5 Things to Know About Restless Legs Syndrome

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If you’ve ever been reading a book or watching TV in the evening and felt a strange, powerful urge to move your legs, you may have experienced the characteristic symptom of restless legs syndrome (RLS), also known as Willis-Ekbom disease.

People may variously describe the feeling as creepy-crawly, jittery, or electrical. The hallmark of RLS is “the uncontrollable urge to move the leg, that comes on at rest [while awake],” says Suzanne Bertisch, M.D., a sleep physician at Beth Israel Deaconess Medical Center and an assistant professor of medicine at Harvard Medical School.

Symptoms of restless legs syndrome may affect as many as 7 to 8 percent of all U.S. adults, with 2 to 3 percent of people having cases severe enough to require medication.

Yet there’s a lot experts still don't know about RLS, and it can be tricky to treat. For Restless Legs Syndrome Awareness Day, here are five things you should know about this condition.

It’s Easy to Confuse the Symptoms

People with RLS may report a number of related symptoms, including nighttime leg jerks and fatigue. But to diagnose RLS, doctors will confirm with you that you have an uncontrollable urge to move your legs that arises when you’re inactive (sitting or lying down), and that is helped or totally goes away when you get up and move, such as to walk or stretch. It also has to occur or be the most severe in the evenings.

Your doctor will also need to rule out a number of other conditions that mimic some of RLS’s symptoms, Bertisch says. For instance, people with neuropathy, a common complication of diabetes, may experience numbness, tingling, or burning in their legs. Some with arthritis may find that uncomfortable feelings in their joints are helped by moving around. And some people may jerk their legs during sleep, but have no restless legs symptoms while they’re awake—a phenomenon known as periodic limb movements of sleep.

And while many cases of RLS have no known cause, some are triggered by certain medical conditions that your doctor may want to rule out, including pregnancy, kidney disease, and diabetes.

Not Everyone Needs Drugs

Not every person who’s ever had symptoms of RLS needs to take medication. The key question: How much are symptoms affecting your life?

“If it doesn't really bother a person, then they do not need to be treated,” says Brian Koo, M.D., director of the Yale Center for Restless Legs Syndrome. Unlike obstructive sleep apnea, which can increase the likelihood of heart attack and stroke, RLS has not been linked to other health risks, says Koo.

Furthermore, for many people with mild to moderate RLS symptoms, a number of lifestyle or habit changes can make a big difference. Regular moderate exercise can reduce symptoms in some people, though over-exercising—to the point of pain or aching in joints and muscles—can exacerbate RLS.

Planning ahead works for many people. Try doing active chores or going for a walk during the evening if that’s when symptoms usually occur. Or, distract yourself: play video games or knit during that time.

You Might Be Making Things Worse

You may be exacerbating your RLS symptoms without knowing it. Alcohol and caffeine are common culprits; reducing consumption may help.

Not getting enough sleep can also trigger restless legs symptoms. That can create a problematic cycle, according to Bertisch, because RLS often keeps people from sleeping. To compensate, a person may take an over-the-counter sleep medication, usually an antihistamine—but that’s ill-advised. “Antihistamines are actually thought to make RLS worse,” Bertisch says. Instead, try other techniques for getting a good night’s sleep. (See our advice here on how to fall asleep the natural way.)

Certain medications, including several types of antidepressants, can also worsen RLS. Stopping an antidepressant may not be possible, however, so talk with your doctor about other options for easing symptoms.

Consider Your Iron

If you have RLS symptoms, it’s likely your doctor will want to test the iron levels in your blood. The relationship between iron and restless legs syndrome isn’t fully understood, according to Bertisch, but for some people, correcting an iron deficiency may help.

Don’t take iron supplements without talking to your doctor, however. Too much iron can cause gastrointestinal symptoms, or, in certain vulnerable people, can damage the liver and other organs.

Drugs for RLS Can Have Serious Side Effects

If lifestyle changes aren’t enough to keep RLS from affecting your life, drug therapy may be necessary.

But none of the pharmaceutical treatments for RLS works for everyone. One class of drugs approved for RLS is dopamine agonists, such as pramipexole (Mirapex and generic), ropinirole (Requip and generic), and others. These can be effective for many at reducing symptoms. But taken at too high a dose, or over too long a time period, they can backfire, eventually worsening RLS effects. In rare cases, they can also lead to impulse-control disorders—meaning you may become prone to excessive gambling or hypersexuality.

A second class of drugs approved for RLS is gabapentin-like medications, which are also used to control seizures and treat nerve pain. These include gabapentin (Neurontin and generic), gabapentin enacarbil (Horizant), and pregabalin (Lyrica and generic). They can cause weight gain and drowsiness and worsen depression, and there may be a risk of dependence.

Some doctors prescribe low-dose opioids such as oxycodone (OxyContin and generic) and hydrocodone (Vicodin and generic) for severe RLS that’s failed to respond to other treatment. But it’s important to know that any opioid use can have myriad side effects and carries a risk of addiction.

If you’re having serious symptoms, you may want to consider finding a doctor experienced in treating RLS, says Koo. He recommends searching the Restless Legs Syndrome Foundation’s directory of experienced providers, which you can find here.

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