CONDITIONS

What Is Restless Legs Syndrome (RLS)

Restless legs syndrome (RLS), also known as Willis-Ekbom disease, is a disease of the nervous system that can make it harder for you to sit still, especially at night or when you are trying to relax or sleep. If you have RLS, then sitting still may cause unpleasant sensations in your legs or arms, ranging from a mild creeping or crawling feeling to a growing or burning pain, until you get up and move. RLS can disrupt your life and make it hard for you to sleep.

RLS affects 7% to 10% of the U.S. population. 2% to 3% live with severe RLS.

What Causes Restless Legs Syndrome (RLS)

The exact cause of RLS is unknown, although it tends to run in families. About half of the people with RLS have a family member with the disorder. A family link is even more common for people who develop RLS before age 40.

Scientists believe RLS may be caused by a problem with a part of our brain called the basal ganglia circuits. Normally, these circuits use a neurotransmitter known as dopamine to send the signals that tell your body to move. In RLS, the basal ganglia circuits may use dopamine the wrong way, making it hard for you to sit still.

Risk Factors For Restless Legs Syndrome (RLS)

While doctors don’t know exactly what causes RLS, they have identified factors that can raise your risk. These include:

  • Your family history. About half of all people with RLS have a family member with the disease.
  • Being pregnant. Up to 1 in 4 women develop RLS while pregnant. This RLS often goes away within a month after childbirth.
  • Kidney disease. RLS is very common in people being treated with dialysis.
  • Nerve damage from diabetes or other causes.
  • Attention deficit/hyperactivity disorder
  • Anemia or low iron.
  • Some medicines, including antinausea drugs such as metoclopramide (Reglan), antipsychotics like haloperidol (Haldol), and some antihistamines and antidepressants.

Diagnosing Restless Legs Syndrome (RLS)

There is no test for RLS A diagnosis of RLS is based on these four criteria:

  1. You feel a strong urge to move your arms, legs, or torso–and you may feel an unpleasant sensation if you don’t move.
  2. Your symptoms start or worsen when you are sitting, lying down, or resting.
  3. Your symptoms are worse in the night or evening than in the day.
  4. Your symptoms go away, at least for the time being, if you get up and move around.

Your doctor also needs to check for other illnesses that may be the cause of your symptoms.

At your doctor’s visit, your doctor will ask you questions about your symptoms, including when they happen and whether anything triggers symptoms. Your doctor may also ask about your sleep patterns and your family history.. The visit will also include a physical and neurological evaluation. Your doctor may request tests, such as:

  • A blood test to check your iron level
  • An overnight sleep study

Diagnosing RLS can be harder in children, who may not have the vocabulary to describe their symptoms. RLS in kids is sometimes confused for attention deficit disorder or “growing pains.”

Symptoms of Restless Legs Syndrome (RLS)

The main symptom of RLS is an unpleasant feeling in your arms or legs when you sit still. Different people have described this feeling in different ways, and it can be a mild discomfort such as feeling pulled, or it can be an intense painful or burning feeling. This unpleasant feeling goes away when you move the limb, but it may come back again when you rest. The symptoms are often worse at night and when you are sitting or lying down. Very often, people with RLS have another disorder known as periodic limb movement disorder (PLMD), which can cause your legs to move or twitch in your sleep without your knowledge.

Because RLS can disrupt your life and your sleep patterns, some people with RLS may suffer from: 

  • Fatigue
  • Insomnia
  • Distraction
  • Depression

Prognosis

There is no cure for RLS. Unless it starts during pregnancy or is caused by a curable medical condition, RLS is usually a lifelong problem, and symptoms tend to get worse over time. However, RLS doesn’t lead to other neurological disorders, and it probably won’t affect your life expectancy.

Living With Restless Legs Syndrome (RLS)

RLS can be disruptive, and it can get in the way of your life. It may affect your sleep, throw off your concentration, or make it hard for you to travel. However, the choices you make in your life can make it easier to cope with RLS. Some things you can do to ease the burden include: 

  • Talk about your problems. Let friends and family know about your condition and how it affects you. You can also join a support group to talk with people who are going through the same problems.
  • Get up and move. Start and end each day with stretching exercises. And when you need to get up and move, don’t fight it; take a break and move around. You can also get yourself a standing desk, so you don’t have to sit down when you work.
  • Stay occupied. Having something you like thinking about can help a lot.
  • Keep a sleep diary to track your medications and your activities. This can help you and your doctor figure out what makes it easier or harder for you to sleep.

Screening

There is no guideline for routine RLS screening, but doctors have developed questionnaires to help recognize the symptoms. If you think you may have RLS, you can ask your doctor for a screening test, or you can take an online screening test at http://www.willis-ekbom.org/wed-rls-diagnostic-tool

No questionnaire can take the place of a thorough exam by a doctor, but if you’re not sure then screening may be a good place to start.

