DEAR DR. ROACH: Why do people snicker when I tell them I have RLS? They wouldn’t laugh if they knew the amount of sleep deprivation I have endured during the 20 years it took to correctly diagnose it. I think if it hadn’t been for Sinemet (levodopa and carbidopa), a Parkinson’s drug, I would have gone mad long ago. Has anyone discovered what causes it? —G.S.G.
ANSWER: Restless leg syndrome causes an urge to move the legs (and sometimes arms), which is worse at nighttime and is relieved by movement. It is usually accompanied by unpleasant sensations in the legs. When accompanied by sleep deprivation, as yours has been, it is also called periodic limb movement disorder.
The cause is known only in a minority of cases. About 40 percent of cases seem to run in families, and several genetic factors have been identified. Iron deficiency sometimes is associated with RLS, and replacement of the iron can improve symptoms. Moderate exercise, leg massage and heat (say, a warm bath before bed) are some nondrug ways of improving symptoms. Levodopa/carbidopa is an effective treatment; pramipexole (Mirapex) and ropinirole (Requip) also are effective for many people. There are other alternatives as well. An expert in the condition, usually a neurologist, is essential for severe cases.
I think the name “restless leg syndrome” may be part of why people don’t take this condition as seriously as it deserves. After all, legs are supposed to move, and being “restless” doesn’t sound so bad — but as you know, it’s a lot more than that. For this reason, the new name, Willis-Ekbom disease, is preferred by some.
Great information about this condition is available at RLS.org.
The booklet on restless leg syndrome and nighttime cramps offers more tips. Readers can obtain a copy by writing: Dr. Roach — No. 306, Box 536475, Orlando, FL 32853-6475. Enclose a check or money order (no cash) for $4.75 U.S./$6 Can. with the recipient’s printed name and address. Please allow four weeks for delivery.