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April 2, 2001
Restless Legs, Restless Nights
By Leah Shafer

illustration: Lisa Kirkpatrick

Linda Sieh and her family live in Naper, Nebraska, a town of 110 people about two miles from the South Dakota border. It's quite a drive to Sioux Falls and even farther to Omaha, the two closest big cities. It was on one of these long drives 11 years ago that Linda's legs starting twitching, forcing her to pull over and stretch them. Later that year, her legs began jerking while sharp "creepy crawly" sensations shot through them. Bedtime became a dreaded event -- at night the jerking was so powerful and painful, it left her unable to sleep. At her worst point, Linda slept standing up five nights in a row. The exhaustion and confusion were making her life insufferable.

"I was so depressed," Linda says. "I thought I was the only person in the world who had this stupid thing; I had no idea what was happening."

Desperate for a diagnosis, Linda made a trip to an Omaha neurologist who gave a name to the problems plaguing her: restless legs syndrome (RLS), a neurological disorder that affects as many as 12 million people in the United States. It is a lifelong condition that causes strange sensations in the legs that increase with inactivity. There is no known cure for RLS, although exercises and medication can relieve many of its symptoms.

Identifying symptoms of RLS

According to the Restless Legs Syndrome Foundation, RLS has four hallmark symptoms, all of which are usually present in affected adults:

  • Irksome feelings in the legs often described as "tingling," "creepy-crawly," "itching," "pulling," or like an electrical current. These feelings often create a powerful desire to move the extremities. They may occasionally occur in the arms.
  • Symptoms worsen during periods of inactivity, such as standing or sitting for an extended period, and are typically lessened by pacing, rocking, massaging, shaking, or stretching the legs.
  • Symptoms are worse during the evening and night.
  • The affected individual may have movements of legs, feet, and toes while sitting or lying down.

In addition to these four symptoms, RLS is also strongly associated with periodic movements during sleep (PLMS), a condition that causes leg jerks throughout the night. PLMS and other symptoms can be so extreme that patients sleep poorly or don't sleep at all, which actually exacerbates the symptoms. The physical consequences of RLS come from chronic sleep deprivation.

Another symptom, afflicted arms, usually appears later in the syndrome. William Ondo, M.D., assistant professor of neurology at Baylor College of Medicine, in Houston, Texas, treats RLS patients and says about half his patients also have the same creeping sensations in their arms. In fact, there is a movement to change the name to restless limb syndrome.

sidebar: Coping Strategies for Living with RLS

Who gets it?

The majority of diagnoses are made in adults between 50 and 60, as in Linda's case. But the symptoms usually start much earlier, and there have even been cases in young adults.

Restless legs syndrome is also more common than previously thought. Recently, researchers at Stanford University and Johns Hopkins University found that 15 percent of study subjects had the disorder; in previous studies only 3 to 10 percent of study subjects showed symptoms.

For the majority of sufferers, says Dr. Ondo, RLS is genetic. About two-thirds of sufferers have a relative with RLS. The disorder can also be caused by a number of medical conditions, such as renal failure, diabetes, and diet deficiencies such as anemia or vitamin deficiency. In addition, women in their third trimester of pregnancy are at risk for RLS.

Alleviating the symptoms of RLS

If you suspect you have RLS, a trip to a family doctor or neurologist should be your first order of business. By assessing your symptoms, your health care provider will be able to recommend a good treatment plan.

Some basic ideas for relief include a healthy diet, quality sleep, and avoidance of both caffeine and alcohol (symptoms may abate for a while with coffee or beer, but they usually come roaring back later). You might also find relief from stretching, a hot or cold pack or bath, muscle-fatiguing exercises, and massage.

To keep your mind occupied when you are seated for long periods of time, try activities that take concentration. Crossword puzzles, reading, video games, or knitting take the focus away from your discomfort.

If nothing seems to sufficiently relieve your symptoms, medication is an option. While the Food and Drug Administration has not approved any drugs for the treatment of RLS, doctors commonly prescribe four classes of drugs: dopamine agonists, benzodiazepines, opioids, and anticonvulsants.

"I prescribe opioids for about 10 percent of my patients," Dr. Ondo explains, "particularly those with painful RLS." He rarely prescribes benzodiazepines, however, except when the symptoms have been eliminated but the patient still can't sleep due to conditioned insomnia.

Dopamine agonists, Dr. Ondo says, are the most effective RLS medications he prescribes. Originally invented and marketed for Parkinson's disease, the three that he prescribes most for RLS are pergolide (Permax), pramipexole (Mirapex), and ropinirole (Requip). One of these three works almost every time, he says, but patients can develop tolerance over time, so doctors need to watch symptoms carefully. The other drugs are used more sparingly, like opioids or the anticonvulsant drug phenytoin (Dilantin).

Linda developed tolerance to one of her medications before settling on pergolide. Her neurologist had tried several things, including quinine and clonazepam (Klonopin). The pergolide works, but she has to take the doses regularly, or the symptoms start up again.

"I do sleep, but about one or two o'clock, I can feel the jerking starting and I reach over and take half a pill," she says. "I'd go crazy if I didn't take my medication."

Emotional support

Linda has been able to plan her life to accommodate RLS. During baseball games, she sits at the end of the bleachers so she can get up and move her legs. At her kids' school events, she sits near the back so she can walk around. On airplanes, she requires an aisle seat and brings along extra medication. She doesn't drink too much caffeine and tries alternative therapies, like magnets, when they offer promise.

Part of Linda's problem was feeling so alone in her struggle. When she finally figured out what was going on with her body, she decided to start an RLS support group in Omaha. Every three months for the past three years, Linda and about 30 people have met and talked about the frustrations they face as well as strategies for success. They also educate themselves on new advances in the field by arranging lectures from doctors or neurologists. The camaraderie of the groups helped Linda realize she was not the only one with RLS.

"It's good for people to talk to each other," Linda says. "I knew that other people had this ... so I began to relax and learn more about it."

Related link(s):

Outside link: Restless Legs Syndrome Foundation

Outside link: The National Institute of Neurological Disorders and Stroke information page on RLS

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