Restless legs syndrome: A common sleep disorder you may never have heard of

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Behavioural changes and medication could help if you have restless legs syndrome, experts say. AndreyPopov/iStockphoto/Getty Images/File via CNN Newsource
Karla Dzienkowski's daughter was 11 when she started coming into her mom's room at night saying she couldn't fall asleep because of a stabbing feeling in her legs. She had to walk to make it stop.
The preteen became cranky and tired. Her grades started to slip, and she even fell asleep on a bench during a family trip to an amusement park, Dzienkowski said.
It took three years, but Dzienkowski's family finally got an explanation for the girl's condition: restless legs syndrome.
One study estimates 4% to 29% of adults in Western industrialized countries have restless legs syndrome. It is a condition that too few people can recognize in themselves, and many doctors don't know how to manage properly, said Dzienkowski, a nurse who is executive director of the Restless Legs Syndrome Foundation.
Here is what experts want you to know about restless legs syndrome.
What is restless legs syndrome?
'Restless legs syndrome is a neurological disorder that is characterized by a need to move that is oftentimes associated with an uncomfortable feeling,' said Dr. John Winkelman, chief of the sleep disorders clinical research program at Massachusetts General Hospital and professor of psychiatry at Harvard Medical School.
The uncomfortable feeling — described as crawling, aching, tingling or throbbing — is often in the legs and sometimes the arms, he added.
Restlessness frequently happens when people with the condition are sitting or lying down, and it is relieved with movement, Winkelman said.
Symptoms are more likely to occur when a person is at rest, most often at night, and because the syndrome interferes with sleep, it is classified as a sleep disorder, Winkelman said.
In moderate to severe cases, people experience restless legs syndrome several times a week, and in the most extreme cases, symptoms can delay sleep for several hours, said Dr. Brian Koo, associate professor of neurology at Yale School of Medicine and director of the Yale Center for Restless Legs Syndrome.
Who gets it?
Two strong components play a role in who gets restless legs syndrome: genetics and iron levels.
Restless legs syndrome often runs in families, and genetic markers make up about 20% of the prediction of who will get it, Winkelman said.
Those with an iron deficiency are also more likely to get restless legs syndrome, including people who are pregnant, on dialysis, who are menstruating, who have anemia, or who are vegetarians, Winkelman said.
Those on selective serotonin reuptake inhibitor antidepressants may also be vulnerable to restless legs syndrome, he added.
The condition is twice as common in women as in men and much more common as people get older, Winkelman said.
However, as Dzienkowski learned, children can have restless legs syndrome, too.
Treatment with lifestyle changes
To treat restless legs syndrome, a good first step is to look at what might be making the condition worse, Winkelman said.
Alcohol, other medications and simple sugars may contribute to symptoms, Koo said.
If iron is low — or even borderline low — oral iron supplements or intravenous iron infusions may help, Winkelman added.
Dzienkowski also recommends having a 'bag of tricks' to manage symptoms, such as hot or cold packs, massages, walks or some mind-stimulating activity.
'For some reason … if you keep your mind engaged, it helps to keep symptoms at bay,' she said.
Medications that can help
There are medications that help if lifestyle changes and iron supplementation don't work.
Many doctors will start with a class of drugs called alpha2-delta ligands, such as gabapentin or pregabalin, Koo said.
For a long time, dopamine agonists were the first line of medications. But they are now prescribed infrequently because they can worsen restless legs syndrome over time, Winkelman added.
The medications for the most severe cases are low-dose, long-acting opioid medications, Koo said.
Talk to a doctor
If you have discomfort that motivates you to move your legs at rest — particularly if doing so disturbs your sleep — talk to a doctor, Dzienkowski said.
Not all medical professionals are well versed in restless legs syndrome, so asking for a referral to a sleep specialist may be helpful, she said. You should also get your lab work done, especially an iron panel with ferritin, a blood test that looks at how much iron your body has and how available it is for use, Dzienkowski said.
'The sooner you do it, the better, because you're just delaying diagnosis and treatment, which can be detrimental to your life,' she said. 'You don't realize that that sleepiness that you're feeling at work or the crankiness or you're not wanting to get out and do things could be the RLS bleeding into your daytime. … At least go have that conversation.'