At one time or another, you may have aches and pains that come and go. They may be caused by a case of the flu, from overusing a muscle, or from sitting in a poor position while watching TV. You may sometimes wake up in the morning feeling stiff and wonder if you've slept in an awkward position.
There's nothing unusual about these examples of pain. But when pain, stiffness and aching occur constantly, it's time to see your doctor and find out what could be causing such discomfort. It may be that you have fibromyalgia (fye-bro-my-AL-geeah), also referred to as the fibromyalgia syndrome or fibrositis (fye-bro-SIGH-tis).
If you have fibromyalgia, learn all you can about it, because the more you know, the easier it will be to keep your condition under control. This booklet was written to give you information about the possible causes, symptoms and treatment of fibromyalgia. We encourage you to discuss any questions or concerns you have with your doctor.
WHAT IS FIBROMYALGIA?
Fibromyalgia is a form of rheumatic disease. Like many other forms of rheumatic diseases, fibromyalgia is a chronic syndrome of pain that can come and go. It can affect a person's work habits and lifestyle.
Many of the 100 or so kinds of rheumatic diseases are characterized by arthritis which causes pain and swelling in the joints. With fibromyalga, the pain is in the ligaments, tendons and muscles. This can affect the way your joints function, and that's why you might think that fibromyalgia is in your joints.
However, fibromyalgia is not a form of arthritis. You need not worry about fibromyalgia causing deformities or permanent crippling.
Doctors originally thought that fibromyalgia was due to inflammation of the connective tissue within muscles. We now know that this is untrue, yet the term fibrositis (fibros = connective tissue; itis = inflammation) is still used. Terms such as fibromyalgia, fibromyosius and muscular rheumatism are also used to describe the same condition. This has caused some confusion among doctors who may not be familiar with the most recent research findings.
For ease of reading, we have used the term fibromyalgia throughout this booklet.
WHO GETS FIBROMYALGIA?
Doctors are finding that fibromyalgia is a very common ailment. There are currently millions of Americans who have been diagnosed with it. Although anyone can get fibromyalgia, many more women have fibromyalgia than men -- and most are between the ages of 20 and 50.
There is also increasing evidence that fibromyalgia can start in the teenage years. Some teenagers have symptoms just as severe as their middle-aged counterparts, while many people experience only occasional symptoms in their younger years that become more troublesome in later years.
WHAT CAUSES FIBROMYALGIA?
Although medical researchers and doctors don't know the exact causes of fibromyalgia, they have recognized a number of different conditions that are associated with it. These conditions are described in the following paragraphs.
Physically Unfit Muscles
There is increasing evidence that people with fibromyalgia have unfit or poorly developed muscles. (It is not yet known whether unfit muscles are the cause or the result of fibromyalgia.) Nonetheless, this theory does provide an important clue about treatment, because people who are able to engage in a regular exercise program usually have the most improvement in their symptoms.
The reason why exercise is so beneficial lies in the fact that your muscles are remarkable in their ability to adapt to specific training programs. On the other hand, under-use of your muscles leads to a "negative, detraining" effect, which results in unfit muscles. "Detrained" or unfit muscles are more likely to become injured or damaged from exercise. This sort of muscle damage is commonly called "microtrauma."
All of us have probably experienced the effects of muscle micro-trauma after exercising too vigorously. When microtrauma occurs, you experience delayed muscle pain that may not appear until 24-48 hours after exercising, and may last 6-7 days. In addition to the pain, increased fatigue occurs, resulting in a lack of desire to participate in further physical activity until energy has been restored.
It is common for anyone to experience the effects of micro-trauma after too vigorous physical activity. Yet for people who have unfit muscles, these problems may develop after only slight exertion, such as routine day-to-day activities. Micro-trauma may also result from overuse, or abuse, of certain muscles -- such as poor posture or damage caused by a blow or fall.
Another interesting clue as to the cause of fibromyalgia comes from sleep laboratory studies. Tests of people with fibromyalgia often show a sleep disorder in which the deepest or most restful stage of sleep (stage IV) is disturbed or interrupted. Doctors refer to this disturbance as "alpha intrusion of stage IV sleep."
