Restless legs syndrome

Published by Bupa's Health Information Team, February 2011.

This factsheet is for people who have restless legs syndrome (RLS), or who would like information about it.

RLS is a condition that affects the legs. It starts with a sudden, unpleasant sensation deep inside one or both legs. This is accompanied by an irresistible urge to move the legs to stop the unpleasant feeling.

RLS is a common condition and is estimated to affect one in 10 people. It can occur at any age, even in children, but is more common as people get older. It affects more women than men.

About restless legs syndrome

RLS also known as Ekbom syndrome (after the doctor who first described it), is a movement disorder affecting your nervous system (the brain and spinal cord). It causes uncomfortable or unpleasant feelings in your legs and an irresistible urge to move your legs to relieve the sensation.

The sensation in your leg(s) can be difficult to describe. Some people call it a burning, tugging, creeping feeling or like there are insects crawling under their skin. Other people say it feels like an electric current or fizzy water in their legs.

The symptoms usually start when you’re inactive or trying to relax, for example when you’re sitting for long periods of time or lying in bed. This is most often in the evening and can sometimes make it difficult for you to fall asleep and stay asleep at night.

Nearly nine out of 10 people with RLS also have a condition called periodic limb movement in sleep, which causes your legs to twitch or jerk every 20 to 30 seconds when you’re sleeping. Unlike RLS, you have no control over these movements. The twitches can be strong enough to wake you up, disrupting your sleep.

Symptoms of restless legs syndrome

Symptoms of RLS can vary from very mild and infrequent to so severe that they prevent you from sleeping and interfere with your everyday life.

Common symptoms include:

• an uncomfortable or unpleasant sensation in one or both of your legs
• an irresistible urge to move your leg(s), especially when you have the unpleasant sensation
• a need to keep your legs moving, for example pacing the floor, constantly tapping your feet while sitting or tossing and turning in bed
• involuntary jerking or twitching of your legs throughout the night
• disturbed rest or sleep - this can lead to excessive sleepiness during the day

Symptoms normally occur in the evening or at night when you are trying to relax or sleep, and are usually gone by 5 o'clock in the morning. Most people have no symptoms at all during the day. However, in severe cases, you may have symptoms all the time.

Causes of restless legs syndrome

It’s not fully understood what causes RLS. It seems to be related to an imbalance of a chemical (dopamine) in your brain that controls movement.

There are two main types of RLS – primary RLS and secondary RLS.

Primary restless legs syndrome

This is the most common type of RLS and is a disorder of the central nervous system. It's sometimes referred to as idiopathic RLS. It often runs in families – up to half of people with primary RLS have inherited it. Primary RLS tends to affect people at a younger age (under 45) and usually develops slowly. Tiredness, stress and other psychological factors generally make symptoms worse.

Secondary restless legs syndrome

Secondary RLS is related to an underlying health condition, including any the following conditions.

Vitamin or mineral deficiency
Low amounts of iron in your blood or anaemia can cause RLS – about a quarter of people with RLS have iron deficiency. Not having enough magnesium or folate, or vitamin B12 in your diet can also cause RLS.

Pregnancy
One in five pregnant women get symptoms of RLS, especially during the third trimester (months six to nine of pregnancy). These symptoms usually disappear a few weeks after having your baby.

Kidney disease
Up to half of people with kidney disease have RLS. The symptoms are often particularly bad during dialysis when you need to lie or sit still for long periods of time. Symptoms often improve after a kidney transplant.

Chronic disease
Several chronic diseases have been linked to RLS, including diabetes, peripheral neuropathy, Parkinson's disease, thyroid disorders, rheumatoid arthritis and fibromyalgia.

Drug-induced
Certain medicines can cause or worsen RLS. These include:

• anti-sickness medicines (eg metoclopramide)
• antidepressants (eg amitriptyline and paroxetine)
• beta-blockers (eg propranolol)
• anti-psychotic medicines (eg haloperidol)
• lithium
• some antihistamines (eg diphenhydramine).

Alcohol, caffeine and cigarettes may also make your RLS symptoms worse.

Diagnosis of restless legs syndrome

Your GP will be able to diagnose RLS. He or she will ask you about your symptoms and your general wellbeing. RLS is an under-diagnosed condition because people have difficulty explaining their symptoms, and worry that their GP may not take them seriously. It's important to be open with your GP and describe your symptoms as they feel to you.

Your GP may carry out a physical examination and ask you to have a blood test. This is to rule out any underlying conditions that could be causing secondary RLS.

Usually your GP can diagnose and treat your RLS. But if there is an underlying cause or the treatments don’t improve your symptoms, he or she may refer you to a specialist.

Treatment for restless legs syndrome

If your condition is mild, you may not need any treatment. Your GP will suggest simple lifestyle changes to help keep your symptoms under control.

For secondary RLS, symptoms usually ease or disappear once the underlying condition has been treated.

Self-help

Simple lifestyle changes can really help to prevent symptoms. These include:

• cutting out caffeine and alcohol from your diet
  
• stopping smoking
  
• taking moderate exercise (but not close to bedtime)
  
• getting into a good bedtime routine to maintain a regular sleep pattern – for example, going to bed at the same time every evening and getting up at the same time every morning

You may find that self-help techniques can help when you do get symptoms. These include:

• taking hot or cold baths – try both to see which works for you
  
• going for a walk or stretching your legs
  
• massaging your legs
  
• distracting your mind by watching TV or reading an engaging book
  
• practising relaxation exercises or yoga

Medicines

If your symptoms are interfering with your daily life and lifestyle changes haven't helped, your GP may prescribe you medicines called dopamine agonists. These work by increasing the amount of dopamine in your brain. Dopamine agonists are usually used to treat Parkinson's disease, but are also effective for RLS.

If you get symptoms three times a week or less, your GP may offer you a dopamine agonist called levodopa. This hasn’t yet been licensed for the treatment of RLS and RLS isn't listed in the patient information leaflet that comes with the medicine. Your doctor can legally prescribe outside the licence if he or she feels the medicine will be effective for you. Prescribing outside the license is called ‘off-label’ use.

If your symptoms happen every day, your GP may prescribe any of the three dopamine agonists that are licensed for use in the UK to treat RLS: pramipexole, ropinirole and rotigotine. If you see a neurologist, he or she may offer you other types of dopamine agonists that haven’t yet been licensed for the treatment of RLS, such as pergolide.

Other medicines that your GP or neurologist may prescribe, especially if the dopamine agonists haven’t been effective are listed below.

• Gabapentin – this is usually used as an anti-epileptic medicine or for pain relief and is especially useful if your RLS is painful.
  
• Codeine – this is a painkiller if your symptoms are painful.
  
• Hypnotics – these help you sleep if your sleep is being disturbed (eg temazepam or zopiclone).

These medicines will relieve symptoms of RLS, but they won't cure your condition.

Anaemia or iron-deficiency is a very common cause of secondary RLS. If a blood test shows that you’re low in iron, your GP will assess the cause and prescribe you iron tablets.

For answers to frequently asked questions on this topic, see Common questions.

For sources and links to further information, see Resources.