The Restless Legs Syndrome Self-Care Tips That Work for Me

For 20 years I’ve engaged in really odd conduct to quell a mysterious downside: At night time, my legs simply gained’t settle. As an alternative, they twitch, jerk, shake, and transfer, all whereas my thoughts and physique writhe with exhaustion. I’ve performed lunges within the galley of an airplane. I’ve paced backwards and forwards on video convention calls in my house workplace. I’ve sobbed at night time, hours previous my deliberate bedtime, determined for something to make it cease. I’ve even punched my quads vigorously in a movie show, all in an try to curb the annoying and uncontrollable urge to maneuver my legs.

After years of bouncing amongst docs who didn’t take me significantly, I lastly discovered efficient care and a concrete prognosis for my troubles: stressed legs syndrome. For many who’ve by no means skilled RLS, it might be straightforward to dismiss what appears like an exaggerated situation. It’s not life-threatening like coronary heart illness, most cancers, or diabetes, in spite of everything. However for the 7 to 8 percent of adults with RLS, the consequences it has on sleep, intercourse life, and general psychological well being can’t be ignored.

Certainly, the Patient Odyssey Survey II performed by the Restless Legs Syndrome Foundation in 2022 discovered RLS considerably impacts health-related high quality of life. Crucially, the survey noticed that adults with RLS are practically 4 instances extra more likely to have despair and suicidal ideas in comparison with the overall grownup U.S. inhabitants.

I’ve typically felt annoyed by the disparate reactions I’ve gotten when telling somebody I’ve RLS. I’m both met with a dismissive remark like, “that may’t be an actual factor,” or a vigorous, wide-eyed head nod, typically with tears, as a result of the particular person is determined to speak to somebody who intimately is aware of their battle.

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A confounding state of unrest

As soon as I began speaking brazenly about my RLS, I rapidly realized I used to be in an rarefied, if undesired, class of people that knew the heartbreak of dwelling with this nebulous situation.

Restless legs, typically referred to as Willis-Ekbom Illness, straddles the road between a sleep problem—as a result of signs are sometimes introduced on at night time when an individual is attempting to sleep—and a motion dysfunction, as a result of transferring the legs is the one technique to relieve the uncomfortable sensations.

The trigger is unknown, however it’s undoubtedly a neurological situation: “RLS is generated within the mind itself, not the legs,” says Andy Berkowski, MD, double-board-certified neurologist and sleep drugs specialist and founding father of ReLACS Well being, a sleep clinic devoted to serving to folks handle advanced sleep situations.

Individuals with RLS could describe the sensation of their legs a bit otherwise—as tingling, crawling, burning, itching, or aching, to call just a few—however different signs are constant throughout the board: uncontrolled leg motion, restlessness at night time, and an incapacity to fall or keep asleep.

Apparently, although, RLS appears to be tied to an individual’s circadian rhythm, notes Rochelle Zak, MD, sleep drugs specialist, UCSF professor, and RLS.org Scientific & Medical Advisory Board member. Whereas most individuals expertise signs within the night, in depth journey or sleep adjustments can shift the timing. On my final journey to Europe, for instance, I took an in a single day flight, and the sleep deprivation mixed with the time change induced my RLS signs to begin noon, whereas at house my regular restlessness begins round 8 p.m.

“Sleep issues like RLS are sometimes excluded from medical faculty curricula. The ignorance and schooling creates a notion that RLS shouldn’t be a ‘actual’ medical situation.” —Karla Dzienkowski, RN, BSN

Why don’t some docs take RLS significantly?

My RLS signs turned insufferable in my early 20s, across the similar time I used to be recognized with sort 1 diabetes. Again then, I merely couldn’t get my major care physician to actually have a dialog about my RLS signs, as she insisted we solely speak about treating the presenting autoimmune dysfunction. That, in fact, desperately wanted consideration, however so did the truth that the sensations in my legs have been conserving me awake six to seven nights per week.

My expertise isn’t distinctive, sadly, and the reason being twofold: “Sleep issues like RLS are sometimes excluded from medical faculty curricula, resulting in an absence of publicity [among physicians] to diagnostic standards and symptom recognition,” says Karla Dzienkowski, RN, BSN, a nurse and the manager director of the Stressed Legs Syndrome Basis. “The ignorance and schooling creates a notion that RLS shouldn’t be a ‘actual’ medical situation, thus stigmatizing the situation.”

What’s extra: Dzienkowski says symptom variability—the truth that some folks with RLS have delicate or occasional versus nightly signs—can lead well being care professionals to under-diagnose, misdiagnose, or additional delay remedy of the situation.

Berkowski provides that our well being care system is about up for procedure-based care, and there may be neither a diagnostic nor procedure-based code for RLS. As well as, docs who’re offered with a affected person addressing myriad points in a single go to are more likely to deprioritize RLS remedy in favor of life-threatening issues that require imminent intervention (learn: my diabetes).

The outcome: It’s estimated that as much as 15 percent of the inhabitants has RLS, however far fewer truly obtain a prognosis and remedy plan.

