man playing guitar with granddaughter

When your legs won’t stay still

September 19, 2016 | UCI Health
Restless leg syndrome (RLS)

A young man kicks and flexes his legs throughout a four-hour plane trip. A middle-aged woman rises each night and paces the floor to relieve the pain in her calves. A child fidgets repeatedly in her chair every afternoon.

They each use different words to describe the sensation that drives their need to move: creepy-crawly, pulling, throbbing. Yet all three find relief through movement and suffer the same condition.

An uncontrollable urge to move

Their symptoms are typical of restless leg syndrome (RLS), a sensory motor disorder that causes unpleasant feelings in your arms or legs along with the uncontrollable urge to move or stretch the affected limb. Its cause is unknown, but it is believed to result from an iron deficiency or other glitch in dopamine-activated areas of the brain.

RLS affects up to 10 percent of Americans, including an estimated 1 million school-age children, according to the National Institutes of Health. It is an often misunderstood, sometimes misdiagnosed, but highly treatable condition. So if you’re affected by it, you need suffer no longer.

“I’ve seen people diagnosed with restless leg syndrome that don’t have it and others where the diagnosis was missed. Sometimes children get diagnosed with ADHD because they have trouble sitting still. But it can usually be diagnosed based on a set of symptoms,” says Dr. Ruth Benca, chair of the UCI Health Department of Psychiatry & Human Behavior, who studies and treats sleep disorders, including RLS.

4 clues that you may have restless legs

To see if you have RLS, your doctor will examine you, ask about your symptoms, and look for four specific features:

  • An urge to move your legs, arms or other body parts, often accompanied by an unpleasant sensation
  • Symptoms that occur or worsen during periods of rest or inactivity
  • Symptoms that worsen at night and tend to improve or disappear in the morning
  • Relief of symptoms by movement or stretching

All four must be present to distinguish RLS from conditions such as sleep-related leg cramps or peripheral neuropathy, which can mimic some of its symptoms.

“People may have symptoms such as burning feet, which is associated with diabetic peripheral neuropathy and can emerge at nighttime. But that’s not alleviated by getting up and moving about,” says Dr. Neal Hermanowicz, a neurologist and director of the UCI Health Movement Disorders Program.

“There are other possible sources of symptoms similar to RLS, so taking a careful history, performing a clinical examination and, when appropriate, testing, are important to establishing a correct diagnosis.”

Treating restless leg syndrome

If you have RLS, your treatment will depend on your specific needs.

Your doctor will first rule out — or treat — any underlying nutritional deficiency before prescribing medications. In fact, if your symptoms occur only occasionally, you may take medication solely on an as-needed basis or for specific situations such as long plane rides or car trips.

For moderate to severe RLS, your doctor may prescribe a dopamine-enhancing drug such as ropinirole (Requip®) or pramipexole (mirapex®) or rotigotine (neupro®). It may take time to find the right dosage, however, and your doctor will need to monitor you for any side effects. Sometimes the medication can lead to augmentation, a syndrome that includes experiencing symptoms earlier in the day or in other parts of your body. Occasionally, these medications can cause risk-taking or compulsive behavior, which can show up as excessive gambling, spending, eating or other actions.

“With these dopamine medications, compulsive behavior may emerge in people who have never had this before. Although this does not occur in most patients, it does require that the patient and their spouse or care partner be aware of this potential. I inquire about side effects at each visit.” Hermanowicz says.

Another medication approved by the FDA for treatment of moderate to severe RLS is gabapentin enacarbil (Horizant™). This medication works differently from the others. It does not have a dopamine effect, and is not known to create side effects of compulsive behavior.

“So far, it has not been linked to augmentation or the behavioral problems that may occur with the dopamine agonists [dopamine enhancing medications],” says Hermanowicz, whose recent research found that gabapentin enacarbil is effective and well tolerated in patients who previously used dopamine-enhancing medications.

Lifestyle changes

Your treatment will likely also include lifestyle changes, such as limiting caffeine intake, exercising daily and adopting good sleep hygiene habits.

“Things like hot baths, massage and stretching before bed can help,” says Benca. “You also want to avoid sleep deprivation because that can make your symptoms worse.”

Other things to avoid include common allergy medications such as Benadryl, and certain antidepressants such as selective serotonin reuptake inhibitors (SSRIs), which can worsen RLS symptoms.

Care for complex cases

At times, RLS can be challenging to treat because its symptoms can evolve over time, changing in severity or duration. Such cases are Hermanowicz’s specialty.

“I tend to see patients who have tried the first-line medications, had success for a while, but then developed more troubling symptoms. Or they have perplexing symptoms that are not quite so clear to their primary care provider,” he says.

“I review their medication history, including side effects they have experienced, and determine what went wrong. When you dig a little bit, you discover that their dose may have been inadequate or timed inappropriately, or they need a different medication.”

If you think you have RLS

If you suspect you may have RLS, discuss your symptoms with your doctor and get a clinical examination to rule out any underlying condition or nutritional deficiency. If your symptoms are severe, unresponsive to treatment, or accompanied by a suspected sleep disorder, you may need a referral to a neurologist or sleep specialist.

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