The restless and the weary

Restless legs syndrome is a medical mystery

People with restless legs syndrome are easy to spot. On long flights, they pace the aisles and pound their thighs with their fists. In meetings, many jiggle a leg up and down. And in the mornings, they often still look drawn and weary long after their first cup of coffee should have taken effect.

Little known but affecting up to 15 percent of the population, restless legs syndrome remains something of a medical oddity. While resting or asleep, sufferers develop an uncomfortable tingling in their arms and legs that is relieved only by movement. The sensations can appear at any time of day, but most often drive people from their beds at night. The syndrome can leave people dangerously sleep-deprived and depressed.

The syndrome’s origins remain a mystery. It can run in families, suggesting a genetic component. Pregnancy and iron deficiency can cause temporary cases. However, “for the majority of patients, there is no readily identifiable cause,” says Dr. Richard Kanak, a private practice pulmonologist who is currently medical director of Community Hospital’s Sleep Disorders Center.

While no sure-fire cure exists, relief is available. Drugs approved for Parkinson’s disease have proved particularly effective, as have some sedatives, pain relievers, and anticonvulsants. Yet people suffering from the syndrome often aren’t diagnosed for years.

To raise awareness about the disease, a restless legs syndrome support group has been meeting at Community Hospital’s Hartnell Professional Center in downtown Monterey. The quarterly meetings feature a talk by a pharmacist, physician, or other expert on the syndrome and its therapies, followed by a chance for participants to share their experiences and tips for coping with the disease.

The meetings have been a revelation to more than a few sufferers. Says support group cofounder Peter Brooks, “When somebody comes to that first meeting who doesn’t understand what they’re suffering from, and they hear that what they have is not just in their head but has a name, is a recognized medical disorder, they’re not alone … When they find that out, I have seen people on numerous occasions start crying because they realize something can be done.”

Peter Brooks

The early 1990s were sleepless years for Peter Brooks. By day, the 47-year-old Wall Street investment banker was riding the economic boom. By night, he suddenly found himself unable to fall asleep.

After sleeping for an hour or so, Brooks would awaken with odd sensations in his legs. “It was very unpleasant. I felt like there were worms crawling under my skin,” Brooks says. The feelings eased if he got up and walked around, and he assumed the problem would eventually disappear. Instead, the urges to move grew more insistent and severe. “It got to the point where it was really difficult for me to sleep. I would lie down, and after 30 seconds would have to get up and move around.”

Exhausted and worried, Brooks turned to his doctor. Within the year, a neurologist gave Brooks a name for his sensations: restless legs syndrome. A phenomenon that affects millions, the syndrome is marked by recurrent urges to move the legs or arms that are relieved only by getting up and moving around.

Yet the diagnosis did not automatically lead to a solution for Brooks. The syndrome has no known cause, and no drugs are approved for its treatment. “I went through a several-year period of just trying to get through each day,” Brooks says. Deprived of sleep and unable to sit still to read or travel on an airplane, he eventually took early retirement.

A long search led Brooks to a sleep center doctor knowledgeable about the syndrome. The doctor’s willingness to work with Brooks to find an effective treatment resulted in the medicinal cocktail that Brooks takes today. “When I started getting relief, I felt like it had given me a second shot at life,” he says.

Thanks to the medication, the now-59-year-old Pebble Beach resident says, “I can lead a productive life.” He paints, plays rock music, and volunteers for Chartwell School in Seaside. Brooks also does all he can to raise awareness about the syndrome: He is head of development activities for the Restless Legs Syndrome Foundation, a national organization based in Rochester, Minnesota, and he helped start a local support group for local syndrome sufferers in 2002. Perhaps best of all, he can finally get a good night’s rest.