Sleep disturbances may be responsible, in part, for the low energy levels experienced by people with fibromyalgia. There is also evidence that continued sleep problems can lead to muscle pain. This combination of pain and fatigue often limits physical activity and endurance. The resulting lack of physical exercise can contribute to the overall symptoms of fibromyalgia. Current research indicates that stage IV sleep is also important in repairing tissue damage and feeling psychologically rested after sleep. As you can see, when this stage of sleep is reduced, it can contribute to other symptoms of fibromyalgia.
In fact, the inability to get a good night's sleep is considered by some to be a major factor contributing to the symptoms of fibromyalgia. In one study, volunteers who did not have fibromyalgia, were subjected to artificial disturbance of their stage IV sleep. They developed pain and soreness in their muscles which were very similar to those of fibromyalgia.
Although pain itself and the psychological stress it may cause seem to be the most common causes of sleep disturbances in people with fibromyalgia, alcohol, caffeine and nicotine can also contribute to sleep disturbances. (See figure 1.
It was originally thought that the symptoms of fibromyalgia were caused by stress and worry, which caused additional muscle tension. Although recent studies of people with fibromyalgia do not prove that stress itself causes fibromyalgia, stress, anxiety and fatigue can make your condition worse. In fact, the pain and fatigue of fibromyalgia often cause stress and anxiety, which in turn can increase the pain and fatigue, thus creating a vicious cycle.
WHAT ARE THE SYMPTOMS OF FIBROMYALGIA?
Since fibromyalgia is not completely understood and symptoms often seem vague, it is sometimes difficult to describe symptoms to your friends and relatives. Even your doctor may have some initial difficulty getting a useful history. All people with fibromyalgia have two major problems: pain and fatigue.
The major symptom of fibromyalgia is pain. Most people feel the pain of fibromyalma as aching, stiffness and tenderness around joints, muscles, tendons and ligaments. Pain may appear in one or more locations at the same time and also in many different parts of your body.
The pain is located within the muscles themselves, as well as at the points where ligaments attach muscles to bones. For reasons that are still unknown, if you have fibromyalgia, you will feel extreme tenderness over many of these locations. These sites of tenderness are called tender points (sometimes referred to as trigger points). The location of tender points is similar in all people with fibromyalgia and are, therefore, an important part of the diagnosis (see figure 2).
Sometimes, you'll notice that the symptoms of fibromyalgia are worse when you first wake up. But in most cases, the discomfort increases as the day goes on. The type of activities you do may be a factor. For example, if you sit slumped over a desk all day long, by the end of the day the pain may have gotten worse because of bad posture.
Fatigue is sometimes the most debilitating aspect of fibromyalgia. Some people experience fatigue as a lack of muscle endurance, while others describe the fatigue as an overall sense of lack of energy. Much of the fatigue is thought to result from a lack of restful sleep.
You may find it helpful to schedule a rest period during your day, if possible. A nap or time spent relaxing in bed may help you to face your activities more efficiently.
There's been much recent interest in the "chronic fatigue syndrome." This was once thought to be due to a persistent infection with the Epstein-Barr virus (the cause of infectious mononucleosis). This theory, however, has now been disproven and many people who had previously been diagnosed as having "chronic fatigue syndrome" are now known to have fibromyalgia.
Many people with fibromyalgia have other problems which often cause some confusion to their doctors. These include: Raynaud's Phenomenon (poor circulation to the hands or toes), tension headaches, migraine headaches, dizziness, tingling and numbness, an irritable bowel abdominal bloating with alternating diarrhea and constipation), muscle tremors, bladder spasms and blurred vision. While most instances of fibromyalgia-related blurred vision cause no permanent damage to eyesight, an ophthalmologist should be consulted if this symptom occurs.
HOW IS FIBROMYALGIA DIAGNOSED?
There are no specific lab tests or x-rays that can detect fibromyalgia, at this time. Your doctor will base the diagnosis on your medical history, the identification of tender points, and the absence of other diseases. Describing the type of pain you feel and where it is located, as clearly as you can, may help your doctor diagnose the problem.
