiries
Windsor Park Building
6401 Security Boulevard
Baltimore, MD 21235
Phone: 1-800-772-1213 (free of charge)
TTY: 1-800-325-0778 (free of charge)
www.ssa.gov/disability

American College of Rheumatology/Association of Rheumatology Health Professionals
1800 Century Place, Suite 250
Atlanta, GA 30345-4300
Phone: (404) 633-3777
Fax: (404) 633-1870
www.rheumatology.org

Advocates for Fibromyalgia Funding, Treatment, Education, and Research
P.O. Box 768
Libertyville, IL 60048-0766
Phone: (847) 362-7807
Fax: (847) 680-3922
E-mail: info@affter.org
www.affter.org

Fibromyalgia Network
P.O. Box 31750
Tucson, AZ 85751-1750
Phone: 1-800-853-2929 (free of charge)
www.fmnetnews.com

National Fibromyalgia Association
2200 N. Glassell Street, Suite “A”
Orange, CA 92865
Phone: (714) 921-0150
www.fmaware.org

National Fibromyalgia Partnership
P.O. Box 160
Linden, VA 22642-0160
Phone: 1-866-725-4404 (free of charge)
Fax: 1-866-666-2727 (free of charge)
E-mail: mail@fmpartnership.org
www.fmpartnership.org

Arthritis Foundation
1330 West Peachtree Street
Atlanta, GA 30309
Phone: (404) 872-7100 or
1-800-283-7800 (free of charge) or call your local chapter
(To find your local chapter, check your phone directory or visit the foundation’s Web site.) www.arthritis.org

Acknowledgments: The NIAMS gratefully acknowledges the assistance of Deborah Ader, Ph.D., NIAMS, NIH; Karen Amour and Lynne Matallana, National Fibromyalgia Association, Orange, CA; Michele L. Boutaugh, M.P.H., Arthritis Foundation, Atlanta, GA; Daniel Clauw, M.D., and Leslie Crofford, M.D., University of Michigan, Ann Arbor; and Tamara Liller, National Fibromyalgia Partnership, Linden, VA, in the preparation of this material.

Last Updated: June 2004

Source: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health