Andrew R. Spector, MD, FAAN, is so passionate
about helping people with restless legs syndrome (RLS) that he wrote an entire book about it. Called Navigating Life with Restless Legs Syndrome, the work is the latest offering from the American Academy of Neurology’s Brain & Life book series.
This is a comprehensive and up-to-date reference guide for the 10 percent of Americans who experience RLS, a neurologic condition that causes discomfort in the legs and an uncontrollable urge to move them when resting. It’s considered both a sleep and movement disorder because it happens when resting or trying to sleep and moving the legs helps relieve the unpleasant feelings.
RLS was first described hundreds of years ago, says Dr. Spector, a sleep specialist and associate professor of neurology at Duke University in Durham, NC. At one point, the disorder was named Willis-Ekbom disease for two of the physicians credited with identifying it.
We spoke with Dr. Spector about his new book and how it can help people with the condition.
How is RLS diagnosed?
It’s relatively easy to diagnose and requires no testing. You just have to meet the criteria, which are simple. Do you have an uncomfortable sensation in your legs when you’re lying or sitting still, particularly later in the day, and is it better when you wake up or move your legs? We make a diagnosis based entirely on clinical symptoms.
How important is a diagnosis?
Symptoms of RLS shouldn’t be ignored, dismissed, or put on the back burner. There can be some long-term consequences such as heart disease and depression. And RLS negatively affects people’s quality of life. They pace around the room because they can’t sit still. Many stop driving or flying because they can’t sit for long. Of course, it disrupts the sleep of the person with RLS but it also disrupts the sleep of the bed partner, who may get kicked all night.
Can lifestyle changes reduce symptoms of RLS?
Yes. Sugar, alcohol, tobacco, and caffeine are known to trigger RLS so eliminating or limiting those may help. Moderate exercise seems to be ideal. Sleep disorders such as apnea or insomnia will make RLS worse so treating them is key. Some of my patients find that distractions like doing jigsaw puzzles helps as does anything that stimulates the legs like massage or heat.
What is the best treatment for moderate to severe RLS?
Because RLS is related to an iron deficiency in the brain, we first test for iron in the blood. If levels are low—and in most cases they are—we recommend iron infusions. That treatment hasn’t always been the first choice because we didn’t have definitive data. Now we do and new guidelines recommend iron infusions as the first line of treatment in these patients. In my practice, about a third of patients can be drug-free with an iron infusion and lifestyle changes. Another third still need to take drugs but their symptoms have been reduced after an iron infusion. And the last third doesn’t respond to the iron. Those patients might have a mutation that prevents iron from getting into the brain.
What other medications are used to treat RLS?
The antiseizure drugs pregabalin (Lyrica) and gabapentin can improve sleep and reduce the urge to move the legs. A new wearable nerve stimulator (the Nidra Tonic Motor Activation System) for people with moderate or severe treatment resistant RLS stimulates the peroneal nerve (a major nerve in the lower leg that creates sensation in the foot, toes, and lower leg) through electrical impulses. The device has also been found to reduce symptoms and improve sleep, according to recent studies. For some patients, we use very low doses of opioids. Low doses for long periods of time continue to work without creating dependence or needing to increase the dose, according to data.
Are any medications used to treat RLS considered inappropriate?
For a long time, patients were prescribed dopamine agonists and many still are. The problem with dopamine agonists is that they work very well but when the condition gets worse the dose keeps getting increased. And one of the serious side effects is a lack of impulse control, which can lead to compulsive gambling and shopping and sexual behavior. People are surprised when I tell them the agonists are making their symptoms worse. And withdrawing from dopamine agonists is difficult. I’ve helped many patients through the process and not one regrets going off the drugs.
Who is most at risk for RLS?
Women are more prone to iron deficiency because of menstruation so they develop RLS more often than men. People from northern and western Europe also tend to be at higher risk. Many of my patients’ ancestry is from England, Ireland, and Germany. In the United States, RLS is four times more common among White people than Black people. Some people develop RLS during pregnancy. In most cases it resolves after pregnancy, but if it doesn’t, it may last a lifetime. The book has a chapter devoted to RLS in pregnancy. In addition, any illness or surgery will exacerbate symptoms. RLS may have an inflammatory component so COVID-19 may make it worse as well.
What motivated you to write this book?
I felt there wasn’t enough good information out there. In my own practice, I was seeing too many patients whose symptoms were worse because they had been prescribed inappropriate medication. I wanted to share this knowledge with patients. I also wanted them to know that RLS is a treatable condition and just how dangerous dopamine agonists are. I think the conversational tone of the book and the patient anecdotes make it a relatable resource for patients and their loved ones.
