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Restless Legs Syndrome

When Your Legs Have a Life of Their Own

What happens when you want to sit still but your legs want to move?

"When I look back, I just don't know how I functioned. I walked the floor at night and dragged myself around during the day for so many years that it's a wonder I survived," recalls Carol Walker, a Holmdel, New Jersey, woman who has had restless legs syndrome since she was a teenager. Her words only begin to describe the problems associated with this strange but apparently not-so-uncommon neurological sleep disorder.

People who experience restless legs syndrome have sensations in their legs, usually at night, that make moving their legs irresistible. Some people even describe these sensations as feeling like painful electric shocks. "It feels like creeping, crawling sensations or pins and needles, like there are ants crawling around inside your legs," Walker says. "It's just the most horrible feeling in the world."

Like many, she would get up, walk around, massage her legs, rub them against the sheets--do anything but sleep for hours every night. "I would usually fall asleep around 5:00 in the morning," she recalls, "and sleep for a few hours before I'd have to get up and start my day."

But she also found it hard to sit much during the day. She remembers, as a teenager, trying to hold still in a movie or a car and thinking "If I don't move my legs, I am going to scream."

"I know that sounds strange, but that's the way it was," she says. Luckily, she enjoyed dancing, so she wasn't a complete social misfit.

Finding the Answers

Walker is also typical in that it took years until she was diagnosed. She endured a misdiagnosis of multiple sclerosis for eight years. "If you get a doctor who has never heard of this condition, you see a look of disbelief when you try to describe your symptoms," she says.

Restless legs syndrome was previously thought to affect only 2 to 5 percent of people, says Pickett Guthrie, director of the Restless Legs Syndrome Foundation in Raleigh, North Carolina. But estimates of its incidence are now as high as 10 percent. "After an article appeared in Modern Maturity magazine, we got 31,000 letters," Guthrie says. "This condition apparently is much more common in the elderly than was previously assumed. The medical world is just now acknowledging that this is an important medical condition."

No one really knows what causes restless legs. It does tend to run in families, however, and may appear as "growing pains" in children or as pregnancy-related "leg cramps." And it tends to get worse as people get older, experts say.

"One theory that restless legs is associated with a problem in the brain related to dopamine, a neurotransmitter involved in movement, has been proposed. That's because even small amounts of a drug containing dopamine (levodopa) improve symptoms in most people," says Arthur Walters, M.D., associate professor of neurology at the University of Medicine and Dentistry of New Jersey in New Brunswick. That drug is what seemed to help Walker most.

Walker also takes vitamins and minerals, particularly folic acid. And many doctors agree that nutrients can play roles, at least in some cases. Restless legs syndrome has been associated with at least two nutritional deficiencies: iron and folate (the naturally occurring form of folic acid).

"How deficiency of either of these nutrients might cause this problem isn't known," admits June Fry, M.D., Ph.D., professor of neurology and director of the Sleep Disorders Center at the Medical College of Pennsylvania in Philadelphia. "Both of these nutrients are required in the brain and peripheral nerve tissues, but we don't know the details or the actual mechanism behind a possible link. These deficiencies may be not actual causes of restless legs but exacerbating factors, something that makes the underlying disease worse. In my experience, even after a deficiency is corrected, other treatment may be necessary to control the condition."

Here's what research shows.

Iron Weighs In as a Factor

It was back in the 1960s that Swedish neurologist Karl Ekbom, M.D., noted that about one of four people with restless legs syndrome had iron-deficiency anemia and that when these people were treated with iron for their anemia, their legs calmed down, too.

Although case reports of iron's benefits continued in the intervening decades, little research was done that would confirm these findings until researchers at Royal Liverpool University Hospital in England delved into the matter again.

They gave 35 older people with restless legs 200 milligrams of iron (ferrous sulfate) three times a day for two months, without telling the people that it might help their restless legs. When the people were later quizzed on their symptoms, about one-third reported substantial reductions in severity, says Shaun O'Keeffe, M.D., the study's main researcher. "While their symptoms weren't entirely gone, many people got enough relief that they did not require medication for the problem," says Dr. O'Keeffe.

