Experts estimate that six million Americans suffer from a mysterious condition called fibromyalgia. They suffer constant pain, especially in trigger points around the neck and upper back. Weakness and fatigue are also common.
Some doctors doubt the very existence of this pain syndrome. There are no blood tests to help with the diagnosis. But increasingly, people with fibromyalgia are found to have an unusual sleep disturbance that prevents them from getting restful sleep.
Studies have shown that healthy people cycle through stages of deep sleep and dreaming (REM or rapid eye movement) sleep throughout the night. Growth hormone, essential for muscle and tissue repair, is released during the deep stages of sleep.
In fibromyalgia, the deep stages of sleep are frequently interrupted. Brain waves typical of relaxed wakefulness (alpha waves) intrude into deep sleep and interfere with the release of growth hormone. Because such patients don’t get restorative sleep, they may wake up even after eight hours in bed feeling fatigued instead of refreshed.
Treatment for fibromyalgia has been challenging. First, many patients have a hard time finding a physician who is familiar with the syndrome. Some doctors react like this one: “This condition is completely psychosomatic. You can’t see it, you can’t test for it. There is nothing tangible. It is not a medically treatable condition but a manifestation of psychological illness.”
But patients who suffer and physicians who treat them disagree. Dr. Daniel Wallace, Clinical Professor of Medicine at UCLA School of Medicine, is author of All About Fibromyalgia: A Guide for Patients and their Families. He recommends gentle exercise, but it has to be approached carefully. Low-impact exercise such as walking on land or in water is done first for a very short time, perhaps five minutes. The duration is gradually increased, until a patient is up to an hour a day and can start increasing the intensity.
Doctors also prescribe antidepressants such as Doxepin or Desyrel, but in doses two or three times lower than those used to relieve depression. Taken at bedtime, these can help people sleep better.
Sleep expert Martin Scharf, Ph.D., recently published the results of his preliminary research on a different kind of medicine (J. Rheumatology, May 2003). He found that Xyrem, which is approved to treat the rare sleep disorder narcolepsy, helped fibromyalgia patients get the deep sleep they need. Treatment with this compound reduced fatigue and pain and improved cognitive function.
Xyrem is very tightly controlled. It is a form of GHB, a natural compound that has been used as a date rape drug. Consequently, access to this medication is limited.
For an up-to-date overview of Xyrem and fibromyalgia treatment, you may want to listen to a one-hour radio interview we recently conducted with fibromyalgia experts, including Drs. Wallace and Scharf. To order this CD, send a check for $15 to Graedons’ People’s Pharmacy (#464); PO Box 52027; Durham, NC 27717-2027.
Fibromyalgia patients deserve to have their pain taken seriously and treated effectively. New understanding and therapies should help.