What is restless legs syndrome?
Restless legs syndrome (RLS) is sometimes called Ekbom’s syndrome after the doctor who first described it in 1945. It is a condition where you have an urge to move your legs. This is usually caused by an uncomfortable or unpleasant feeling in the legs.
What are the symptoms of restless legs syndrome?
Many people with RLS find it difficult to describe the feeling that they get in their legs. It may be like a crawling sensation, or like an electric feeling, or like toothache, or like water running down your leg, or like itchy bones or just fidgety, jumpy or twitchy legs, or just uncomfortable. Some people describe a deep painful feeling in their legs. The unpleasant feelings make you have an urge to move. Typically, when the unpleasant feelings occur they occur every 10-60 seconds and so you become quite restless.
Typically, the symptoms:
- Develop when you are resting – particularly when you are sitting down or lying in bed. They tend to be worse if you are in a confined space such as in a cinema seat.
- Are usually worse in the evening. In many people they only occur in the evening, especially when trying to get to sleep. The symptoms can make it difficult to get to sleep. This can have a knock-on effect of causing poor sleep, and tiredness the next day.
- Are usually eased briefly by moving, walking, massaging or stretching the legs. However, the symptoms tend to return shortly after resting again.
- Usually affect both legs. Occasionally, the arms are affected too.
About 3 in 4 people with RLS also have sudden jerks (involuntary movements) of their legs when they are asleep. This is called periodic limb movements of sleep (PLMS). These movements can wake you up (and/or your partner). Some jerks may also occur when you are awake but resting.
The severity of symptoms can vary from a mild restlessness of the legs on some evenings, to a distressing problem that occurs every evening and night (and, sometimes, during the daytime) which regularly disturbs sleep. Many people fall somewhere in between these extremes. If you have moderate or severe symptoms it may lead to anxiety and depression on top of the RLS.
In addition to the unpleasant symptoms when they occur, many people with RLS become persistently tired. This is due to the symptoms of restlessness and/or PLMS that can cause regular disturbed nights’ sleep. This can have a knock-on effect of causing daytime tiredness due to lack of sleep.
Who gets restless legs syndrome?
About 1 in 10 people develops some degree of RLS at some point in their life. It can affect anyone and can first develop at any age. It affects women more often than men.
What causes restless legs syndrome?
The cause is not known in most cases
This is called primary or idiopathic RLS. (Idiopathic means of unknown cause.) This most commonly first develops in younger adults (under 45 years old). Symptoms tend to become slowly worse over the years. It is thought that the cause may be a slight lack of, or imbalance of, some brain chemicals (neurotransmitters), especially one called dopamine. It is not known why this should occur. There may be some genetic factor as primary RLS runs in some families.
Symptoms of RLS can develop as a complication of certain other conditions. For example:
- Pregnancy. About 1 in 5 pregnant women develops RLS during pregnancy (especially in the later part of pregnancy). Symptoms often go after giving birth.
- Lack of iron (iron deficiency) – which can cause anaemia. If this is the cause, then the symptoms of RLS usually go if you take iron tablets.
- As a side-effect of some drugs. For example, it occurs in some people who take: antidepressants, antipsychotics, dopamine antagonists, antihistamines, calcium channel blockers, phenytoin, or steroids.
- As a symptom of some other conditions. For example, kidney failure, Parkinson’s disease, diabetes, and underactive thyroid.
How is restless legs syndrome diagnosed? Do I need any tests?
A doctor will usually make the diagnosis from the typical symptoms. There is no test to prove the diagnosis. A doctor may do some tests to rule out a secondary cause. For example, a blood test to check for a lack of iron, and to rule out kidney failure.
What is the treatment for restless legs syndrome?
Treatment for secondary RLS is to treat the underlying cause such as iron deficiency, etc. Perhaps a change of medication may be advised if a side-effect from a drug is thought to be responsible. However, most people with RLS have primary RLS.
For primary RLS, if symptoms are mild or infrequent then no treatment may be needed or wanted. Many people are reassured that they have primary RLS and not something more serious. (Some people with RLS fear that they have a serious neurological disorder.) If the symptoms are troublesome, then one or more of the following may be advised.
- Simple distractions such as reading or watching TV may help if symptoms are mild.
- Sleep hygiene to help improve your sleep patterns. This means:
- Try to get into a regular bedtime routine of going to bed and getting up at the same time each day.
- Do not nap – especially in the evenings.
- Take some exercise during the day (but not near bedtime).
- Avoid drinks that contain caffeine (a stimulant) before bedtime.
- Try to relax before going to bed. A relaxing warm bath may help.
- A trial without caffeine or alcohol altogether. (Caffeine or alcohol may make symptoms worse.) Reduce or cut out any drinks that contain caffeine, such as tea, coffee and cola. Also limit, or cut out, alcohol. Try this for a couple of weeks or so to see if symptoms improve. If symptoms do improve, you could then experiment to see what level of caffeine or alcohol causes symptoms. For example, you may not need to cut these things out completely, but just take less than you were used to.
There is some evidence to suggest that regular daytime exercise can reduce the symptoms of RLS and reduce periodic limb movements of sleep described earlier. For example, one small study split a number of people with RLS into two groups. One group did three sessions of exercise training per week. The other group did no exercise (the control group). After twelve weeks the exercise group had a significant improvement in symptoms compared with the control group. Further research is needed to confirm these results. However, it would certainly do no harm to try regular exercise during the daytime to see if symptoms improve.
If symptoms are not helped much by the above then your doctor may suggest medication.
Dopamine agonists are the most commonly used drugs to treat RLS. There are various types and brands. Dopamine agonists in effect top up a low level of dopamine which is thought to be lacking in people with RLS. Dopamine agonist drugs used to treat RLS include pramipexole, ropinirole and rotigotine. There is a good chance that symptoms will go or greatly reduce in severity if you take one of these drugs.
As with any medication, the benefit of treatment has to be weighed against the possible side-effects of treatment. The most common side-effects of these drugs are nausea (feeling sick), light headedness, tiredness and difficulty with sleep. However, many people do not get any side-effects, or they are mild, and the side-effects often go away with continued use.
Other drugs that are sometimes used include: carbamazepine, gabapentin, strong painkillers, and benzodiazepines. One may be tried if other treatments have not helped.
Further help and information
RLS-UK/Ekbom Syndrome Association
PO Box 814, Gillingham, Kent ME8 1BS
Tel: 01634 260483 (Mon and Thurs, 9-11am only) Web: www.rlsuk-esa.org.uk
References and Disclaimer | Provide feedback
- Restless legs syndrome, Clinical Knowledge Summaries (December 2009)
- EFNS guidelines on management of restless legs syndrome and periodic limb movement disorder in sleep, European Federation of Neurological Societies (2006)
- Allen RP, Walters AS, Montplaisir J, et al; Restless legs syndrome prevalence and impact: REST general population study. Arch Intern Med. 2005 Jun 13;165(11):1286-92. [abstract]
- Abetz L, Allen R, Follet A, et al; Evaluating the quality of life of patients with restless legs syndrome. Clin Ther. 2004 Jun;26(6):925-35. [abstract]
- Esteves AM, de Mello MT, Pradella-Hallinan M, et al; Effect of acute and chronic physical exercise on patients with periodic leg movements. Med Sci Sports Exerc. 2009 Jan;41(1):237-42. [abstract]
- Aukerman MM, Aukerman D, Bayard M, et al; Exercise and restless legs syndrome: a randomized controlled trial. J Am Board Fam Med. 2006 Sep-Oct;19(5):487-93. [abstract]