How I’ve Coped With a Common Sleep Condition Many Doctors Don’t Take Seriously: Restless Legs Syndrome

For two decades I’ve engaged in truly odd behavior to quell a mysterious problem: At night, my legs just won’t settle. Instead, they twitch, jerk, shake, and move, all while my mind and body writhe with exhaustion. I’ve done lunges in the galley of an airplane. I’ve paced back and forth on video conference calls in my home office. I’ve sobbed at night, hours past my planned bedtime, desperate for anything to make it stop. I’ve even punched my quads vigorously in a movie theater, all in an attempt to curb the annoying and uncontrollable urge to move my legs.

After years of bouncing among doctors who didn’t take me seriously, I finally found effective care and a concrete diagnosis for my troubles: restless legs syndrome. For those who’ve never experienced RLS, it may be easy to dismiss what sounds like an exaggerated condition. It’s not life-threatening like heart disease, cancer, or diabetes, after all. But for the 7 to 8 percent of adults with RLS, the effects it has on sleep, sex life, and overall mental health cannot be ignored.

Indeed, the Patient Odyssey Survey II conducted by the Restless Legs Syndrome Foundation in 2022 found RLS significantly impacts health-related quality of life. Crucially, the survey observed that adults with RLS are nearly four times more likely to have depression and suicidal thoughts compared to the general adult U.S. population.

I’ve often felt frustrated by the disparate reactions I’ve gotten when telling someone I have RLS. I’m either met with a dismissive comment like, “that can’t be a real thing,” or a vigorous, wide-eyed head nod, often with tears, because the person is desperate to talk to someone who intimately knows their struggle.

A confounding state of unrest

Once I started talking openly about my RLS, I quickly realized I was in an rarefied, if undesired, category of people who knew the heartbreak of living with this nebulous condition.

Restless legs, sometimes called Willis-Ekbom Disease, straddles the line between a sleep disorder—because symptoms are often brought on at night when a person is trying to sleep—and a movement disorder, because moving the legs is the only way to relieve the uncomfortable sensations.

The cause is unknown, but it is undoubtedly a neurological condition: “RLS is generated in the brain itself, not the legs,” says Andy Berkowski, MD, double-board-certified neurologist and sleep medicine specialist and founder of ReLACS Health, a sleep clinic dedicated to helping people manage complex sleep conditions.

People with RLS may describe the feeling in their legs a bit differently—as tingling, crawling, burning, itching, or aching, to name a few—but other symptoms are consistent across the board: uncontrolled leg movement, restlessness at night, and an inability to fall or stay asleep.

Interestingly, though, RLS seems to be tied to a person’s circadian rhythm, notes Rochelle Zak, MD, sleep medicine specialist, UCSF professor, and RLS.org Scientific & Medical Advisory Board member. While most people experience symptoms in the evening, extensive travel or sleep changes can shift the timing. On my last trip to Europe, for example, I took an overnight flight, and the sleep deprivation combined with the time change caused my RLS symptoms to start midday, whereas at home my normal restlessness begins around 8 p.m.

“Sleep disorders like RLS are often excluded from medical school curricula. The lack of awareness and education creates a perception that RLS is not a ‘real’ medical condition.” —Karla Dzienkowski, RN, BSN

Why don’t some doctors take RLS seriously?

My RLS symptoms became unbearable in my early 20s, around the same time I was diagnosed with type 1 diabetes. Back then, I simply couldn’t get my primary care doctor to even have a conversation about my RLS symptoms, as she insisted we only talk about treating the presenting autoimmune disorder. That, of course, desperately needed attention, but so did the fact that the sensations in my legs were keeping me awake six to seven nights per week.

My experience isn’t unique, unfortunately, and the reason is twofold: “Sleep disorders like RLS are often excluded from medical school curricula, leading to a lack of exposure [among physicians] to diagnostic criteria and symptom recognition,” says Karla Dzienkowski, RN, BSN, a nurse and the executive director of the Restless Legs Syndrome Foundation. “The lack of awareness and education creates a perception that RLS is not a ‘real’ medical condition, thus stigmatizing the condition.”

What’s more: Dzienkowski says symptom variability—the fact that some people with RLS have mild or occasional versus nightly symptoms—can lead health care professionals to under-diagnose, misdiagnose, or further delay treatment of the condition.

Berkowski adds that our health care system is set up for procedure-based care, and there is neither a diagnostic nor procedure-based code for RLS. In addition, doctors who are presented with a patient addressing myriad issues in one visit are likely to deprioritize RLS treatment in favor of life-threatening problems that require imminent intervention (read: my diabetes).

The result: It’s estimated that up to 15 percent of the population has RLS, but far fewer actually receive a diagnosis and treatment plan.

