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The performance of "King Lear" had barely begun when Weatherly Ralph remembers feeling an uncomfortable pressure in her calves, as if her muscles had suddenly, inexplicably, tensed up. She tried crossing her legs and flexing her feet, then pounding her leg with her balled fist, but the feeling persisted. By the second act of Shakespeare's nearly four-hour long play, the 17-year-old was in agony. " If I didn't move my legs every five seconds, I thought I would have to stand up and scream. I remember thinking, there's really something wrong. What is this?" says Ralph, now 28. "I had no idea it was a legitimate [medical] condition."
It would be another decade before she learned the name for it. Initially when she mentioned the strange leg sensations she started feeling as a teenager, her mother chalked it up to the family's "funny legs." Ralph's grandmother had experienced similar symptoms, so Ralph said she dismissed it as a quirky hereditary trait. But last summer, the Harvard law student told her aunt, Diane Wood, for the first time about the discomfort she often felt in her legs, especially when she had to sit for long periods at dinner parties, on airplane flights--or through Shakespeare plays. Wood was shocked. The 53-year-old had suffered from the same symptoms--and some even more severe--for much of her life. When Wood was 44, her doctor finally sent her to a neurologist who diagnosed her condition as restless legs syndrome (RLS).
A little-known condition until recently, RLS is estimated to affect as much as 10 percent of the population. "It's a really prevalent condition but, at the same time, it hasn't been well recognized by physicians and patients," says Dr. Clete A. Kushida, an assistant professor in the department of psychiatry and behavioral sciences at the Stanford University School of Medicine and a medical advisory board member of the RLS Foundation.
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In fact, a survey last month by the RLS Foundation found that the condition remains largely unknown and widely misunderstood by the general public despite the fact that it is more common in the United States than more recognized conditions such as diabetes. Nearly two thirds of the 1,122 adults interviewed in the survey said they hadn't heard of RLS when it was identified only by name; however, when the condition was described in detail, more than 22 percent said they or someone they know had experienced symptoms associated with RLS.
"Restless legs syndrome is the most common medical condition you've never heard of," said Bob Waterman, chairman of the RLS Foundation's board of directors and an RLS sufferer, in a statement after the survey was released.
It's easy to dismiss the symptoms as temporary in less severe cases, since they may come and go. Ralph said she was kept awake by the sensations in her legs during the summer but hasn't had any flare-ups for the past couple of months. Sufferers are also often misdiagnosed by their physicians. "Many doctors don't really know what RLS is or how to ask about it, so patients don't usually get diagnosed properly," says Meir Kryger, director of the Sleep Disorders Center at St. Boniface Hospital Research Center in Canada, who has several RLS patients. Wood says she experienced symptoms for nearly four decades as the condition got progressively worse. By the time she was finally diagnosed by the neurologist, Wood's legs had begun twitching involuntarily. "I'd be in meetings at work, and I was so distracted, I'd have to keep my hands on my leg to try and keep it from moving--it happened at fancy dinners, fund-raising events. I'd have to sit on one leg sometimes to keep it from moving," says Wood, who was then working for the World Wildlife Fund. "It was embarrassing and scary. I thought I had something really horrible."
Wood says she was relieved to know that it was RLS. And once she was diagnosed and began talking to her family about it, she realized it wasn't only her niece who suffered from the same condition, which can be hereditary. Her 88-year-old mother has RLS, as does her own 14-year-old daughter. "She was so happy when I said "There's a word for what you're experiencing--it's not your fault'," remembers Wood. "I was able to explain it to her, to her school, to the teachers. Now she doesn't have to go through all the weirdness."
Tending to be more pronounced at nights, symptoms range from unpleasant sensations in the legs that come and go, to involuntary twitching. In some of the more severe cases, Kryger says patients describe feeling as if insects are crawling under their skin when they try to sleep. RLS can wake patients up several times during the night, leaving them exhausted and drowsy the next day. "It can really have a significant impact on their quality of life," adds Kushida.
There is no cure for RLS, but there are several medical treatments to help relieve symptoms. Some of the more common include: dopaminergic agents like Sinemet, a drug frequently prescribed for Parkinson's patients; sedatives, which help patients sleep; pain relievers like codeine, and anticonvulsants like Neurontin, which is marketed to treat nerve pain. The U.S. Food and Drug Administration has not yet approved any medication specifically for the treatment of RLS, but that might happen soon. The agency is now reviewing a drug called Requip, made by GlaxoSmithKline, which is currently marketed for treating Parkinson's.
Wood takes one of those Parkinson's medications, along with several vitamins and minerals (she says magnesium, calcium and iron supplements seemed to make a difference). There are no studies showing a definitive link between increased iron levels and diminished symptoms, but researchers have found that people with iron deficiencies are more susceptible to RLS--particularly women. And Kryger says pregnant women are two to three times more likely to have RLS than other women in part because the fetus tends to take iron for its own use.
RLS symptoms can also be alleviated by stretching, using hot or cold packs, taking a bath or exercising. Wood likes to walk or jog on a treadmill before she goes to bed at night, or put her legs in cold water when she's experiencing symptoms.
For her niece, there's relief in just knowing that she is not alone. "I go on with my life, and I deal with it," Ralph says. "But it certainly gave me peace of mind to know that my family and many people understood what I was going through. At least I know I'm not the only one."
Now she and Wood, who has joined the RLS Foundation board, say they are trying to get the word out so that millions of others suffering from the syndrome can say the same.
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