Restless legs syndrome on the radar
As scientists better understand this once-perplexing disorder — which disproportionately strikes women — treatment approaches are shifting.
- Reviewed by Toni Golen, MD, Editor in Chief, Harvard Women's Health Watch; Editorial Advisory Board Member, Harvard Health Publishing; Contributor
Dr. John Winkelman used to refer to restless legs syndrome (RLS) as the Rodney Dangerfield of medicine — since, as the late comedian famously claimed about himself, the disorder "got no respect."
Long after RLS was first described in the 17th century, the creepy-crawly, sometimes painful leg sensations characterizing it — which are typically worse while resting — were often dismissed as a bizarre neurosis. And even two decades ago, RLS was still called "the most common sleep disorder you've never heard of," recalls Dr. Winkelman, a professor of psychiatry in the Division of Sleep Medicine at Harvard Medical School.
But many more people are now aware of RLS, which affects twice as many women as men. What's also evolving is the approach to RLS therapies aiming to protect patients' sleep and sanity from its relentless symptoms, which typically strike around bedtime.
In March 2024, the American Academy of Sleep Medicine (AASM) drafted its first updated clinical treatment guidelines in a dozen years. Notably, they recommend veering sharply from using drugs that boost the brain chemical dopamine — long a staple of RLS treatment — since newer research has revealed these medications often worsen RLS symptoms after long-term use.
"Patients used to send me flowers and chocolate when I prescribed these medications," says Dr. Winkelman, who chaired the AASM committee that drafted the new guidelines. "But it has become clear they were making things worse."
Risk factors
Up to 10% of Americans cope with RLS, according to the National Institutes of Health, and about a quarter of them experience disruptive symptoms at least twice a week. Its causes are still murky, but certain factors increase the odds of developing the disorder:
Age. RLS is more common — and symptoms more severe — after 50.
Genetics. Evidence suggests RLS runs in families, accounting for about 20% of a person's risk.
Iron-deficiency anemia. RLS can occur from very low iron levels, which is likelier in women due to monthly periods or conditions leading to heavy bleeding, such as fibroids or endometriosis. But some people with normal iron levels have an iron-transport problem, meaning their bodies don't "push" iron to their brain cells as needed. Iron pills may only restore body iron, so the oral form may not be sufficient in some people with RLS due to low iron brain levels.
Pregnancy. About a quarter of women will have RLS while expecting, typically in the second or third trimester.
Iron testing tipsIf your doctor suspects an iron problem is contributing to your RLS, it's wise to seek detailed blood testing, according to psychiatrist Dr. John Winkelman. Make sure your doctor isn't just assessing ferritin — a protein containing iron — but also iron and total iron binding capacity. Also, have the testing done in the morning, and don't take any iron containing vitamins or eat any red meat for two days beforehand. "We want your iron level, not a hamburger level," he says. |
Evolving approaches
Unless you had RLS during pregnancy, in which case symptoms usually disappear after childbirth, the condition is often lifelong. But that doesn't mean you can't find relief.
Some treatments are considered mainstays:
Iron. Oral iron tablets are recommended to people with low iron levels. But for those whose iron levels are deemed "normal" but whose bodies don't efficiently transport iron to the brain, intravenous iron therapy may be prescribed.
Anticonvulsants. These drugs include gabapentin (Neurontin, generic versions), and pregabalin (Lyrica).
Other therapies have hit the scene only in recent years or should be used sparingly:
Electrical stimulation therapy. Patients using this nondrug option place battery-operated transcutaneous electrical nerve stimulation (TENS) pads below the knees. They deliver a gentle current through the skin and muscles, disrupting abnormal nerve signals.
Long-acting, low-dose opioids. These include methadone (Dolophine) and buprenorphine (Suboxone, Subutex). They are used at extremely low doses, only in people with severe RLS.
Dopamine-boosting drugs. Long considered first-line RLS treatment, these medications — including carbidopa/levodopa (Sinemet), pramipexole (Mirapex), ropinirole, and the skin patch rotigotine (Neupro) — should now be prescribed only for those for whom other therapies don't work. "They make RLS worse in a very particular way — symptoms start earlier and earlier in the day and may go from the legs to the arms and sometimes upper torso as well," Dr. Winkelman says. "For the bulk of people with RLS, we're recommending against these medications unless nothing else is working."
Image: © Marcos Calvo/Getty Images
About the Author
Maureen Salamon, Executive Editor, Harvard Women's Health Watch
About the Reviewer
Toni Golen, MD, Editor in Chief, Harvard Women's Health Watch; Editorial Advisory Board Member, Harvard Health Publishing; Contributor
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