HOW IS FIBROMYALGIA TREATED?
There is presently no cure for fibromyalgia in the sense that your doctor could prescribe a medication or other type of treatment that will make your symptoms disappear forever. However, the symptoms of fibromyalgia can be controlled and you should be able to maintain a productive lifestyle with only minor limitations.
Your doctor will discuss a combination of treatments that can help you:
* Improve your sleep
* Increase your physical fitness
* Ease your pain and fatigue
Improving the quality of your sleep will be a major part of your treatment plan. Certain medications such as amitriptyline (Elavil), cyclobenzaprine (Flexeril) and doxepin (Sinequan) are generally prescribed to promote stage IV sleep (the most restful stage of sleep). These medications are not sleeping pills. They are anti-depressants, and anti-depressants in low dose may help facilitate sleep and diminish chronic pain.
In fact, sleeping pills may make fibromyalgia worse by lowering the quality of sleep. If you are currently taking sleeping pills, tranquilizers or narcotic analgesics (such as Dalmane, Darvon, Valium or codeine), discuss discontinuing these medications with your doctor.
Improving sleep with medications so that you awaken feeling "refreshed," instead of tired, is just one part of your complete treatment plan. As shown in figure 1, there are many conditions that are commonly associated with a sleep disturbance, and it is important to control those factors. If you haven't already done so, it may help to limit or entirely omit caffeine, alcohol and nicotine from your diet, since these have been proven to lower the quality of your sleep.
Recent studies have shown that people can get a sustained benefit by participating in an aerobic exercise program. Aerobic exercise involves some form of activity that causes your pulse rate to increase and remain increased over an extended period of time. Usually 20 -- 30 minutes of aerobic exercise is recommended.
Most people with fibromyalgia are reluctant to exercise because it initially causes more pain. But if your doctor or therapist works out an exercise program that starts out slowly and gradually becomes more challenging, the risk of muscle micro- trauma will be significantly reduced, and your body will eventually be able to accept more vigorous exercise routines.
Low or non-impact aerobic exercises are generally recommended. These include brisk walking, swimming and the use of an exercycle. Exercises such as jogging, aerobic dancing, weight training and racquet sports should be avoided until you have reached a good overall level of physical fitness.
Remember to gently stretch all your major muscle groups for about five minutes -- both before and after -- you exercise.
Stretching helps reduce the chance of muscle injury. Consult your doctor before any aerobic activities, and ask for a referral to a physical therapist who can teach you appropriate stretching exercises and help you get started on a non-impact exercise program. Start your exercise program gradually. Then build up your routine as your body can tolerate more exercise.
Changing Your Work Or Home Environment
Changing certain habits or physical arrangements in your daily routine may make a difference too. For example, pain in your arms, neck or shoulders can be brought on by long hours of typing or entering data into a computer. If so, you may be able to relieve pain just by raising the height of your typewriter or computer table. A more comfortable mattress may help relieve aching muscles and reduce morning stiffness. If driving in heavy traffic causes your muscles to tighten, try using a backrest or try changing the way you sit in the car.
Dealing With Emotional Factors
Emotional factors may also affect your symptoms. Feelings are sometimes harder to pin down and understand than your physical symptoms, yet they may contribute to your symptoms.
It is important that your doctor be aware of the special stresses in your life. He may want you to undergo some standard psychological tests which will give your doctor more information about the ways you cope with stress. Do not be offended by this suggestion; everyone has stresses -- including your doctor -- and everyone reacts to stress in different ways.
If you are experiencing troublesome situations or feelings, both of which can make fibromyalgia worse by disturbing your sleep, you may benefit from psychological counseling to help you cope more effectively. Counseling sessions for the entire family can also be beneficial. They can help family members deal more effectively with stress and better understand each other's feelings. Some people have a mild depression that is contributing to their symptoms. Sometimes, specific medications are needed to alleviate this type of depression.