New administration tips and rising remedies are sparking hope

There’s no remedy for RLS, so normally docs who do diagnose and deal with the situation typically take a multi-step method to managing signs—one which addresses substances, behaviors, and dietary deficiencies. Dr. Zak says to first “attempt to scale back or eradicate caffeine, nicotine, and alcohol” and monitor whether or not these substances set off RLS signs. She additionally warns that some over-the-counter drugs, like antihistamines (assume: Benadryl, Unisom, Zyrtec), can exacerbate signs.

Subsequent, she normally appears at an individual’s train habits and tries to assist them discover the precise stability—an excessive amount of or too little train could make RLS worse, however the actual quantity varies by particular person.

Sustaining good, constant sleep habits can also be essential, as poor high quality or lack of sleep has been linked to the onset of restlessness.

Berkowski says as soon as substances and behaviors are addressed, modest doses of medication like gabapentin or pregabalin will help alleviate twitchiness. Dr. Zak additionally factors to a 2024 examine in CNS Drugs supporting the therapeutic efficacy of an insomnia drug referred to as suvorexant.

Magnesium dietary supplements have additionally been studied in folks with RLS, although in line with John Winkelman, MD, PhD, Massachusetts Common Hospital’s chief of the Sleep Issues Scientific Analysis Program, “there isn’t a good proof of efficacy…however it could actually’t harm.”

Dr. Winkelman says he additionally typically prescribes iron infusions for his sufferers with RLS. Many docs I spoke to say there’s a correlation between RLS and iron deficiency within the mind, which is sadly troublesome to measure. As an alternative, many professionals will verify blood iron ranges, as that’s the closest take a look at out there. For the fortunate ones, a 15-minute IV infusion of iron can result in a lifetime of reduction, but it surely doesn’t work for everybody, and it is probably not lined by insurance coverage.

Opioids have been specified as a last-line of protection for these with extreme RLS signs. Dr. Winkelman established a nationwide RLS opioid registry with over 500 members to trace whether or not very low doses indicated reduction. He reported that after six years, 20 p.c of individuals lowered their dosage, 30 p.c stayed the identical, and 50 p.c wanted a barely larger dose to expertise reduction. With the opioid epidemic within the U.S., many docs is probably not prepared to prescribe these meds for concern they’ll be abused.

Final month, the American Academy of Sleep Medicine² printed probably the most sweeping change to its tips for RLS remedy in 12 years. These tips make clear a essential downside with common FDA-approved “dopamine agonist” medicine like Mirapex and Requip, which have been touted in mass promoting campaigns to alleviate RLS.

Dr. Winkelman explains that in these new tips, dopamine agonists are now not really useful for RLS remedy as a consequence of “excessive charges of augmentation with long-term use.” To place it extra plainly, these medicine are extremely efficient to scale back RLS signs within the quick time period, however with long-term use, folks truly expertise worse signs, and in some, RLS has unfold to different components of the physique, together with the arms and torso. Additional complicating this problem is the truth that many individuals turn into chemically depending on dopamine agonists, and weaning from them requires skilled supervision.

Past drugs, an rising remedy for RLS is a peroneal nerve stimulation system referred to as Nidra, which straps on beneath the knee and vibrates in 30-minute intervals, theoretically tricking the physique into pondering the leg is transferring and due to this fact sending a sign to the mind that quiets the stressed urge. The system is FDA-approved and requires a prescription out of your physician. It’s not but broadly out there, however many within the RLS neighborhood are hopeful concerning the system’s potential.

Advocating for higher care

Dr. Berkowski recommends making RLS the chief objective of your appointment along with your major care doctor. “Should you current a number of points, RLS will get deprioritized, because it isn’t life-threatening and diagnostic process is missing,” he says. He additionally recommends downloading a duplicate of the 2024 AASM draft guidelines and bringing it to your physician for dialogue.

If after a number of discussions your physician isn’t taking you significantly, Dr. Winkelman agrees with me that it’s “time for a brand new physician.” I needed to go to a number of major care physicians earlier than I discovered one who patiently labored with me to deal with my RLS along with my sort 1 diabetes.

Probably the most highly effective instrument I’ve used on my quest for RLS reduction was data. I learn as a lot as I can about RLS from trusted consultants, and I used to be thrilled to see a brand new guide on the subject turn into out there final month: In Navigating Life with Restless Legs Syndrome, writer Andrew R. Spector, MD, an affiliate professor of neurology at Duke College Faculty of Medication, takes a deep and considerate have a look at the situation and descriptions probably the most up-to-date remedy approaches, together with each drugs and non-drug choices. All through, Dr. Spector additionally weaves in tales about folks dwelling with RLS and their particular person paths to discovering reduction.

To that final level, there’s a lot we (that’s, individuals who stay with RLS) can be taught from each other. Through the years, I’ve sought out on-line assist teams to know what has labored for different folks with the situation. Typically the recommendation I discovered on-line was ludicrous (a bar of cleaning soap underneath my fitted sheet did nothing for me), however the boards have helped me specific my frustration and really feel much less remoted. And for folks with RLS, validation alone might be an empowering instrument on the highway to efficient reduction.

Lastly, distinguished leaders within the RLS neighborhood are additionally working to extend suppliers’ potential to deal with it. For instance, Dr. Winkelman established a free, non-commercial on-line discussion board, RLS Curbside, for well being care suppliers to debate treating the dysfunction. So change could also be on the horizon.