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Who Gets Fibromyalgia?
Scientists estimate that fibromyalgia affects 5 million Americans age 18 or older. For unknown reasons, between 80 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.
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 heredity, shared environmental factors, or both—is unknown.
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. 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. There have already been several genes identified that occur more commonly in fibromyalgia patients, and NIAMS-supported researchers are currently looking at other possibilities.
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 those of 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 criteria established by the American College of Rheumatology (ACR): a history of widespread pain lasting more than 3 months, and the presence of diffuse tenderness. Pain is considered to be widespread when it affects all four quadrants of the body, meaning it must be felt on both the left and right sides of the body as well as above and below the waist. ACR also has designated 18 sites on the body as possible tender points. To meet the strict criteria for a fibromyalgia diagnosis, a person must have 11 or more tender points, but often patients with fibromyalgia will not always be this tender, especially men (see illustration below). 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.
The location of the nine paired tender points that make up the American College of Rheumatology criteria for fibromyalgia.
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.
Only three medications, duloxetine (Cymbalta1), milnacipran (Savella), and pregabalin (Lyrica) are approved by the U.S. Food and Drug Administration (FDA) for the treatment of fibromyalgia. Cymbalta was originally developed for and is still used to treat depression. Savella is similar to a drug used to treat depression, but is FDA approved only for fibromyalgia. Lyrica is a medication developed to treat neuropathic pain (chronic pain caused by damage to the nervous system).
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 for most people 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.
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. These drugs work equally well in fibromyalgia patients with and without depression, because antidepressants elevate the levels of certain chemicals in the brain (including serotonin and norepinephrine) that 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 proven 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). Newer SSRIs such as citalopram (Celexa) or escitalopram (Lexapro) do not seem to work as well for pain as the older SSRIs.
- SSRIs may be prescribed along with a tricyclic antidepressant. 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), duloxetine (Cymbalta), and (Savella). In general, these drugs work better for pain than SSRIs, probably because they also raise norepinephrine, which may play an even greater role in pain transmission than serotonin.
Benzodiazepines
Benzodiazepines can sometimes help 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, a neurological disorder that is more common among people with fibromyalgia. The disorder is characterized by unpleasant sensations in the legs and an uncontrollable urge to move the legs, particularly when at rest, in an effort to relieve these feelings. Doctors usually prescribe benzodiazepines only for people who have not responded to other therapies because of the potential for addiction. Benzodiazepines include clonazepam (Klonopin) and diazepam (Valium).
Other Medications
In addition to the previously described general categories of drugs, doctors may recommend or prescribe others, depending on a person’s specific symptoms or fibromyalgia-related conditions. For example, for people with irritable bowel syndrome (IBS), doctors may suggest fiber supplements or laxatives to relieve constipation or medications such as diphenoxylate/atropine (Lotomil) or loperamide (Imodium) for diarrhea. A prescription medication called alosetron (Lotronex) is approved for the treatment of severe IBS with diarrhea that does not respond to other treatment. Another drug, lubiprostone (Amitiza), is approved for the treatment of IBS with constipation.
Antispasmodic medications may be useful for relieving intestinal spasms and reducing abdominal pain. 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.
Although some of these supplements are being studied for fibromyalgia, there is little, if any, scientific proof yet that they help. FDA does not regulate the sale of dietary supplements, so information about side effects, 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 be comforting to know that fibromyalgia is not a progressive disease. It is never fatal, and it will not cause damage to the 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 brainwave irregularities that interfere with restful sleep. It is important to discuss any sleep problems with your doctor, who can prescribe or recommend treatment for them.
- Exercising. Although pain and fatigue may make exercise and daily activities difficult, it is 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.
- 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.
Tips for Good Sleep
- Keep regular sleep habits. Try to get to bed at the same time and get up at the same time every day—even on weekends and vacations.
- Avoid caffeine and alcohol in the late afternoon and evening. If consumed too close to bedtime, the caffeine in coffee, soft drinks, chocolate, and some medications can keep you from sleeping or sleeping soundly. Even though it can make you feel sleepy, drinking alcohol around bedtime also can disturb sleep.
- Time your exercise. Regular daytime exercise can improve nighttime sleep. But avoid exercising within 3 hours of bedtime, which actually can be stimulating, keeping you awake.
- Avoid daytime naps. Sleeping in the afternoon can interfere with nighttime sleep. If you feel you cannot get by without a nap, set an alarm for 1 hour. When it goes off, get up and start moving.
- Reserve your bed for sleeping. Watching the late news, reading a suspense novel, or working on your laptop in bed can stimulate you, making it hard to sleep.
- Keep your bedroom dark, quiet, and cool.
- Avoid liquids and spicy meals before bed. Heartburn and latenight trips to the bathroom are not conducive to good sleep.
- Wind down before bed. Avoid working right up to bedtime. Do relaxing activities, such as listening to soft music or taking a warm bath, that get you ready to sleep. (A warm bath also may soothe aching muscles.)
Improving Symptoms.
A better understanding of fibromyalgia and the mechanisms involved in chronic pain are enabling researchers to find effective treatments for it. Some of the most promising lines of research in this area include:
- Increasing exercise. Although fibromyalgia is often associated with fatigue that makes exercise difficult, regular exercise has been shown to be one of the most beneficial treatments for the condition. A new NIAMS-supported study is trying to determine whether increasing lifestyle physical activity (that is, adding more exercise such as walking up stairs instead of taking the elevator) throughout the day produces similar benefits to exercise for fibromyalgia, improving symptoms such as pain, fatigue, and tenderness. The study is also examining the potential mechanisms by which lifestyle physical activity might influence symptoms. Other research supported by NIAMS is examining the effectiveness of a 16-week program of a simplified form of Tai Chi on pain and other measures such as sleep quality, fatigue, anxiety, and depression
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