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Restless legs syndrome keeps millions awake at night

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64-year old Martin Atkins calls himself a "nightwalker," since he spends most late nights pacing his building's basement in Roosevelt Island, New York, to avoid a Restless Leg Syndrome attack. (Cassandra Vinograd/CNS)

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Martin Atkins, a New York native who has suffered from RLS since he was a child, resorts to late night walks around Roosevelt Island to avoid RLS attacks. (Cassandra Vinograd/CNS)

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When RLS keeps him awake, Martin Atkins takes late night walks around Roosevelt Island before heading home and dosing up on pain medication to fall asleep. (Cassandra Vinograd/CNS)

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64-year old Martin Atkins calls himself a "nightwalker," since he spends most late nights pacing his building's basement in Roosevelt Island, New York, to avoid a Restless Leg Syndrome attack. (Cassandra Vinograd/CNS)

Eighty-year-old Charlotte Sherman is jolted out of bed. She screams as she drops onto the floor. It’s her “electric shock torture” again: The nerve in Sherman’s leg is burning from her knee to her groin. Unable to stand, she kneels on the floor at her bedside, crying hysterically.

Hundreds of miles away, Jill Gunzel is tossing and turning in bed. She had tried drinking tea, distracting herself with e-mail messages and reading the newspaper, but nothing had worked. Gunzel, a 54-year-old Arizona native, closes her eyes and imagines herself dancing. Following each step in her mind, she is jumping, tapping and sliding her way to sleep.

Every evening, as the day winds down, millions of Americans get a strange urge: to walk, to move, to wriggle. While the rest of the country sleeps, they dance in their beds.

These people are plagued by restless legs syndrome, or R.L.S., a neurological disorder that strikes when they are most exhausted. While they struggle to rest, they experience pain in their legs that can be relieved only by movement. Although not fatal, the condition can be devastating. But R.L.S. sufferers are taking heart from recently developed treatments and new efforts to legitimize the syndrome.

Five percent to 10 percent of Americans are believed to have R.L.S., according to a 2003 report in the Journal of Sleep Medicine. Most are women. Northern Europeans, particularly Scandinavians, are at the highest risk for the disorder.

People who suffer R.L.S. experience a range of symptoms. For some, the problem occurs only at night and only in the legs. Others get sensations in their arms or ankles, and some experience discomfort during the day. Some seek relief by concentrating on a distraction. Most need to get up and move.

“R.L.S. is probably more than one disease,” said Dr. Sudhansu Chokroverty, a neurology professor at the New Jersey Neuroscience Institute at JFK-Seton Hall University, who has been studying the disorder for more than 40 years. People with the syndrome have difficulty riding in planes or cars, going to the movies or even just reading a book.

At least 3 percent of cases are severe. Sherman, a New Yorker, wouldn’t dream of going to dinner after 7:30 at night. A stockbroker quit his job because he couldn’t sit still. And one couple decided not to have any more children because the wife’s pregnancy-induced R.L.S. had been so agonizing.

The National Institutes of Health has identified the common features of R.L.S.: an urge to move or an unpleasant sensation in the legs that gets worse while they rest at night and is relieved by movement.

But doctors often misdiagnose the condition. “I tried everything--massage therapists, acupuncturists, vascular surgeons, sleep studies,” Sherman said. One physician operated on her leg, while another told her to seek psychiatric help.

Like Sherman, less than a quarter of patients are correctly diagnosed, according to a 2004 study. Doctors often mistake R.L.S. for depression, stress, chronic fatigue, cramps or attention deficit disorder, Chokroverty said. Their diagnoses depend on the patients' complaints, which can vary widely--from “itching bones” to “Coca-Cola bubbling in their nerves” to “dancing legs.”

Doctors didn't recognize Martin Atkins's severe R.L.S. until he was in his 50s. Atkins, who lives on Roosevelt Island in New York City, says his symptoms have grown worse over the years. These days, Atkins, 64, spends the wee hours of the morning cooking sweet potato pies, writing poetry and walking laps around his basement to relieve his symptoms.

Researchers believe R.L.S. is hereditary in as many as half of all cases. Sherman can attest to that: Her mother and seven siblings all had it, as do many of her nephews. When one nephew's wife complained that sleeping with him was “like sleeping with Fred Astaire,” Sherman immediately realized that he had inherited the syndrome.

Gunzel’s family had more trouble coming to a diagnosis. “My son would tell me, ‘I’m not sleeping at night,’” Gunzel said. “My dad would make bacon at two in the morning, my grandmother would get up and be in the bathtub all night--but we never put it together because we didn’t describe it the same way.”

Scientists are now looking for an R.L.S. gene, and are expected to identify it within a year, said Georgi Bell, executive director of the RLS Foundation (rls.org). Locating the gene would provide the only sure-fire way to diagnose the disorder.

“For the people who have it, identifying a gene brings huge legitimacy to the disorder,” said Dr. David Rye, director of Emory University’s sleep medicine program. Scientists are also looking into a connection between R.L.S. and low iron levels in the brain.

Both lines of research could help in developing treatments. The most effective treatments now are drugs that increase dopamine in the brain, like those used for Parkinson’s disease. Only two such drugs--ropinirole and pramipexole--are approved for the treatment of R.L.S. Two more are expected to receive FDA approval by 2009.

Those with severe R.L.S. use combinations of the drugs to reduce their leg pain so they can sleep. Many, like Atkins, also need pain medication and sleep aids to be comfortable at night.

Gunzel does not take drugs. On her Web site, rlsrebel.com, she advocates cutting back on caffeine, knowing the triggers and practicing good sleep habits. “Some people with severe R.L.S. don’t need medicine,” she said. “They just need education.”

Recently, sufferers have been battling another problem: skeptics. Critics say that R.L.S. is an example of drug company “disease mongering.”

“The ordinary experiences of life become a diagnosis, which makes healthy people feel like they're sick,” Lisa Schwartz, an internal medicine professor at Dartmouth Medical School, told a Washington Post reporter last year.

These attitudes can have far-reaching consequences. Doctors are ridiculed for diagnosing R.L.S., and research financing may disappear, Rye said.

Why the resistance? In some ways, R.L.S. patients are like migraine sufferers a decade ago, advocates say.

“People who get severe migraines or cluster headaches, their lives are deeply affected,” Bell said. “For everybody who’s never had a migraine, you think, 'How bad can it really be?'”

E-mail: psg2107@columbia.edu