Jean Smith, whose name has been changed to protect her privacy, began to experience symptoms of what she later learned was restless legs syndrome (RLS) when she was 29 years old and pregnant.
She found herself unable to sleep because of sensations like itches that couldn’t be scratched and urges to continually get up and move. When she got pregnant with her second child, the symptoms worsened. After the birth, the symptoms became almost unbearable and spread to her arms, hips and shoulders, making her miserable.
Smith would move around, walk and take baths in the middle of the night when she couldn’t sleep, which was most of the time, and she tried many over-the-counter medications to try to relieve the discomfort. None of it worked. Some of the medications made the symptoms worse.
Eventually, she became seriously sleep-deprived and had suicidal thoughts.
“It was like slow-drip water torture,” she says.
After much research, she found Dr. Mark Buchfuhrer, a sleep specialist affiliated with the Sleep Medicine Center at Stanford Health, who helped treat her. She is better, but her life still revolves around RLS.
“While there is a lack of recognition of the seriousness of RLS and a lack of expertise in diagnosing and addressing it,” says Dr. John Winkelman, chief of the sleep disorders clinical research program at Mass General in Boston, “there are lots of good treatments and effective approaches to managing the disorder and there is reason to be hopeful.”
[SEE: Ranking the Most Painful Medical Conditions]
What Is RLS?
RLS, also known as Willis-Ekbom disease, is a complex neurological condition that affects about 7% to 8% of the population.
It’s characterized by an uncomfortable, irresistible urge to get up and move your legs, especially after sitting or lying down.
The sensation has been described as:
— Crawling
— Creeping
— Throbbing
— Aching
— Itching
RLS can begin at any age, but it tends to affect older people more than young people and women twice as much as men.
There is no cure, but symptoms can be partly or completely relieved with lifestyle change. About 2% of all adults who have clinically significant RLS have severe symptoms that seriously affect their quality of life and require medication to manage.
“People suffer tremendously from RLS, a real condition that often isn’t taken seriously but needs to be,” says Dr. Mark Wu, professor of neurology at Johns Hopkins School of Medicine in Baltimore.
[READ: What Not to Say to People With Chronic Pain — and What to Say Instead]
Lifestyle Habits to Manage RLS
If symptoms of RLS are mild and infrequent, some of the following lifestyle changes may help.
— Get moving. Certain exercises, such as walking or stretching, can help alleviate symptoms, but too much or too little can also make the condition worse.
— Avoid triggers. Avoid caffeine, alcohol and some over-the-counter medications, such as antihistamines, that can worsen symptoms.
— Reduce stress. Calming exercises — such as yoga, meditation and grounding — as well as medications can relieve stress and, therefore, reduce RLS symptoms.
— Manage underlying conditions. Symptoms sometimes go away after treating underlying conditions, such as iron deficiency.
— Check medications. Some medications can worsen symptoms, and discontinuing them may help. For example, antidepressants, high blood pressure medications, nausea medications, and cold medicine and allergy medications may trigger RLS symptoms.
— Try soothing techniques. Hot showers, baths and compresses can ease symptoms.
— Make dietary changes. Some food — such as caffeine, chocolate and sugar — can exacerbate symptoms because caffeine and chocolates are stimulants and can interrupt sleep. Sugar causes inflammation that can also disrupt sleep.
When symptoms are serious and get in the way of your functioning, you may need to see a specialist and begin taking medications as treatment.
About one-third of those with RLS have severe symptoms that affect quality of life and require medicine to manage.
[See: Mind-Blowing Benefits of Exercise.]
Medications to Treat RLS
1. Iron supplementation
Iron supplementation relieves symptoms in about half of RLS patients with low iron levels.
New January 2025 American Academy of Sleep Medicine guidelines for RLS recommend assessing iron levels in everyone with RLS, as RLS is related to brain iron deficiency. Winkelman says it’s not easy to determine the levels of iron in the brain and suggests that if iron levels are low, increasing iron orally or by IV infusion may relieve symptoms. (At certain levels, iron won’t be absorbed orally, and an intravenous drip will have to be used.)
2. Nerve pain and seizure medications
For moderate to severe RLS, nerve pain and seizure medications may help.
These medications include:
— Gabapentin (Neurontin)
— Gabapentin enacarbil (Horizant)
— Pregabalin (Lyrica)
The medications for nerve pain and seizures can affect calcium channels in the nervous system that regulate the release of neurotransmitters that calm overactive signals associated with RLS.
Because these drugs often have side effects — such as dizziness, unsteadiness, brain fog and weight gain — a doctor will start you on a low dose and increase it gradually to determine at what level symptoms can be managed while minimizing the side effects.
Winkelman says clinical trial data shows that two-thirds of patients respond to gabapentinoids.
3. Dopamine agonists
Dopamine agonists are medications that help stimulate the brain’s dopamine receptors, tricking them into thinking they’re receiving dopamine.
Dopamine agonists include:
— Rotigotine (Neupro)
— Pramipexole (Mirapex, Mirapex ER)
— Ropinirole (Requip)
Once the standard of care for moderate to severe RLS, these drugs are initially very effective, with symptoms vanishing within days.
However, taking these medications has been shown to make symptoms start increasingly early, occur more quickly and often cause discomfort to travel from the legs to the arms, shoulders and the face.
The worsening of symptom intensity and duration is known as augmentation.
“Increasing dopamine agonist doses in RLS patients is like pouring gasoline on a fire,” Winkelman says. “The immediate benefits are outweighed by long-term side effects.”
Dopamine agonists can still be used for selective, short-term treatments but are no longer the go-to medications for RLS.
4. Opioids
For RLS patients who don’t respond to other approaches, opioids may help.
These include:
— Methadone
— Buprenorphine
— Oxycodone
— Hydromorphone
— Morphine sulfate
However, opioids for RLS treatment are prescribed at 10% lower dose than what is usually prescribed for chronic pain patients.
“For severe RLS, opioids for treatment should be high on the list,” Winkelman says, “because 10 hours a day of severe symptoms is debilitating and exhausting.”
5. Nidra bands
Nidra bands are noninvasive, wearable devices that were cleared for use by the FDA in 2023 to treat moderate to severe RLS symptoms. Placed under the knees, these devices use electrodes that stimulate the nerves in your knees, causing you to think you’re walking when you’re sitting or lying down.
Bands can be worn to bed or during the day if symptoms are severe.
Nidra bands can be used for 30 minutes of relief when you’re having symptoms of RLS.
Bottom Line
RLS is a very real, very serious and common condition that causes tremendous suffering for those who have it.
When symptoms aren’t severe, behavioral changes — like exercising, eliminating triggers and using soothing techniques — often help. When symptoms are serious and unrelenting, medications are used to ease discomfort.
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How to Treat Restless Legs Syndrome originally appeared on usnews.com