Those obtaining the most relief from iron supplements were people with low blood levels of ferritin, an iron-protein complex that is the main storage form of iron in the body. "None of these people had actual iron-deficiency anemia, and most even had normal blood levels of iron," Dr. O'Keeffe notes.

Experts suggest that if you have been diagnosed with restless legs syndrome, you should have your doctor check your blood level of ferritin. If it is low or borderline, you may benefit from iron supplements.

"How much iron you need depends on your iron level," Dr. Fry says. If you are so low that you have anemia, you may need to take several hundred milligrams a day for a few months.

Your doctor will monitor your dosage by periodically checking your blood ferritin level. Once your level is well within the normal range, a maintenance dosage can be established, or you may be able to get enough iron from iron-rich foods such as clams and fortified cereals.

Note that it's important to determine the cause of your iron deficiency and to correct it. Many of the people Dr. O'Keeffe and Dr. Fry saw were found to have stomach or intestinal bleeding.

The Daily Value for iron is 18 milligrams. Since daily intake of high amounts of iron can be harmful, don't take more than the Daily Value in supplements unless your doctor confirms the need with a blood test.

Folic Acid May Aid Some

While you're having your blood checked for iron deficiency, it might be worthwhile to have your doctor check your blood level of another nutrient: folate, a B vitamin that is essential for normal nerve function. Deficiency of this nutrient appears to be associated with restless legs problems in a small percentage of people.

Your doctor can determine if you're coming up short in this essential nutrient by measuring folate levels in your red blood cells, which is a more accurate way to determine your real status than simply measuring blood levels, Dr. O'Keeffe says.

There is no established dosage of folic acid to treat restless legs, so your doctor is likely to prescribe an amount that corrects your deficiency. Some doctors have given up to 20,000 micrograms a day, but most stick to 5,000 to 7,000 micrograms a day. If folic acid is going to help your problem, it should do so within a few weeks, Dr. O'Keeffe adds.

Since the Daily Value for folic acid is only 400 micrograms, you should talk to your doctor before taking a higher amount. High doses of folic acid can mask the symptoms of pernicious anemia, a condition caused by a deficiency of vitamin B₁₂. For this reason, your doctor should also check your blood for B₁₂ deficiency and provide a supplement if necessary, notes Dr. O'Keeffe.

"Especially in the elderly people I see, folate deficiency often means that people are deficient in other B vitamins as well," Dr. O'Keeffe adds. So your doctor may add a supplement for more than one B vitamin.

Vitamin E: Popular but Unproven

Vitamin E is a popular supplement among many people with restless legs syndrome, reports Guthrie. "Lots of people say that they take it," she says. Whether or not it actually helps is another question. "Some think it does; others don't know," she says.

Although there are a few reports from doctors that vitamin E in doses of 100 to 400 international units daily has helped this condition, no studies have been done to confirm its effectiveness. Doctors who treat this condition don't tend to recommend vitamin E.

Vitamin E may help maintain blood circulation if you have peripheral vascular disease, or poor circulation in your legs, Dr. Fry says. "I am not convinced that circulation problems cause restless legs symptoms, however," she adds. If you decide to take vitamin E supplements, don't neglect other, possibly more helpful treatments for this condition.

A Case of Mistaken Identity

It's possible that what you and your doctor think is restless legs is instead severe leg cramps. This mistake is fairly common, says Dr. Walters. One way to tell: "If quinine (a drug used to treat malaria that also calms nerve firing in muscles) helps your problem, you probably have leg cramps, not restless legs syndrome," Dr. Walters says. If you are interested in trying quinine for your leg problems, talk to your doctor.

If you think you are experiencing leg cramps, it might be helpful for you to make sure that you are getting the Daily Values of calcium, magnesium and potassium (and sodium, too, if you've been on a very restrictive diet). These minerals all play roles in muscle contraction and relaxation. Deficiency of any one can lead to muscle cramps. (If you have heart or kidney problems or diabetes, be sure to check with your doctor before taking magnesium or potassium supplements.) For the full details on using nutrients to deal with leg cramps, see page 353.

One study, from Romania, suggests that magnesium supplements can also help bona fide restless legs. So it might be worth your while to make sure you're getting the Daily Value of this mineral, which is 400 milligrams. Most people fall short of that amount.