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Restless legs syndrome explained

Tony Gillam
BA(Hons) RMN DipCPN
Mental Health Nurse Clinical Manager of Worcestershire's Early Intervention Team

In 1945, Swedish neurologist Karl Ekbom wrote: "The syndrome is so common and causes such suffering that it should be known to every physician."(1)
More than half a century later it is doubtful that restless legs syndrome (RLS) awareness is as high among health professionals as Ekbom would have wished. Ekbom coined the term in 1945, hence the condition is also known as "Ekbom's disease", although he was not the first to describe it. The 17th century English physician Thomas Willis, writing in 1685, gave the following graphic account:

"… wherefore to some, when being in bed they betake themselves to sleep, presently in the arms and legs, leaping and contractions of the tendons and so great a restlessness and tossing of the members ensue, that the diseased are no more able to sleep, than if they were in the place of the greatest torture!"(2)

This article clarifies what exactly is meant by RLS and what causes it. It identifies signs, symptoms and diagnostic criteria and discusses a range of interventions that can help the condition, and, most importantly, suggests what role practice nurses can play in the identification and management of RLS.

Overview of RLS
Over the last two decades RLS awareness has grown. Yet despite being a relatively common and treatable neurological disorder, it remains underrecognised by nurses and other healthcare professionals. The characteristic symptom is an uncontrollable urge to move the legs, usually accompanied or caused by unpleasant, abnormal sensations (dysaesthesia), or sensations of pricking, tingling or creeping (paraesthesia) in the affected limbs. Typically, only patients' legs are affected, but some may also experience similar effects in the arms.(3) These symptoms are worse at rest and during the evening and night and can therefore considerably impair a person's sleep, with a "knock-on" impact on daytime functioning.(4) 
Studies suggest that RLS affects 5-10% of the UK population, although the condition varies in severity, and it is estimated that only 3% seek medical help.(5) Abnormalities in the functioning of dopamine cells in the brain are thought to cause RLS, and can be categorised into primary and secondary cases. Primary (idiopathic) RLS has no apparent cause, although about half of patients report a family history, which may point to a genetic component. Secondary RLS (where the syndrome is associated with other conditions) is less common. Reversible or time-limited causes of RLS include anaemia, pregnancy and endstage renal disease. All three conditions are associated with iron deficiency. More rarely, RLS occurs secondary to other pathological states including diabetes mellitus, vitamin B12/folate deficiency, Parkinson's disease, fibromyalgia and rheumatoid arthritis. 

Signs and symptoms
The signs and symptoms of RLS are:

  • An almost irresistible urge to move the legs or arms when sitting or lying down.
  • An unpleasant sensation in the legs.
  • Difficulty falling asleep or staying asleep because of unpleasant sensations in the legs or arms.
  • Daytime sleepiness, as a result of insufficient restful sleep.

The impact on a patient's life can be considerable. Sleep deprivation can affect work and daytime performance. One study found that RLS could have a significant impact on a patient's quality of life; predictably, those with the more severe form of the condition experienced the most marked reduction in quality of life.(4)
Patients may feel anxious at nighttime because they anticipate having difficulty sleeping. It is during that period of restfulness that normally precedes sleep that RLS patients often find their symptoms at their worst, hence Willis's compelling image of patients being "in the place of the greatest torture".2 The website of the Australian RLS support group (see Resources) expresses a similar sentiment in a succinct way: "RLS … not life-threatening but can be life-torturing."
 
Clarifying the diagnosis
Of course, not all restlessness, twitching or shaking sensations in the legs are explained by RLS. Leg cramps and arthritis can both have similar effects. Equally, it is important to consider the presence of those conditions associated with secondary RLS.
It is thought that certain types of medication may aggravate the symptoms of RLS, these include ß-blockers, antihistamines and anticonvulsants, as well as antidepressants, neuroleptics and the mood stabiliser lithium.(5)
The interaction between medications used for other conditions and RLS is a complex area. For example, neuroleptics can cause akathisia, which might be confused with RLS. Akathisia involves a subjective feeling of inner restlessness and the urge to move accompanied by observable movements (eg, rocking, "marching on the spot", and crossing and uncrossing the legs while sitting).  One could imagine that it would be hard to distinguish between akathisia occurring at nighttime and RLS. 
Many of the conditions treated by the medications mentioned above (eg, cardiac problems, epilepsy, bipolar disorder and schizophrenia) are serious, whereas RLS is a distressing but not life-threatening disorder. Obviously, nurses can play a key role in helping patients minimise the risk of a worsening of any pre-existing condition while considering the possibility of RLS, by counselling against sudden discontinuation of medication. Once any pre-existing conditions and their treatments have been taken into account, an RLS clinician can make a clear analysis using four essential diagnostic criteria developed by the International Restless Legs Syndrome Study Group (see Box 1).

