Fibromyalgia Syndrome (fye-bro-my-AL-ja sin-drome) is most commonly characterized by generalized muscular pain and fatigue. The term "fibromyalgia" means pain (-algia) in the muscles (-my-) and fibrous connective tissues, which are the ligaments and tendons (fibro-). A "syndrome" is a set of signs and symptoms that occur together. Fibromyalgia syndrome is sometimes referred to by the shortened forms fibromyalgia, FM and FMS.
Fibromyalgia is especially confusing and often misunderstood because its symptoms are common in other conditions. It is not a form of arthritis - joint (arthr-) inflammation (-itis) - but rather a form of soft-tissue or muscular rheumatism. In the 1970's and 80's this disorder was called "fibrositis," because it was believed that the symptoms were caused by muscle inflammation; however the name was changed when it was realized in the late 1980's that no inflammation is involved in FMS.
Widespread pain and extreme fatigue are the most prominent symptoms. Sleep disturbances occur in up to 90% of people who have fibromyalgia. Symptoms involving the nervous system involve cognitive and memory impairment, difficulty concentrating, and numbness and tingling in hands, arms, feet, and face. Other common symptoms are irritable bowel syndrome and headaches. Less common symptoms may include irritable bladder syndrome, sensitivity to light and sound, dry itchy skin, sensitivity to changes in temperature, depression, anxiety, and chemical sensitivities. It is important to note that except for pain and fatigue, symptoms vary from one individual to the next. The severity of any particular symptom may also vary from person to person, and even in the same person at different times.
Because the symptoms are so variable, fibromyalgia can be very difficult to diagnose. As a result it is both over- and underdiagnosed: Many people with FMS do not know they have it, and many people who don't have fibromyalgia have been told, or have assumed on their own, that they do.
There are no objective tests, such as laboratory tests or x-rays, that will reveal the presence of fibromyalgia syndrome. There are only two criteria required for a diagnosis of FMS, and both are somewhat subjective:
- Widespread pain - defined as pain in all four quadrants of the body (both sides above and below the waist) - for a minimum of three months.
- Tenderness in at least 11 of 18 predefined points on the body under a specific amount of pressure. (See diagram at http://www.fmnetnews.com/images/3graces.gif.)
Although there are many theories about what causes fibromyalgia syndrome, only a few are based on solid research and no cause has been firmly established. The most promising theory involves a "feedback loop" in the body's stress response system. Because the machinery of the body is very delicately balanced, the amplification of the signals sent by the stress response system cause a variety of things to go out of whack, resulting in the symptoms that together are called fibromyalgia syndrome.
It is believed that a predisposition to fibromyalgia syndrome is inherited. That does not mean the fibromyalgia itself is inherited; only a tendency to develop it if something in the person's life sets it off. Any kind of very severe physical or emotional stress can bring it on in someone who is predisposed - two of the most common triggers are serious injuries caused by automobile accidents and the death of a spouse or child, but someone who has inherited the tendency may develop it following any extremely stressful event. Those who have not inherited the predisposition to FMS do not seem to get it even after very great stress.
Since the underlying cause of fibromyalgia syndrome is not understood, it has not been possible to develop a treatment for the fibromyalgia itself. However, the symptoms can often be relieved to some extent by appropriate treatment.
It is best to consult a specialist, as most family doctors don't know enough about fibromyalgia to treat it properly. Since it is still considered a rheumatological disorder, a rheumatologist is the most likely to have up-to-date knowledge about fibromyalgia. Unfortunately, there are still many doctors who don't believe fibromyalgia exists, so many people with FMS have had to visit a number of doctors before they found one who could - and would - help them.
The best treatment for fibromyalgia is exercise. It seems counterintuitive that exercise would help when movement causes such pain and fatigue, but it is the single most successful treatment. Because it hurts so much, and they feel exhausted all the time, people with FMS tend to rest as much as possible. However, this leads to a vicious circle called "deconditioning" - as individuals do less and less their muscles get tighter and weaker, so they are able to do even less. Some people with FMS have ended up becoming bedridden, not because of the fibromyalgia itself, but because they have become so severely deconditioned. Exercise will loosen and strengthen the muscles, and as individuals become more conditioned, they can do more and more. They do have to start very gently, but if they can walk to the bathroom, they can begin an exercise program. Walking and swimming are the best ways for people with FMS to exercise - they are low-impact, individuals can increase the speed and distance very gradually, and they can stop and rest whenever they need to - but any low-impact form of exercise is useful. Stretching exercises are important for anyone who exercises, but particularly for people with fibromyalgia, whose muscles tend to become shortened and tight from both the disorder itself and from lack of use.
