Colin, age 65, can’t stop moving his legs in bed. He feels pin pricks in them and sometimes even a sensation of worms crawling inside them. The only thing that eases these unpleasant symptoms is moving his legs. When he finally sees his doctor, he learns he has restless legs syndrome (RLS), a sleep and movement disorder associated with pain and significant sleep disturbances.

Colin is typical of patients with RLS, whose symptoms worsen with inactivity—especially at bedtime—and have an irresistible urge to move their legs for relief. More common in older adults, RLS is progressive and can be debilitating. It often goes untreated or is misdiagnosed by healthcare practitioners who aren’t familiar with it.

Since the Food and Drug Administration approved ropinirole (Requip) to treat RLS in 2005, the disorder has gotten increased media attention. This article provides basic information to help you answer patients’ questions and provide appropriate care.

What’s the prevalence of RLS?

RLS occurs in up to 10% of the population. It may begin during childhood, but many children are misdiagnosed with conditions such as growing pains, anxiety disorders, or attention-deficit/hyperactivity disorder. One-third of persons eventually diagnosed with RLS report they experienced their first symptoms before age 20. Almost 10% of the elderly population have RLS. In older women, the prevalence is 13.9%; in older men, 6.1%.

What are the signs and symptoms?

With symptoms occuring at rest (usually at bedtime) and subsiding only with movement, RLS commonly delays or prevents sleep onset. (See Leg complaints in RLS patients.) Impaired sleep, in turn, may lead to exhaustion and daytime fatigue that affect job performance, relationships, concentration, memory, and the ability to complete tasks and perform activities of daily living.

Is there a cure?

RLS has no cure. Symptoms usually worsen with age. Remissions are possible but usually temporary.

Are there different types of RLS?

RLS has two main types—primary (idiopathic) and secondary.

• Primary RLS occurs with no other disease and is associated with a family history of RLS. In about half of cases, one parent has the disease, which is passed on by an autosomal chromosome. More recently, a specific genetic link has been identified, confirming RLS as a true syndrome.
• Secondary RLS results from a specific health condition, such as end-stage renal disease (ESRD), iron deficiency, or pregnancy. Other conditions that have been shown to be related to RLS include cardiac disease, neuropathy, rheumatoid arthritis, diabetes mellitus, fibromyalgia, folate and magnesium deficiencies, stress, and adverse drug reactions. These conditions must be treated before a definitive diagnosis of RLS can be made. With secondary RLS, severe symptoms tend to develop rapidly.

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How is RLS diagnosed?

Diagnosing RLS is difficult because symptoms are self-reported, nonspecific, nocturnal, unwitnessed, and hard to identify. The syndrome commonly is mistaken for peripheral neuropathy, varicosity, intermittent claudication, nervousness, insomnia, stress, arthritis, muscle cramps, or aging. In a recent study of 551 RLS patients, 357 reported consulting a physician about RLS symptoms but only 46 received a correct diagnosis.

For an accurate diagnosis, a thorough sleep history should be taken in any patient who complains of a sleep disturbance or abnormal leg movements at night. Patients must meet the four diagnostic criteria of RLS. (See Minimal diagnostic criteria for RLS.) Diagnostic tests may be done to rule out comorbid conditions that could be exacerbating the syndrome. (See Tests to rule out underlying conditions.)

A thorough medication review also is crucial, as RLS symptoms can stem from GI medications, antipsychotics, anxiolytics, anti-­depressants (especially fluoxetine and sertraline), and antihistamines (particularly promethazine and diphenhydramine).

How does the syndrome progress?

RLS may be categorized by symptom progression or response to treatment.

