Coping With 'Restless Legs'

by Sandy Rovner

c 1996 The Washington Post Reprinted with permission

They call themselves "the night walkers." Just as Hans Christian Andersen's ballerina was driven by the red shoes to dance her life away, so the estimated 12 million Americans with restless leg syndrome (RLS) are driven by an often indescribable feeling in their legs that compels them to get up and walk, especially at night.

They don't have to walk far to get rid of the feeling, but they often must do it over and over. Because of this, people with restless leg syndrome are among the most sleep-deprived of the notoriously sleep-deprived American population, experts say.

People with restless leg syndrome have trouble explaining the sensation in their legs. Some describe it as "ants in the pants," some as "a feeling that worms are crawling up and down your legs." Because the symptoms are so vague and because the condition is so little known in the medical community, it can be extremely difficult to diagnose, according to Richard P. Allen of the Johns Hopkins Sleep Disorders Center in Baltimore.

Starla Phelps, who heads a support group for patients in Northern Virginia, has had restless leg syndrome since she was a child. Now in her forties, Phelps recalls that when she went to the movies as a teenager her date would be sitting watching the film and she would be pacing around the lobby. A few years ago, just before Christmas, Phelps said she went through an entire week during which she had a total of eight hours of sleep and "I really was thinking about suicide." She didn't know what was causing her problems, and neurologists she'd seen were no help. But one day she went to an ear, nose and throat specialist for her sinuses and in the course of telling him about her symptoms she mentioned her sleep problems. He was familiar with restless leg syndrome and "knew right away what I had," she said.

After coming to understand the condition, she said she realized that one of her aunts may have been bothered by it too. The elder woman was always viewed by the family as eccentric because of her abrupt manner in walking away from conversations and her insistence on riding in the backseat of a car so that she could move her legs. People who don't understand restless leg syndrome, Phelps asserted, can't imagine the problems it causes. It has "ruined lives, caused divorces and wreaked havoc in people's personal lives," she said.

Yet, even if the condition is correctly diagnosed, it can be difficult to treat. Only in the past five years have sleep and neurology researchers determined that restless leg syndrome is caused by an abnormality in the brain related to a low level of the chemical dopamine, which is a neurotransmitter, according to studies. Researchers already knew that a lack of that same chemical was responsible for Parkinson's disease, and doctors have begun treating restless leg patients with drugs that are used with Parkinson's patients. However, the syndrome doesn't appear to be related to Parkinson's disease.

Initially, patients were given small doses of L-dopa or Sinemet, but these drugs had the potential to cause the symptoms to return worse, during the day as well as night, sometimes affecting the arms and other parts of the body, said Allen. Opiates, tranquilizers, the blood pressure drug clonidine and other drugs that enhance the body's use of dopamine with fewer side effects than the earlier medications, according to studies.

Research has shown that the syndrome is often familial and is linked to the body's circadian sleep-wake cycles worsening in the afternoon and evening and disappearing after about 3 a.m. It gets worse when the individual is sitting down or lying in bed. It can affect children as well as adults but seems to worsen with age. Men and women are equally affected, but it is rarely seen in the African American community, Allen said. The sensation disappears only when the individual walks around and sometimes rubs the affected limbs, but it recurs within a few minutes and the person must get up and walk again.

Children with restless leg syndrome are commonly diagnosed with attention deficit disorder and often put on the drug Ritalin, which may quiet them down but masks the restless leg symptoms, according to a 1992 paper published in the journal Sleep Research. A 1994 paper published in Pediatric Neurology also noted that restless leg syndrome is sometimes dismissed in children as "growing pains."

Richard Levin, the organizer of a Montgomery County support group for patients and a retired pathologist, suffered with restless leg for about 20 years. But after a heart bypass operation several years ago, the symptoms grew worse. His doctors couldn't explain his problems, so he began a search of the medical literature himself and found a reference to restless leg syndrome. Because he thought it might apply to him, he sought an evaluation from experts on sleep disorders at Georgetown.

But after being hooked up to the machines that measure the stages of sleep, electric muscular activity during sleep, skin temperature, heart rate, blood pressure and eye movement, among other things, his legs started to become restless and he needed to get up and walk. "No, you can't do that," he recalled the attendants telling him. "So I told them 'It's either that or I go home right now.' " They let him walk, diagnosed his restless leg syndrome and gave him medication. The drugs initially provided relief, but after a couple of years, the symptoms recurred, worse than ever. He switched drugs, but now is again showing signs of a delayed rebound, he said.

For many patients, the trick is to find non-pharmaceutical coping solutions while sitting at a desk, riding in a car for long distances or sitting through movies. Pickett Guthrie, a North Carolina woman who set up a national foundation for restless leg syndrome patients, for example, rigged up a stationary bicycle in a van so she can cycle while her husband drives. Starla Phelps has a smaller set of pedals to work in the car while she is riding or watching TV. "It's better than 'eye of newt and two acorns,' " Levin said wryly.