When night falls and many people fall into a peaceful slumber, a peculiar torment may take hold of others: restless leg syndrome. This uncomfortable sensation can rob many of rest, leaving them weary the following day. This silent thief of sleep, known for its incessant twitching and relentless urge to move, is a condition that is baffling and surprisingly common. Knowing what to expect with restless leg syndrome and how to find relief is key to achieving restful slumber.
Restless leg syndrome—also called Willis-Ekbom disease—causes significant symptoms in about 3% of people in the U.S. Women are more likely to have restless leg syndrome than men. And while most symptoms develop among people 45 or older, children can also have restless leg syndrome.
The AMA’s What Doctors Wish Patients Knew™ series gives physicians a platform to share what they want patients to understand about today’s health care headlines.
In this installment, Matthew Daniel Epstein, MD, discusses what patients need to know about restless leg syndrome. He is a sleep medicine physician and associate director of the Atlantic Health Sleep Centers in Morristown, New Jersey.
Atlantic Health System is a member of the AMA Health System Program, which provides enterprise solutions to equip leadership, physicians and care teams with resources to help drive the future of medicine.
It feels like you need to move
“It’s a pure, subjective complaint that people feel and it’s very uncomfortable.
“It’s described as a crawling sensation in the muscles and a restlessness. It’s not a cramp. It’s not a pain. It’s a sensation that you need to stretch or move or get up and walk around,” he added, noting “it’s more noticeable with inactivity and it’s often relieved with stretching or movement.”
Additionally, restless leg syndrome “usually happens before you sleep, usually later in the day or in the evening,” Dr. Epstein said. “Some people with severe cases can have it all day and sometimes it occurs overnight, but usually it’s in the earlier part of the night.”
There is no test for diagnosis
Restless leg syndrome is “a symptom that people experience, so it’s based on history,” Dr. Epstein said. “It’s not something that you can measure or do a blood test for or imaging or anything like that.”
“A sleep study doesn’t help you with it either,” he said. But additional testing can be ordered to rule out other conditions that can cause or worsen symptoms of restless leg syndrome.
Iron deficiency is a main cause
Restless leg syndrome “can affect anyone, but one of the causes tends to be iron deficiency,” Dr. Epstein said, noting “women who are of childbearing age is one common age group, but then anyone can get it. Men can get it. Older people can get it.”
“If you’re a woman who’s a little bit iron deficient from menstrual cycles or pregnancy, that might precipitate restless leg syndrome or if you’re iron deficient for any reason,” he said. “Sometimes it’s not related to iron, but that’s one subgroup of people with restless legs where it’s a known contributing factor.”
Dr. Epstein said that, in his experience, iron deficiency is the cause about half the time. For example, he said, “I might see someone and ask, ‘How long have you had this?’ And they will say, ‘About a year and a half,’ or some timeframe.”
“Then I go through their history. They may have had colon surgery or some orthopaedic procedure and then I look at their blood work and see that their hemoglobin dropped way down after a surgery they had 15 months ago,” he said. “Someone like that—you can really pinpoint it, and then you can bet on it that it’s going to be an iron deficiency problem.”
It is under- or misdiagnosed
“Having restless leg syndrome properly identified is an important thing, because it can be either undiagnosed or misdiagnosed as a different condition,” Dr. Epstein said. “Conditions that can cause it are pregnancy, certain vitamin deficiencies, kidney problems and iron deficiency.”
Beyond that, it is about “looking carefully for medications that could also contribute to restless leg syndrome,” he said. “Medications, especially selective serotonin reuptake inhibitors,” or SSRIs, are associated with an increased risk of restless leg syndrome. SSRIs is a class of drugs that are often used to treat depression, anxiety and other psychological conditions.
“Sometimes, over-the-counter medicines, alcohol and sleep deprivation can also” exacerbate restless leg syndrome, Dr. Epstein said.
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Sleep can be interrupted
“For some people, restless leg syndrome can be very intermittent,” Dr. Epstein said. But for other people, “it’s much more constant and if it’s more frequent, it can really interfere with sleep.”
If restless leg syndrome is severe, it can also “interfere with sleep and even daytime functioning and quality of life,” he said.
Medication is the first line of treatment
“The medications that are now recommended as the first line treatment of restless leg syndrome modulate neurotransmitters,” Dr. Epstein said. “The common ones are neurontin or gabapentin.”
“These medications are effective, but sometimes we have to add other classes of medications to help,” he said, noting that some medications become less effective over time, which is why switching to another therapy may be helpful.
Additionally, “the medications have some potential side effects. One of them is known because they work based on dopamine and rewards,” Dr. Epstein said. “So, they can cause compulsive behavior and gambling and things like that. I have had patients that have had those side effects,” which is why it is important to modify medications as treatment goes on.
"Recent treatment guidelines no longer recommend restless leg syndrome medications that work via Dopamine,” he said. “This is because these medications have been recognized to lead to augmentation, where the symptoms of restless leg syndrome start to come on earlier and become more refractory to treatment over time."
Try massaging the legs
“There are some other treatments such as massaging the legs or soaking them in water for relief,” Dr. Epstein said, noting there are “some new things on the market for treating restless leg syndrome that are not that well proven, but there are additional therapies that may help.”
But it is important to consult your physician first before trying any other treatment options, he said.
Pay attention to lifestyle changes
If symptoms of restless leg syndrome are mild and infrequent, lifestyle changes may be beneficial.
It’s about “looking at any potential contributing or causative factors such as medication, poor sleep, alcohol, lack of physical activity and exercise,” Dr. Epstein said. “All those things can be helpful.”
A thorough evaluation is key
“People don’t really know much about restless leg syndrome—and people who have been diagnosed obviously know about it, but a lot of primary care doctors and referring doctors aren’t so familiar with it either,” Dr. Epstein said. “It’s really a lesser-known condition and people might suffer with it for many years before they’re finally told what it is.”
He added that he’s had patients with “restless leg syndrome for many years, decades even, and they just might not necessarily know who to ask or if they mention it to their doctor, the doctor doesn’t really know what to do about it,” Dr. Epstein said, noting “they might misdiagnose it and think it’s a leg cramp or something like that.
That is why it is important to “get a good, thorough evaluation by your doctor or a sleep medicine physician,” he said. That means having “your appropriate blood work checked because if iron deficiency is a factor, then iron can be extremely effective and eliminate the condition together.”