New management guidelines and emerging treatments are sparking hope

There’s no cure for RLS, so usually doctors who do diagnose and treat the condition often take a multi-step approach to managing symptoms—one that addresses substances, behaviors, and nutritional deficiencies. Dr. Zak says to first “try to reduce or eliminate caffeine, nicotine, and alcohol” and monitor whether those substances trigger RLS symptoms. She also warns that some over-the-counter medications, like antihistamines (think: Benadryl, Unisom, Zyrtec), can exacerbate symptoms.

Next, she usually looks at a person’s exercise habits and tries to help them find the right balance—too much or too little exercise can make RLS worse, but the exact amount varies by person.

Maintaining good, consistent sleep habits is also crucial, as poor quality or lack of sleep has been linked to the onset of restlessness.

Berkowski says once substances and behaviors are addressed, modest doses of drugs like gabapentin or pregabalin can help alleviate twitchiness. Dr. Zak also points to a 2024 study in CNS Drugs¹ supporting the therapeutic efficacy of an insomnia drug called suvorexant.

Magnesium supplements have also been studied in people with RLS, though according to John Winkelman, MD, PhD, Massachusetts General Hospital’s chief of the Sleep Disorders Clinical Research Program, “there is no good evidence of efficacy…but it can’t hurt.”

Dr. Winkelman says he also sometimes prescribes iron infusions for his patients with RLS. Many doctors I spoke to say there is a correlation between RLS and iron deficiency in the brain, which is unfortunately difficult to measure. Instead, many professionals will check blood iron levels, as that’s the closest test available. For the lucky ones, a 15-minute IV infusion of iron can lead to a lifetime of relief, but it doesn’t work for everyone, and it may not be covered by insurance.

Opioids have been specified as a last-line of defense for those with severe RLS symptoms. Dr. Winkelman established a national RLS opioid registry with over 500 participants to track whether very low doses indicated relief. He reported that after six years, 20 percent of people reduced their dosage, 30 percent stayed the same, and 50 percent needed a slightly higher dose to experience relief. With the opioid epidemic in the U.S., many doctors may not be willing to prescribe these meds for fear they’ll be abused.

Last month, the American Academy of Sleep Medicine² published the most sweeping change to its guidelines for RLS treatment in 12 years. These guidelines clarify a critical problem with popular FDA-approved “dopamine agonist” drugs like Mirapex and Requip, which were touted in mass advertising campaigns to relieve RLS.

Dr. Winkelman explains that in these new guidelines, dopamine agonists are no longer recommended for RLS treatment due to “high rates of augmentation with long-term use.” To put it more plainly, these drugs are highly effective to reduce RLS symptoms in the short term, but with long-term use, people actually experience worse symptoms, and in some, RLS has spread to other parts of the body, including the arms and torso. Further complicating this issue is the fact that many people become chemically dependent on dopamine agonists, and weaning from them requires professional supervision.

Beyond medications, an emerging treatment for RLS is a peroneal nerve stimulation device called Nidra, which straps on below the knee and vibrates in 30-minute intervals, theoretically tricking the body into thinking the leg is moving and therefore sending a signal to the brain that quiets the restless urge. The device is FDA-approved and requires a prescription from your doctor. It’s not yet widely available, but many in the RLS community are hopeful about the device’s potential.

Advocating for better care

Dr. Berkowski recommends making RLS the chief purpose of your appointment with your primary care physician. “If you present several issues, RLS will get deprioritized, as it isn’t life-threatening and diagnostic procedure is lacking,” he says. He also recommends downloading a copy of the 2024 AASM draft guidelines and bringing it to your doctor for discussion.

If after multiple discussions your doctor isn’t taking you seriously, Dr. Winkelman agrees with me that it’s “time for a new doctor.” I had to visit several primary care physicians before I found one who patiently worked with me to treat my RLS in conjunction with my type 1 diabetes.

The most powerful tool I’ve used on my quest for RLS relief was knowledge. I read as much as I can about RLS from trusted experts, and I was thrilled to see a new book on the topic become available last month: In Navigating Life with Restless Legs Syndrome, author Andrew R. Spector, MD, an associate professor of neurology at Duke University School of Medicine, takes a deep and thoughtful look at the condition and outlines the most up-to-date treatment approaches, including both medications and non-drug options. Throughout, Dr. Spector also weaves in stories about people living with RLS and their individual paths to finding relief.

To that last point, there’s so much we (that is, people who live with RLS) can learn from one another. Over the years, I’ve sought out online support groups to understand what has worked for other people with the condition. Sometimes the advice I found online was ludicrous (a bar of soap under my fitted sheet did nothing for me), but the forums have helped me express my frustration and feel less isolated. And for people with RLS, validation alone can be an empowering tool on the road to effective relief.

Finally, prominent leaders in the RLS community are also working to increase providers’ ability to treat it. For example, Dr. Winkelman established a free, non-commercial online forum, RLS Curbside, for health care providers to discuss treating the disorder. So change may be on the horizon.

—reviewed by Angela Holliday-Bell, MD