Prevention

There is no sure way to prevent RLS, but there are some risk factors you can avoid. While it’s not proven that any of these changes will lower your risk, things you can do include:

  • Get plenty of iron. Anemia is associated with RLS. Getting iron through the foods you eat may help you avoid problems. Iron is found in beans, meat, leafy green vegetables, eggs, and whole grains.
  • If you have diabetes, keep your blood sugar under control. Uncontrolled diabetes can damage the nerves in your fingers and toes, which increase your risk of RLS.
  • Talk to your doctor about the medicines you take. Some medicines may increase your risk of RLS, including antinausea drugs such as metoclopramide (Reglan), antipsychotics like haloperidol (Haldol), and some antihistamines and antidepressants.

Common Treatment

Treatment for RLS often starts with proper nutrition and lifestyle measures. To help manage RLS, your doctor may ask you to:

  • Eat a balanced diet, with enough iron
  • Cut out caffeine, and avoid alcohol in the evening
  • Find activities to help you relax
  • Change some medicines you take, if they may cause RLS
  • Practice good sleep hygiene

For many people, lifestyle changes can improve overall health and help get RLS symptoms under control. However, some people still have symptoms after lifestyle changes. If you need medical treatment for RLS, the options include:

  • Dopaminergic agents such as pramipexole (Mirapex) and ropinarole (Requip). These medicines help the brain produce dopamine. Dopaminergic agents are mostly used to treat Parkinson’s disease, but can also be effective against RLS. Dopaminergic agents can be very effective but may cause nausea or vomiting, or dizziness when standing up. Over time, they may lead to worsening of symptoms.
  • Anti-seizure medicines such as gabapentin enacarbil (Horizant). These medicines can reduce the unpleasant symptoms caused by RLS, but they can make you tired or dizzy, or lead to changes in your blood count.
  • Benzodiazepines such as eszopiclone (Lunesta) or zolpidem (Ambien) to help you sleep.
  • Opioids such as oxycodone (Oxycontin) or codeine. Opioids can help relieve even severe symptoms, but they may be addictive and cause other side-effects, such as constipation and respiratory depression.

Talk to your doctor about the best approach to treatment for your RLS.

Complementary and Alternative Treatment

RLS management includes many techniques that are often thought of as alternative medicine. This includes dietary supplements such as: 

  • Iron
  • Folic acid
  • Magnesium
  • Vitamin B complex

Treatment also includes: 

  • Healthy eating
  • Limiting or eliminating alcohol and caffeine
  • Relaxation techniques such as yoga, meditation, and warm baths

Other home remedies that may help some people include:

  • Acupuncture
  • Progressive relaxation
  • Apple cider vinegar
  • Tonic water with quinine, just before bed
  • Keeping a bar of soap in your bed, under the bottom sheet
  • Herbal relaxants, such as kava, valerian, or chamomile tea

Always talk to your doctor about any treatments you plan to use, including herbal and alternative medicines. Some herbal treatments may cause side effects or interact with other medicines you take.

Care Guide

Adjustments to your lifestyle are central to RLS treatment for many people. The primary changes you will need to make may include:

  • Make sure to get enough iron. The best source is from foods, including meat, eggs, beans, and green leafy vegetables. However, if you don’t get enough iron from food, taking supplements can help.
  • Eat a balanced diet overall. Avoid alcohol after 6 p.m., and cut out caffeine altogether.
  • Find activities to help you relax. This may include relaxation techniques such as yoga and meditation. It may also involve hobbies or ways to occupy your mind or distract yourself from your symptoms. Warm baths or massages can also help relax your muscles and relieve your symptoms.
  • Talk to your doctor about any medicines you take for other conditions. A number of medical treatments may cause RLS as a side effect. Your doctor can help identify medications that may be causing you trouble.
  • Practice good sleep hygiene. A sleep diary can help you keep track of factors that may get in the way of getting a good night’s sleep.

Other self-care techniques can also help. For instance: 

  • Use warm or cool packs to reduce symptoms in your limbs
  • Keep your body active. Regular moderate exercise can help, but don’t overdo it. Stretching in the morning and evening is a good start. Talk to your doctor about finding an exercise regimen that works for you.
  • Don’t keep it inside. Talk to friends and family, and consider joining a support group.
  • Move when you need to move. When you feel symptoms coming on, take a break and get up.

When To Contact A Doctor

If you have trouble sitting still, or you think you have RLS, speak with a doctor. Some people are afraid to seek help, out of concern that they might look foolish or have a hard time explaining their symptoms. And RLS is sometimes misdiagnosed. But awareness of this condition has been increasing among physicians and the public. 

If you’re not sure whether you should speak with a doctor, you can take an online screening test.

But remember that no screening test can take the place of an examination by your doctor.

Questions For Your Doctor

If you need specialized treatment for RLS, your primary care doctor can refer you to a specialist or you can use the Willis-Ekbom Disease Foundation’s directory of doctors who treat RLS. You can find this directory here.

Questions For A Doctor

When you go to see your doctor, it’s good to have a list of the questions you’d like to have answered. Take a moment to write down some of the things you want to know. Your questions for your doctor might include some of these:

  • What changes should I make in my lifestyle to help me function?
  • Do you recommend medication as well?
  • Do the treatments for my other conditions affect my RLS?
  • Is there anything else I should know about RLS?

Resources

Other useful resources to help you learn about RLS and take charge of your treatment can be found at:

Willis-Ekbom Disease Foundation

National Sleep Foundation

Article about resources for RLS