Overview: What is restless legs syndrome?
Restless legs syndrome (RLS) is a chronic neurological disorder. It is accompanied by an intense, unpleasant urge to move the legs (more rarely also in other parts of the body), usually accompanied by unpleasant sensations that are difficult to describe. The symptoms are particularly noticeable in the evening and at night, as well as at rest – lying comfortably on the couch or in bed is difficult or even impossible for those affected, depending on the severity of the disease. Some even walk around the living room several times a night to get rid of the symptoms – an enormous physical and emotional burden for the sufferers.
Restless legs syndrome: frequency and age
Restless legs syndrome is one of the most common neurological disorders. Experts estimate that five to ten percent of the population suffer from “restless legs”. Women are more frequently affected than men. Age also plays a role: restless legs syndrome usually first appears around the age of 30. Initially, the symptoms are often only intermittent. With increasing age, the symptom-free phases generally become shorter and less frequent.
Restless legs syndrome: causes and risk factors
Exactly how the movement disorder of “restless legs” comes about is still unknown. However, there are indications that the disease is linked to a disorder of the dopamine metabolism in the brain. Dopamine is a neurotransmitter that is responsible for movement control, among other things.
A connection between RLS and the dopamine metabolism is supported by the fact that the symptoms can often be alleviated with L-dopa (precursor of dopamine) and active substances with a dopamine-like effect (dopamine agonists). In addition to dopamine, iron metabolism is also thought to play an important role in restless legs syndrome.
What triggers restless legs syndrome often remains unknown. In this case, specialists speak of idiopathic restless legs syndrome. Around half of those affected have a hereditary predisposition to RLS. If one parent suffers from “restless legs”, for example, the risk of the children also developing the condition is increased. Researchers have identified several genes that play a role in this.
In addition to idiopathic RLS, there is also secondary or symptomatic restless legs syndrome. For those affected, the “restless legs” occur in connection with another illness or certain circumstances. These include, for example:
In addition, some medications are known to trigger or at least exacerbate restless legs syndrome. This applies, for example, to certain drugs for cardiovascular problems (e.g. beta blockers) and depression (e.g. tricyclic antidepressants).
Restless legs syndrome symptoms
The eponymous “restless legs” are the most striking symptom of restless legs syndrome – sufferers feel a compulsive urge to move their legs. In addition, there are unpleasant sensations such as tingling, pulling, tearing, a feeling of pressure or tension, a feeling of cold or heat in the legs, mainly the calves. In addition, the limbs may hurt to a greater or lesser extent.
Typically, these symptoms occur mainly in the evening and at night and only at rest, for example when sitting or lying down. This is why many sufferers have difficulty falling asleep and staying asleep. And even when they do fall asleep, their body often does not come to rest – many sufferers move their legs periodically in their sleep. All in all, this disturbed, restless sleep means that many sufferers are tired, sleepy and less productive during the day.
A final compelling feature of restless legs syndrome is that the symptoms in the legs improve with movement, for example by walking around. However, the severity of RLS symptoms varies from person to person. Some sufferers also have symptoms in the arms or other parts of the body.
Restless legs syndrome diagnosis
Restless legs syndrome is often correctly diagnosed by the family doctor. In certain cases, however, the diagnosis of this neurological disorder is not so simple and those affected seek out specialists. Based on your description of the symptoms, we will be able to determine whether there is a high probability of restless legs syndrome. The following four symptoms are decisive – they must be present for us to be able to make a diagnosis of “restless legs syndrome”(essential diagnostic criteria):
- You feel an urge to move your legs (possibly also your arms), which is often associated with unpleasant sensations (such as tingling, pulling).
- The symptoms appear or worsen in resting situations.
- Exercise improves the symptoms or they even disappear.
- The symptoms worsen in the evening or at night.
There are also some factors that often, but not always, occur in restless legs syndrome(supporting diagnostic criteria). These include, for example:
- Periodic leg and arm movements during sleep
- Improvement in symptoms under dopaminergic treatment (treatment with levodopa or dopamine agonists)
- known cases of restless legs syndrome in the family
If the diagnosis is still not certain after the description of the symptoms and a physical examination, additional examinations and tests can provide clarity. This may be the case, for example, if at least two supporting diagnostic criteria do not apply.
In this case, an examination in a sleep laboratory may be indicated. You will spend one night there under our medical supervision. While you sleep, your brain wave activity, leg movements, breathing, heart rate, blood pressure and other functions of your body are continuously measured. Any periodic and involuntary leg movements are also recorded on video. This so-called polysomnography can support the diagnosis.
Further examinations may be necessary to rule out other illnesses as the cause of your symptoms. This includes, for example, blood and urine tests as well as measuring nerve conduction velocity (electroneurography) and electrical muscle activity (electromyography). Iron deficiency in particular – or already low-normal iron levels – must be actively sought and treated if necessary.