While exercise is essential, rest is also very important. Learning to pace oneself can eliminate the cycle so many FMS patients fall into of doing too much when they have a good day and then feeling terrible for several days as a result. A 10- or 15-minute rest several times a day can make an enormous difference in how an individual feels and actually allow them to do more than they would if they pushed too hard.
Medication to treat the symptoms can be an important part of improving the lives of people with fibromyalgia. Over-the-counter pain relievers such as ibuprofen and Tylenol can be tried, although in most cases they are not strong enough; prescription-strength non-steroidal anti-inflammatory drugs (NSAIDs) may ease pain for some people. Antidepressants - especially the tricyclics, such as Elavil - have proven very useful in treating a variety of chronic pain conditions. Ultram, a "weak narcotic" pain reliever, has proven to be a wonder drug for many people with FMS, as it not only relieves moderate pain without causing drowsiness, but gives many people an energy boost, which helps combat fatigue as well as pain.
For those with severe pain, narcotic drugs, such as Vicodin or Percocet, may be necessary; in rare cases morphine has been prescribed for intractible fibromyalgia pain. Many well-designed studies have shown that appropriate doses of narcotics taken as directed for chronic pain do not lead to addiction.
Another class of drug that has been used very successfully for certain types of chronic pain are anti-seizure medications. Neurontin has been very helpful for a number of people with FMS. A newer version of this drug, called pregabalin, has been tested for fibromyalgia pain relief and has worked quite well for many people in the study; the manufacturer hopes to receive FDA approval to release pregabalin this year.
Since poor quality sleep is characteristic of fibromyalgia, many people have been helped by such sleep medications as Ambien and Sonata. These are non-narcotic drugs with few undesirable side effects, and are so short-acting that hangover sleepiness the next day is not a problem for most people.
Physical therapy has helped many people with FMS. A physical therapist can teach patients how to exercise and stretch safely and effectively, and can use a number of other modalities to help relieve the pain.
The National Institutes of Health has stated that acupuncture has been found in studies to be helpful for fibromyalgia as well as a number of other conditions, especially ones that cause pain. There are various types of acupunture. Doctors who receive a few weekends of training or take a correspondence course can perform medical acupuncture; this type tends to focus on relieving whatever symptoms the patient is experiencing. Acupuncturists who perform traditional acupuncture (also called Chinese acupuncture) concentrate on restoring health to the whole body, relieving the symptoms in the process. Traditional acupuncturists must take several years of classes and supervised clinical practice.
Massage can be very helpful to relax tight, painful muscles. At first it just feels good for a few hours, but when repeated once or twice a week for several weeks, it can begin to relieve pain on a long-term basis.
Daily meditation can reduce both pain and depression by relaxing the body and mind. Any type of meditation will work equally well: guided meditation, mindfulness meditation, TM, repetitive prayer, or whatever kind the patient is most comfortable with. People inexperienced with meditation usually find it easier to follow a tape; meditation tapes can be purchased online or at a variety of retail stores.
Depression can accompany fibromyalgia either as a direct symptom or as a result of feeling terrible all the time. In either case, emotional therapy can help individuals learn to live and enjoy life, even with a chronic disease. Cognitive behavioral therapy has been found in many studies to be the most useful for people with fibromyalgia, but if this is not available, any good mental health practitioner can help.
The prognosis for most people with fibromyalgia syndrome is excellent. It is not life-threatening, and it does not continue to get worse and worse. It may take quite a bit of experimenting to find the right medications, as it differs for each individual, but with a cooperative doctor patients can try a variety of drugs and see which one helps the most. With the right medication and a good exercise program, most people with FMS will do quite well. Adding to this one or more of the alternative treatments has enabled many people with fibromyalgia to live a full and happy life.