Fibromyalgia

Fibromyalgia (FM) – a condition of widespread pain, poor sleep, fatigue and sometimes other symptoms - has been a special interest of mine for almost twenty years. Despite a large amount of research over that period, this condition remains very mysterious. It is also controversial: while most experts regard it is a medical disorder of the nervous system, some believe it is a "non-disease" that is best explained in psychological terms. Sadly, many FM sufferers have felt demeaned and written off as crazy, by hearing this theory from a less-than-sympathetic doctor.

At present, most experts believe that FM is essentially a disorder of the nervous system in which pain is amplified, so that previously-painless sensations now hurt. So it is a "pain amplification disorder," which is one kind of "afferent processing disorder." These terms are well known to pain researchers, but sadly, the great majority of practicing doctors have never heard of them. Too often, they assume that in pain amplification states, the patient is consciously exaggerating the pain. But in fact, these are disorders in which the pain signals are turned up before they ever reach consciousness.

This kind of "pain amplification" can be so severe that there can be pain even without any outside stimulus at all: "spontaneous pain." If such a disorder affects mainly pain from muscles, then it is the muscles that hurt, and the sufferer’s ability to move and exercise will be limited because such activities will hurt, even though they shouldn’t. If the condition affects pain from the skin, then even pressure from a firm chair, or from heavy clothing, may be genuinely painful. And if it affects pain from the stomach and intestines, there may be cramping in the abdomen, and discomfort after eating. If it affects the bladder, then the sufferer may feel she has a full bladder and have to make numerous trips to the bathroom. With each of these problems, lab tests and x-rays are negative, because none of them detects "pain amplification." Sometimes, the result of this is that patients get treated for a while for some other condition, but then when tests keep coming back negative, the doctor concludes there’s no problem after all and "it’s all in your mind."

This kind of mistake happens because doctors were not taught about pain amplification during their training. Pain amplification is a process that takes place within the nervous system (the nerves, spinal cord and brain). It involves chemical changes, and also disturbances in the electrical circuits that transmit information about pain and other feelings around the brain and the body. Since the brain is the organ of the mind, pain amplification is also profoundly affected by mental and emotional factors.

It seems that the parts of the brain that control pain sensitivity also control sleep, energy, mental acuity, and mood. So a pain amplification disorder can be accompanied by disorders in these four areas as well. Hence in FM, most sufferers complain that they never feel properly refreshed after sleep. They also usually report that activities that didn’t previously make them tired, now make them thoroughly exhausted, sometimes so much so that they have to take a day or two in bed to recuperate. Sometimes they feel they can’t think properly, or remember well. And they often notice that they are not as emotionally stable as in the past.

The cause of FM is unknown. It is much more common in adult women, but some cases occur at all ages and in both sexes. Sometimes fibromyalgia seems to develop by a spreading-out of pain from a single injured area – perhaps out of neck pain after an auto accident, or low back pain after a strain at work. Sometimes it represents a complication of another illness such as arthritis. Sometimes it follows a viral illness like flu. And often, it just comes on very gradually with no obvious cause. Sometimes it clearly runs in families. So probably there are several different factors, any of which can contribute to the phenomenon of pain amplification (of which fibromyalgia is the commonest type). Once the pain amplification is happening, then a number of other factors may conspire to keep it going: these include sleep loss, emotional stress, overwork, and any physical injuries.

There is at present no known cure for fibromyalgia. Treatment can therefore only aim at reducing its symptoms. These include pain, poor sleep, difficulties with concentration and memory, and exhaustion. Depression is common in FM, as in any condition causing chronic pain, so this often also has to be treated. But this does not mean that fibromyalgia is just a manifestation of depression: people with both deserve to have each condition addressed and dealt with on its own merits.

Symptomatic treatments for FM are notoriously variable in their effects: something that helps one person considerably may be useless for another. Various treatments from medications, to nutritional supplements, to acupuncture, to psychotherapy, and others, help some people with fibromyalgia. Probably the only thing that helps everyone is exercise: too much or too little makes the condition worse, but just the right amount seems to benefit anyone with fibromyalgia.

In our experience, most people with fibromyalgia can get at least some worthwhile improvement with straightforward, well-known remedies, and a few people can get very much better indeed. The challenge is to try a number of treatments as quickly and critically as possible, so as to find out for sure what helps and what doesn’t. Treatments such as medications, or massage, or acupuncture, don’t need to be persisted in for week after week: if they work, they work very quickly and can usually be assessed in only a few days.

Many web sites deal with fibromyalgia. Unfortunately, some of these are ill-informed, and many are simply advertisements disguised as medical information. Two reputable sources that are reliable, and which we strongly recommend, are the Fibromyalgia Network at www.fmnetnews.com, and the Oregon Fibromyalgia Foundation at www.myalgia.com. The Fibromyalgia Network also puts out a number of extremely useful publications, including a newsletter that is the most useful thing we know for keeping up to date with what helps people with FM.

As for books, there are now a number on the market dealing with fibromyalgia. Like the web sites, they vary from wonderfully-helpful to just-plain-silly, so beware. A good starting-place for most people is Dan Goldenberg’s book entitled simply "Fibromyalgia" which has several advantages. It is written by a nationally-respected researcher in the field; the author also has a family member with fibromyalgia so he knows his subject from a personal as well as a professional standpoint; and it has good references, for those who want to study the research for themselves. Another excellent book is “All About Fibromyalgia” by Daniel and Janice Wallace. Starting with a book like this is the best way to arm yourself against being taken in by the "just plain silly" variety.

Alan Spanos, MD, MA