• Intermittent RLS may occur sporadically with no set pattern and may require behavioral modifications, such as eliminating caffeine, smoking cessation, and getting exercise.
• Daily RLS causes daily symptoms and requires pharmacologic interventions, such as low-potency opioids, gabapentin, or dopamine agonists. Unfortunately, with time or dosage titrations, such drugs may lose their efficacy.
• Refractory RLS may involve intolerable adverse drug effects and augmentation—a phenomenon in which symptoms begin to worsen and arise at least 2 hours earlier than they did before drug therapy began. They may even spread to previously unaffected body parts, such as the arms. Refractory RLS is difficult and frustrating to treat, with patients requiring medication changes until symptoms decrease.

How is RLS treated?

The primary treatment goal is to reduce symptoms of sleep disturbances and discomfort. In secondary RLS, controlling underlying disorders helps control symptoms.

Medical management may include dopamine-receptor agonists, dopa­mine precursors, benzodiazepines, opioids, and anticonvulsants. Dopamine-receptor agonists are the standard of treatment, and include ropinirole (Requip) and pramipexole (Mirapex). These newer dopa­minergics cause fewer adverse effects than the older ones (such as levodopa) and may be more effective for longer periods. However, a recent meta-analysis of their benefits found their long-term use a problem, as with all dopaminergics.

Other drugs prescribed for RLS may include clonidine, baclofen, tramadol, and zolpidem tartrate. Few controlled studies have been done to evaluate their efficacy, but many patients report them to be helpful. Nonetheless, treatment may be frustrating, as these drugs may cause adverse effects and eventually lose their efficacy. In some patients, nutritional supplements to correct deficiencies in vitamins, electrolytes, or iron may improve symptoms.

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How is secondary RLS treated?

In secondary RLS, the underlying condition, such as ESRD or iron deficiency, is treated when possible. For instance, oral iron supplements can correct iron deficiency and reduce symptoms in selected patients.

Healthcare providers also may treat comorbid conditions that exacerbate symptoms. If these interventions prove ineffective and symptoms start to affect the quality of life, further pharmacologic interventions should begin. Finding a medication that alleviates symptoms may be challenging for some patients.

Are nonconventional treatments helpful?

Some patients report that complementary and alternative therapies relieve symptoms. These therapies include massage therapy, meditation, music therapy, cold or hot compresses, vibration, and transcutaneous electric nerve stimulation. Their effectiveness hasn’t been documented.

What lifestyle changes might help?

Encourage patients to make lifestyle changes that may minimize symptoms. Mild RLS symptoms may respond to such measures as eliminating caffeine, tobacco, and alcohol; getting moderate exercise; establishing regular sleep patterns; and maintaining behaviors that promote health. (See Health-promotion behaviors for RLS patients.)

Interestingly, some patients find that caffeine consumption temporarily relieves symptoms and delays their onset; however, when symptoms do arise, their intensity is greater. Similarly, alcohol consumption initially may ease restlessness but cause worsening symptoms later.

Behavioral modification includes coping strategies and attending support groups to learn how to manage RLS symptoms.

What can nurses do?

Be aware that RLS is a condition that affects quality of life. Stay alert for insomnia or other indicators that suggest your patient should undergo a thorough sleep history. Also, because many drugs exacerbate RLS symptoms, be suspicious if a patient reports an “allergy” or a bad reaction to a drug that involves restlessness or insomnia. Finally, be prepared to recommend that your patient consult a specialist in sleep or movement disorders.

Selected references

Hening W, Walters AS, Allen RP, Montplaisir J, Myers A, Ferini-Strambi L. Impact, diagnosis and treatment of restless legs syndrome (RLS) in a primary care population: the REST (RLS epidemiology, symptoms, and treatment) primary care study. Sleep Med. 2004; 5(3):237-246.

Silber MH, Ehrenberg BL, Allen RP, et al. An algorithm for the management of restless legs syndrome. Mayo Clin Proc. 2004;79(7): 916-922.

Stefansson H, Rye DB, Hicks A, et al. A genetic risk factor for periodic limb movements in sleep. N Engl J Med. 2007;357(7):639-647.

Norma Cuellar is an assistant professor at the University of Pennsylvania School of Nursing in Philadelphia.