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Interventions
If the suspected RLS matches the essential diagnostic criteria, and secondary causes have been excluded, then patients will want to know what can be done to help. Patients could improve their sleep hygiene by keeping to a regular sleep pattern, eg, avoiding daytime napping, restricting caffeine, alcohol and tobacco intake and going to bed only when sleepy.
Apart from improved sleep hygiene, some RLS sufferers report benefits from other lifestyle changes. Regular walking, relaxation, stretching exercises or yoga may be beneficial, judging by comments on the websites of RLS support groups (see Resources). Although there is no scientific evidence to support these methods, the general health benefits of increased gentle exercise are likely to promote a greater sense of wellbeing in the patient.
Positive changes in lifestyle may suffice in milder cases of RLS. In more severe cases, patients may benefit from pharmacological treatment. More traditional forms of night sedation (such as the hypnotic zopiclone or benzodiazepines like temazepam) are not thought to be particularly helpful in RLS as they merely mask the underlying restlessness while symptomatically treating the sleep disturbance. Dopamine agonists (previously developed for use in Parkinson's disease) are now licensed for use in RLS. These drugs - pramipexole (Mirapexin; Boehringer Ingelheim) and ropinirole (Adartrel; GlaxoSmithKline) - can be prescribed in much lower doses than would be used in the treatment of Parkinson's disease and have been shown to be effective for about half of RLS patients.6
The role of the practice nurse in RLS
Given that RLS is still not always recognised, the practice nurse has a key role to play. Nurses are often the first to hear about a patient's difficulty sleeping. Bearing RLS in mind as a possible cause of sleep disturbance and daytime tiredness may give patients permission to discuss the problem. Patients may feel it is too trivial to mention, or that nothing can be done to help. By simply listening to a patient's concerns, nurses can offer validation and reassurance. It may be that the partner of an RLS sufferer mentions the problem to the nurse (like snoring, RLS is often as much of a problem for the person sharing the bed as the person experiencing it). The nurse can then suggest that the potential RLS sufferer come to the surgery for a more detailed discussion.
Practice nurses are well placed to check if patients have any pre-existing health conditions that might point to secondary RLS. Similarly, nurses can easily check if the patient is taking any medication that might be causing their symptoms. Great care should be taken to review prescribed medication, and patients should be counselled not to suddenly change or discontinue medication without medical advice. 
Nurses can order baseline investigations to exclude the possibility of other secondary causes. If it is clear that the RLS is primary, the nurse can discuss lifestyle changes, which some patients find helpful. Useful websites can also be offered and the patient can be encouraged to contact the Ekbom Support Group (see Resources). As with any other condition, patients can find it very reassuring to know they are not alone.
If the RLS is primary, but severe, the practice nurse can discuss with the patient's GP the possibility of prescribing a dopamine agonist. Nurses need to consider that their medical colleagues may not be fully aware of the condition or new treatment options either.  Practice nurses may also, therefore, find themselves in an educational role, raising awareness of RLS not only among patients and their families, but also among their nursing and GP colleagues.
               
Conclusion
Practice nurses have an invaluable role in recognising undetected RLS, in reassuring and educating patients and their families about the condition, and checking that it is not secondary to other conditions. With their skills in listening to patients and liaising with their medical colleagues, they can help to alleviate the symptoms of RLS, improving patients' daytime functioning.  Finally, through their day-to-day communication with GP colleagues, they can help to realise Ekbom's hope that RLS "be known to every physician".(1)

References

  1. Ekbom KA. Restless legs: a clinical study. Acta Med Scand 1945;158:1-123.
  2. Willis T. The London practice of physick. London: Bassett Crooke; 1685.
  3. Allen RP, Picchietti D, Hening WA, et al. Restless legs: diagnostic criteria, special considerations, and epidemiology. A report from the restless legs diagnosis and epidemiology workshop at the National Institutes of Health. Sleep Med 2003;4:101-19.
  4. Hening W, Walters AS, Allen RP, et al. Impact, diagnosis and treatment of restless legs syndrome (RLS) in a primary care population: the REST (RLS epidemiology, symptoms, and treatment) primary care study. Sleep Med 2004;5:237-46.
  5. Thomas S, MacMahon D. Restless legs syndrome: a condition in search of recognition. Br J Neurosci Nurs 2006;2:222-26.
  6. De Koker A, Whitehead H, Chaudhuri KR. Therapeutic strategies for restless legs syndrome. Future Prescriber 2005;Winter:5-10.

Resources
Ekbom Support Group
W: www.ekbom.org.uk
Website of the Ekbom Support Group, formed in the United Kingdom in 1988 with the aim of making RLS more widely known to the medical profession and the families of patients

RLS UK
W: www.restlesslegs.org.uk
Website of RLS UK, a multidisciplinary professional and academic group which aims to raise awareness of RLS among primary care and other healthcare professionals and to promote research into RLS

RLS Australia
W: www.rls.org.au
RLS Australia is a subgroup of Sleep Disorders Australia.  This website includes some interesting firsthand anecdotal accounts from people with the condition