Since stress and tension can contribute to your symptoms, it would be helpful for you to learn one or two relaxation techniques. Almost anyone can benefit from practicing relaxation techniques such as visual imagery, progressive muscle relaxation, biofeedback, yoga or meditation. Ask your doctor or physical therapist about relaxation techniques that might work for you, or take a stress management class. Most of all, recognize that help with the emotional aspects of your life may be a very important part of your treatment program.
The medications used to treat pain and inflammation for most other rheumatic diseases are not of great help in fibromyalgia. Aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen, do little to reduce pain. Even more powerful drugs, such as corticosteroids, do not seem to help the pain, stiffness and fatigue of fibromyalgia.
Some short-term relief from your symptoms may be obtained by taking a hot bath, or by using hot packs or other forms of heat. In general, however, physical therapy is not indicated in the long term management of fibromyalgia.
Taking An Active Part
In order for any of these treatments to be effective, you must take an active part. This includes becoming knowledgeable about fibromyalgia. With the growing awareness of the symptoms and diagnosis of fibromyalgia, many communities now have educational lectures given by doctors, as well as self-help groups. It may be well worth your time and effort to find a doctor who is knowledgeable about fibromyalgia, and to choose a doctor with whom you feel comfortable. Since all people respond differently to various treatments, what works for another person may or may not work for you. Therefore, it may take time and a trial of the different kinds of treatment suggested in this booklet, before an effective combination can be worked out. Even though you may have to modify some aspects of your lifestyle, deal with flare-ups from time to time, or add a few activities to your daily routine such as ways to relax and exercise; you, like most people with fibromyalgia, should be able to continue your normal activities.
With active involvement on your part, fibromyalgia can be controlled. Coping efficiently with stress, maintaining a good level of physical fitness, and improving the quality of your sleep are the key ingredients to success.
Fibromyalgia syndrome is now the subject of carefully controlled research studies in many of the leading universities of North America. The leading question facing investigators is whether fibromyalgia represents a "true" disease process, or represents one drastic extreme of the normal spectrum of the aches, pains and fatigue that everyone experiences on occasion.
The answer to this question will have a major bearing as to whether fibromyalgia can be controlled with novel drugs, or whether the currently prescribed treatments of stress reduction, improved quality of sleep, and maintenance of physical fitness will remain the best strategies for coping with this condition.
THE ARTHRITIS FOUNDATION
The Arthritis Foundation is the source of help and hope for an estimated 37 million Americans who have arthritis. The Foundation supports research to find the cure for and prevention of arthritis -- and seeks to improve the quality of life for those affected by arthritis.
Formed in 1948, the Arthritis Foundation is the only national, voluntary health organization that works for all people affected by any of the more than 100 forms of arthritis or related diseases. Volunteers in chapters nationwide help to support research, professional and community education programs, services for people with arthritis, government advocacy and fundraising activities.
Two specialized groups exist within the Foundation. The Arthritis Health Professions Association (AHPA) is composed of physical and occupational therapists, nurses, social workers, physicians and other health professionals interested in the treatment of arthritis. The American juvenile Arthritis Organization (AJAO) is composed of children, parents, teachers and others concerned specifically about juvenile arthritis.
As a not-for-profit organization, the Arthritis Foundation relies on public contributions to fund research and provide service programs. You can become a member of the Arthritis Foundation and help support research and the fight against arthritis. Please contact your local chapter or complete and mail the following membership form. You will receive materials about the benefits of Arthritis Foundation membership, including the bimonthly magazine Arthritis Today.
OTHER HELPFUL BOOKLETS FROM THE ARTHRITIS FOUNDATION
The Arthritis Foundation offers many other booklets on the various types of rheumatic diseases and also on self-care. Other booklets related to fibromyalgia are listed below. If you would like to receive any of these booklets, contact your local chapter of the Arthritis Foundation or write to the address listed on the back page of this booklet.
* Coping with Pain #9333 * Coping with Stress #9326 * Taking Care (tips for saving energy) #9329 * Exercise and your Arthritis #9704 * The Family -- Making the Difference #9334 * Taking Charge (managing the emotional aspects of living with arthritis) #4221