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So, the patient goes to a neurologist. Every night, he tells the doctor, he gets these creepy, crawly feelings in his legs as he starts to drift off to sleep. It’s not pain, exactly, but an irresistible urge to move his legs. He gets up, does a few deep knee bends. That helps. But as soon as the patient goes back to bed, the creepy-crawlies start up again. Sometimes, his legs start kicking periodically, too. So, he gets up and walks, for hours, until exhaustion overwhelms his twitchy legs and frazzled psyche. With luck, he gets a few hours of sleep.
“What have I got?” the frustrated patient asks. “I don’t know,” the doctor replies. “But I’ve got it, too.” Sad to say, this is a true story that a patient once told Dr. John Winkelman, medical director of the Sleep Health Center at Brigham and Women’s Hospital. Most people, including many doctors, have never heard of Restless Legs Syndrome, although this under-diagnosed neurological disorder ruins the sleep — and the quality of life — of an estimated 20 million Americans.“ But people are going to hear a lot more about this disorder in the next couple of years,” Winkelman said, “because we now recognize how common it is and we’re beginning to get some insights into its underlying causes.”
Scientists haven’t filled in all the blanks, but they have a pretty good idea of what goes wrong in the brains of people with Restless Legs Syndrome, thanks to brain scans and autopsies of RLS patients. An iron deficiency in parts of the brain that control movement, called the substantia nigra, the caudate nucleus and the putamen, may impair the ability of brain cells to make the neurotransmitter dopamine, said Dr. Wayne Hening, clinical associate professor of neurology at the Robert Wood Johnson Medical School in New Jersey.
The result is creepy-crawly sensations in the legs and the urge to move the legs. These symptoms come on with rest or immobility and are relieved — transiently — by movement. Many people with Restless Legs Syndrome also have what’s known as “periodic limb movements of sleep,” or uncontrollable kicking during sleep.“
Of all the disorders affecting sleep, this is the one that produces the most chronic sleep loss, year after year,” said psychologist Richard Allen of the Center for the Study of Restless Legs at Johns Hopkins Bayview Medical Center. His research shows that “quality of life is as impaired in these patients as in patients with other chronic diseases like hypertension, arthritis, diabetes, depression, angina or a history of heart attack.”
Restless Legs Syndrome is a life-wrecker. It often runs in families, suggesting a possible genetic factor, and can start in childhood.“ These people can’t relax. They’re tired all the time,” said Jerry Siegel, professor of psychiatry at the Neuropsychiatric Institute of the University of California at Los Angeles and chief of neurobiology research at the Sepulveda VA Hospital. Decade after decade of insufficient sleep is just plain “discouraging,” said Marge Fuhr, 67, a retired schoolteacher in Boulder, Colo. “I’m just totally exhausted.” For Mimi Lebien, 43, a self-employed medical historian in Covington, La., the worst part is the sense of “shame that comes with people who can’t sleep.”
Like Furh, Lebien is a board member of the Restless Legs Syndrome Foundation. Her struggle with RLS began when she was 7 or 8, on a long family car trip when she made her brother and sister lie down on the floor of the backseat because “I needed to kick and kick and kick. . . . I kicked my legs halfway across New Mexico.” Spouses suffer, too. Anita Raj, 41, of Bedford said that, before her husband, Tim Bemis, 42, took medication for his RLS and periodic leg movements, he would get two to three hours of sleep per night.“ He used to move every six seconds. I used to count `one, one thousand, two one thousand . . .’
It would keep me awake.” Even now that he can sleep six or seven hours, she said, “there are probably 10 nights a month where we sleep in separate beds.”
So, what to do if you believe you are among the millions with RLS? First, if your regular doctor can’t help, contact a neurologist or sleep clinic. You’ll probably be given blood tests for iron levels. If these tests show low iron in your blood, taking oral iron (ferritin) may help. (Don’t do this on your own. If you take too much iron, you can develop a dangerous condition called hemochromatosis, or iron overload, which can cause cardiac and other problems.)If your blood test is normal, however, you still may be iron-deficient in the brain. In this case, oral iron probably won’t help, but researchers are now trying to determine whether giving RLS patients iron intravenously will.
The low iron levels that can lead to RLS can have several triggers, including any condition that leads to persistent anemia, pregnancy, stomach surgery, kidney failure and dialysis. Certain antidepressants can act as triggers, too — those like Prozac (the so-called SSRIs) that boost serotonin levels in the brain. Don’t quit taking SSRIs on your own, but talk to your doctor about switching to an antidepressant that works differently, or adding RLS medications to your regimen. If iron supplementation and simple measures like avoiding alcohol, caffeine and sleep deprivation don’t help, the next step is to take medications that boost dopamine activity in the brain. The three most effective are — Requip (ropinirole), Mirapex (pramipexole) and Permax (pergolide), all approved for Parkinson’s disease. (There are no drugs yet approved specifically for RLS.) Sinemet (carbidopa-levodopa), another Parkinson’s drug, is also used sometimes for Restless Legs Syndrome, but it sometimes can make symptoms worse or appear earlier in the day. Another dopamine-booster, Sumanirole, not yet on the market, is in clinical trials now.
For more information on the trial, call 617-527-3501, ext. 115).Opiates (painkillers) also may help, including Percocet (oxycodone and acetaminophen) and Tylenol-3 (acetaminophen and codeine). In some cases, anticonvulsants such as Neurontin (gabapentin) may also. None of these drugs is likely to provide total relief, but if they help you get five to seven hours of sleep a night instead of two or three, that’s huge. So don’t suffer. If you think you have RLS, see a doctor; preferably, as Mimi Lebien of Louisiana puts it, one “who takes you seriously.”
Judy Foreman is a freelance columnist who can be contacted at foreman@globe.com.
© Copyright 2003 Globe Newspaper Company.
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