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Restless legs syndrome

Published by Bupa's health information team, December 2008.

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

Restless legs syndrome (RLS) is a condition that affects your legs. It starts with a sudden, unpleasant sensation deep inside one or both of your legs. This is accompanied by an irresistible urge to move your 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 you get older. RLS affects slightly more women than men.

About restless legs syndrome
Symptoms of restless legs syndrome
Causes of restless legs syndrome
Diagnosis of restless legs syndrome
Treatment for restless legs syndrome
Living with restless legs syndrome
Further information
Questions and answers
Related topics
Sources

About restless legs syndrome

RLS, also known as Ekbom syndrome (after the doctor who first described it), is a neurological movement disorder. It causes uncomfortable or unpleasant feelings in your legs. The only way to relieve these feelings is to move your legs in a quick, repetitive way.

The sensation you get in your leg(s) can be difficult to explain. It's been described as a burning, tugging, creeping feeling or like there are insects crawling under your skin. Other people have compared it to feeling like there is an electric current or flowing water in their legs.

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

It's estimated that 85 percent of people with RLS also have a condition called periodic limb movement disorder (PLMD). This normally affects your legs and causes them to twitch or jerk every 10 to 60 seconds when you are sleeping. Unlike RLS, these movements are involuntary which means you have no control over them. This can cause you to keep waking throughout the night, 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

The exact cause of RLS isn't fully understood at present. It's thought to be related to an imbalance of a chemical (dopamine) in your brain that controls movement.

Doctors have identified two main types of RLS - primary RLS and secondary RLS.

Primary RLS

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 frequently runs in families, with up to half of those with the condition having 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 RLS

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

Vitamin and/or mineral deficiency

Low amounts of iron in your blood or anaemia can cause RLS. Symptoms of RLS occur in a third of people who are deficient in iron. Not having enough magnesium or folate in your diet can also cause RLS symptoms.

Pregnancy

Pregnant women often get symptoms of RLS, especially during their third trimester (months six to nine of pregnancy). These symptoms usually disappear a few weeks after giving birth.

Kidney disease

Up to half of people with kidney disease have RLS symptoms. These symptoms are often particularly bad during dialysis when you are forced 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, chronic obstructive pulmonary disease (COPD), Parkinson's disease and thyroid disorders.

Drug-induced

Certain medicines, such as anti-sickness medicines (eg prochlorperazine or metoclopramide), antidepressants (eg amitriptyline or paroxetine), beta-blockers (eg propranolol) and anti-epileptic medicines (phenytoin) are all associated with RLS symptoms. Alcohol, caffeine and cigarettes have also been found to be related to RLS.

It's not known if any of these health conditions or drugs actually cause RLS, but there is a clear association between them. It's thought that a combination of several different mechanisms and triggers in the body may lead to RLS, not one specific cause.

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 of the difficulties people have in explaining their symptoms and their concerns over not being taken seriously by their GP. It's important to be open with your GP and describe your symptoms as they feel to you. There's no need to feel embarrassed, he or she is trained to treat conditions like RLS and will have heard similar descriptions of such symptoms before.

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

Usually RLS is diagnosed and treated by your GP. However, if an underlying cause is found or you are not responding to treatment, you may be referred to a specialist for treatment and monitoring.

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 prevent symptoms and keep them 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

Many people find that when they do get symptoms, using the following self-help techniques can help:

taking hot or cold baths - try both to see which works for you
using heat pads or ice packs on your legs
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 in 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 to correct any chemical imbalance. Usually dopamine agonists are used to treat people who have Parkinson's disease, but have also been found to be effective in the treatment of RLS.

Currently there are only two kinds of dopamine agonists licensed for use in the UK to treat RLS: pramipexole (eg Mirapexin) and ropinirole (eg Adartrel). Your GP may prescribe you other types of dopamine agonists that have not yet been licensed for the treatment of RLS, such as pergolide (eg Celance).

An unlicensed medicine doesn't mean that it's not safe to take - it just hasn't been given a license for that particular condition yet. This may be because there isn't enough commercial interest in the drug being licensed or it may be waiting for a license to be given. GPs and other healthcare professionals are allowed to prescribe unlicensed drugs as long as they are of benefit to your condition.

Other unlicensed medicines that your GP may prescribe, especially if the dopamine agonists have not been effective, include:

codeine, usually used as a strong painkiller
carbamazepine (eg Tegretol), usually given as an anti-epileptic medicine or for people with bipolar disorders
clonazepam (eg Rivotril), a benzodiazepine usually used as an anti-anxiety or anti-epileptic medicine
gabapentin (eg Neurontin), usually used as an anti-epileptic medicine or for pain relief

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 are low in iron, your GP will assess the cause and prescribe you iron tablets, such as Feospan.

Living with restless legs syndrome

Prevention is the key to controlling symptoms of RLS. Making simple lifestyle changes such as stopping smoking, cutting out caffeine and alcohol, taking moderate exercise and getting into a good sleep pattern, can really make a difference.

Further information

RLS: UK
www.restlesslegs.org.uk
Ekbom Support Group
01634 260483
www.rlsuk-esa.org.uk