“Trying to describe my symptoms is the challenge of the century. They usually begin while seated, with a jerky and uncontrollable movement of either leg accompanied by creepy-crawly sensations, resulting in an irresistible desire to stand up and walk, which almost instantly results in relief. The pressure to do so can interrupt any other activity, such as eating dinner, reading, sometimes sleep or even an evening at the theater or a concert. The effects on my psyche, over the years, have been devastating. The only good news is that experience has taught me that those feelings will last only a few minutes even though the pleasures of the evening have been disrupted.”
That’s how a retired TV producer describes restless legs syndrome (RLS), a malady that has tormented him for half his lifetime, notes Marvin M. Lipman, Consumer Reports’ chief medical adviser. He has tried many treatments. Some have helped temporarily, while others have only worsened his symptoms.
But he’s luckier than most victims because at least he was given an accurate diagnosis. As many as one in 10 adults may suffer from the disorder. A survey of almost 16,000 people, reported in the Archives of Internal Medicine in 2005, found that 7.2 percent had symptoms compatible with RLS. Almost 3 percent had symptoms labeled as moderate or severe (occurring two or more times a week). Most had discussed them with a doctor, but almost 70 percent received such misdiagnoses as poor circulation, arthritis, back problems, varicose veins and depression.
Many people have thus been treated inappropriately or simply dismissed as neurotics. The current criteria for RLS diagnosis say that the patient must have an uncontrollable urge to move one or both legs:
●That is accompanied by uncomfortable sensations.
●That almost always happens in the evening or at night.
●That occurs while at rest.
●That is relieved by walking or stretching.
If that describes your symptoms, you should bring them to the attention of your physician.
The condition was identified as a distinct syndrome in the 1940s, although doctors initially considered it nothing more than an inconvenience. But the impact of the disorder on quality of life has become apparent, especially in people with the most severe symptoms.
Sleep problems occur in three out of four people with RLS. Symptoms include disrupted sleep and the inability to fall asleep, which often have far-ranging consequences, including daytime drowsiness and difficulty concentrating. Depression, withdrawal and deterioration of interpersonal relationships have also been described. A study in the journal Neurology found a higher mortality rate in men with RLS than in those without it over an eight-year period.
Because of the relationship of RLS to iron-deficiency anemia, iron levels should always be tested. The cause of RLS continues to remain in doubt. The consensus points to either a relative lack of the neurotransmitter dopamine or a deficiency of iron in the brain. Tranquilizers such as diazepam (Valium and generic) have helped some people with mild symptoms, but the evidence of their effectiveness is weak. Interest is now centered on the use of drugs that activate dopamine receptors as well as certain anti-seizure drugs.
A large meta-analysis from Germany published online by the journal Sleep Medicine Reviews compared randomized, placebo-controlled studies of treatments for RLS. Overall, dopamine agonists demonstrated larger effects on symptoms than did anticonvulsants or opioids. Studies of iron therapy were promising but inconsistent. The four medications approved by the Food and Drug Administration for treating RLS are gabapentin enacarbil (Horizant), an anticonvulsant, and the dopamine agonists pramipexole (Mirapex and generic), ropinirole (Requip and generic) and rotigotine (Neupro).
The retired TV producer has tried them all, with varying degrees of success. He usually notices some initial improvement, almost always followed by a phenomenon known as augmentation, in which the symptoms are worse than before. He has now given up on medication.
“The only consistent relief I have found over the past dozen years has been from doing jigsaw puzzles,” he says. “I can sit for hours with no hint of RLS. Go figure.”
For further guidance, go to www.ConsumerReports.org/Health, where more detailed information, including CR’s ratings of prescription drugs, treatments, hospitals and healthy-living products, is available to subscribers.