You have probably had nights where you struggled to sleep because you couldn’t get comfortable. You tossed and turned, and maybe your partner said you kicked and flailed in your sleep. A night like this might have you wondering if you have restless legs syndrome.
“Sometimes people are restless sleepers, or maybe they’re uncomfortable because one of their joints hurts and they’re in pain,” says UNC Health neurologist and sleep medicine physician Nathan Walker, MD. “For restless legs syndrome, the uncontrollable urge to move your legs is so strong that it’s hard to sleep. People really suffer because it can be so uncomfortable.”
Dr. Walker says restless legs syndrome is more common than you may think, affecting 7 percent of adults globally (while it can occur in children, it’s more common in adults). He explains what you need to know if you think you might have this condition.
How Restless Legs Syndrome Feels
Restless legs syndrome tends to happen in the evening and when you’re in a reclined position. That’s why people usually experience it as they’re trying to go to bed, but you might also feel it happening when you’re lying on a couch or putting your feet up in a recliner.
The feeling of restless legs syndrome can vary from person to person, but the sensation tends to be intense.
“Some people describe it as something creeping or crawling on their skin, while others describe pain in the legs, like pins and needles,” Dr. Walker says. “Some may have a hard time explaining what they feel, but what is universal is the urge to move your legs. You have to move them; you feel that if you stay still, you will go insane.”
Wiggling the legs, standing or walking around can relieve the urge and, in some cases, that is enough. But sometimes, people have to stand or walk for hours, because as soon as they lie down, they again feel the need to move.
“When it lasts for hours, people really struggle with sleep because it’s so uncomfortable,” Dr. Walker says. “You have to keep moving, so some people might be awake until 2 or 3 in the morning.”
Some people with restless legs syndrome feel it every night; others only now and then. While this feeling can affect other parts of the body, such as the arms, Dr. Walker says it’s most common in the legs.
What Causes Restless Legs Syndrome?
Dr. Walker says it’s unclear what causes restless legs syndrome or why it gets worse for some people but not others. There is likely a genetic factor, as the condition tends to run in families, and it likely involves an imbalance of the neurotransmitter dopamine, which helps to control muscle movement.
Restless legs syndrome may happen in combination with some other conditions, including Parkinson’s disease, spinal cord conditions, peripheral neuropathy and iron deficiency.
Some women experience restless legs syndrome during pregnancy, perhaps due to hormonal shifts, deficiencies in iron or folate, or changes in sleep. Fortunately, most of the time it goes away once the pregnancy is over.
If you have restless legs syndrome, you likely also have periodic limb movements of sleep, marked by involuntary twitching or jerking of the legs or arms during sleep. Not everyone with periodic limb movements has restless legs syndrome, but it can also affect your ability to feel well-rested.
“Some people may realize they’ve had a few nights of restless legs syndrome here and there,” Dr. Walker says. “If it doesn’t bother you in the long-term, don’t worry—there’s nothing inherently harmful and it’s not a harbinger of something to come. But if it’s causing distress and interfering with your sleep and quality of life, talk to a doctor. There is treatment available.”
Treatment Options for Restless Legs Syndrome
If you have mild and sporadic instances of restless legs syndrome, lifestyle modifications can help.
“You can avoid triggers like alcohol and caffeine,” Dr. Walker says. “Benadryl (diphenhydramine) is notorious for making it worse.”
Sleep deprivation also can trigger an episode, so try to prioritize a regular sleep schedule.
“Regular exercise helps, but aim for moderate exercise, rather than intense exercise, which can make it worse,” Dr. Walker says. “Stretching before bed or a warm bath can also help.”
Medication is available for more severe cases. The preferred medications are gabapentin and pregabalin—oral anti-seizure drugs that help calm the nerve signals between your brain and legs that trigger the urge to move.
Dr. Walker says the use of these drugs represents a major change in first-line medications for restless legs in the past 10 to 15 years; previously, you might have been prescribed a dopamine agonist first.
“It was discovered that dopamine agonists caused a phenomenon called augmentation,” Dr. Walker says. “You may have initial relief of the symptoms, but then they get worse, so that the urge to move becomes more severe, and the urges start happening earlier in the day. It makes restless legs syndrome harder to treat.”
Your doctor will also check your iron levels with a blood test, because low iron in the cerebrospinal fluid is associated with more severe symptoms. Your iron levels may be normal, but Dr. Walker says that if they fall below a certain range, your doctor may recommend that you take an oral iron supplement with vitamin C, which helps your body absorb iron.
If you’re tired and frustrated with your inability to get a good night’s rest, don’t despair. Most people with restless legs syndrome can find relief through some combination of avoiding triggers and taking medication or iron supplementation.
“This is a distressing phenomenon because it’s so uncomfortable, but you don’t have to suffer,” Dr. Walker says. “Your doctor can help and refer you to a sleep medicine physician if needed. It can get better and be well-controlled.”
If you’re struggling to get quality sleep, talk to your doctor. If you need a doctor, find one near you.