By the way: in rare cases, even children suffer from restless legs syndrome. However, the symptoms are usually only very mild and the disease is often not recognized. Instead, the complaints are misinterpreted as “growing pains” or ADHD (attention deficit hyperactivity disorder), for example.
Restless legs syndrome: prevention and early detection
Restless legs syndrome can hardly be prevented. In most cases, the cause of the disease remains unknown or is based on a genetic predisposition. There is also no specific program for the early detection of RLS, even for people who have a family history of restless legs syndrome or suffer from a condition known to be associated with “restless legs”. However, if you develop “restless legs”, it is advisable to seek medical help.
Self-help groups
Talking to people with the same condition can be a great support when coping with an illness. For advice on finding a suitable self-help group, please contact the Swiss Restless Legs Self-Help Group or Self-Help Zurich. Selbsthilfe Zürich and the University Hospital Zurich are cooperation partners in the national project “Health literacy thanks to self-help-friendly hospitals”.
Restless legs syndrome treatment
Therapy for restless legs syndrome is planned individually. On the one hand, we will take into account how severe your symptoms are and how much you suffer from them. Secondly, treatment planning depends on whether there is a known trigger for the symptoms, i.e. whether there is secondary RLS.
Treatment for secondary restless legs syndrome
If a metabolic disorder, illness or medication has triggered your restless legs syndrome, we can start a specific therapy if possible. Some examples:
- If your “restless legs” are associated with an iron deficiency, we will prescribe you a preparation that compensates for the deficit. If restless legs syndrome is associated with kidney failure,dialysis, which is necessary anyway, can also help with the “restless legs” as a side effect. If a certain medication triggers or at least exacerbates restless legs syndrome in you, we will check whether you can safely stop taking this medication and, if necessary, replace it with another preparation. It is important that you never stop taking prescribed medication on your own initiative!
- Treatment is generally not recommended for women with restless legs syndrome in connection with pregnancy. The “restless legs” usually disappear on their own after the birth.
Medication for restless legs syndrome
If necessary, the symptoms of restless legs syndrome can be alleviated with medication. However, these do not help against the known or unknown causes of the disease. It is therefore a purely symptomatic therapy. It is considered if the patient has pronounced symptoms and relevant psychological stress (in the case of secondary RLS, possibly in addition to treatment of the underlying disease).
The drugs of first choice for the treatment of restless legs syndrome are gabapentin, dopamine agonists and levodopa:
- Gabapentin: This active ingredient, originally developed for epilepsy, has proven to be effective against restless legs syndrome and has also been the first choice for its treatment for a few years now. The main advantage is that a significantly lower risk of augmentation was observed with gabapentin.
- Dopamine agonists: These are active substances that produce a dopamine-like effect in the brain. These include, for example, rotigotine, ropinirole and pramipexole. These drugs generally have a very good effect, but are associated with a certain risk of augmentation.
- L-dopa: This active ingredient is a precursor of the body’s own neurotransmitter dopamine. It is administered in combination with the active ingredient benserazide, which ensures that L-dopa is only converted into dopamine in the brain and not in blood vessels outside the brain. The reason: L-dopa can cross the blood-brain barrier (i.e. pass unhindered from the blood into the brain), whereas dopamine cannot. The effect is good, but the risk of augmentation is highest.
If these medications do not work (sufficiently) or are not well tolerated by the person concerned, we may be able to prescribe other active substances. For example, if you suffer from very painful restless legs syndrome, alternative treatment with other substances, including opioids, may be helpful.
If you suffer from restless legs syndrome in conjunction with an anxiety disorder, the above-mentioned active ingredient pregabalin may also be useful – in addition to its anticonvulsant effect, it also has an anxiolytic effect.
Augmentation
By augmentation we mean a worsening of restless legs symptoms under treatment. Typically, these symptoms occur earlier in the day instead of in the evening, and the symptoms spread from the legs to the arms or trunk. Increasing the dose of medication does not bring any relief, but can actually exacerbate the symptoms. In this situation, consultation with the attending physician is indicated and the medication strategy must be changed (e.g. change of medication).
Sleep disorders consultation at the Clinic for Neurology
The sleep consultation at the Department of Neurology offers comprehensive assessments and treatments for all forms of sleep disorders – from problems falling asleep and sleeping through the night to sleep apnea, daytime sleepiness or sleep-related movement disorders.
Treating departments
Restless legs syndrome is treated on an interdisciplinary basis at the USZ. Depending on the cause and severity of the symptoms, specialist areas such as neurology, pneumology, consultant psychiatry and psychosomatics work closely together. The aim is to take comprehensive account of both neurological and accompanying physical or psychological factors and to ensure individually tailored therapy.
