Overview: What is Restless Legs Syndrome?
Restless Legs Syndrome (RLS) is a chronic neurological disorder. It is accompanied by an intense, uncomfortable urge to move the legs (less commonly other parts of the body), usually accompanied by unpleasant sensations that are difficult to describe. The symptoms are most noticeable in the evening and at night, as well as at rest – lying comfortably on the couch or in bed is difficult or impossible for those affected, depending on the severity of the disease. Some even walk around the living room several times a night to cope with the discomfort – an enormous physical and mental 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 affected more frequently than men. Age also plays a role: most often, Restless Legs Syndrome first appears around the age of 30. Initially, the symptoms often occur only intermittently. 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” occurs is still unknown. However, there is evidence that the disease is associated with a disturbance in dopamine metabolism in the brain. Dopamine is a nerve messenger that is responsible for movement control, among other things.
A connection between RLS and dopamine metabolism is supported by the fact that the symptoms can often be alleviated with L-dopa (a precursor of dopamine) and agents 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. Specialists in this case speak of idiopathic restless legs syndrome. About half of those affected have a hereditary predisposition to RLS. For example, if one parent suffers from “restless legs,” the risk for the children to also suffer from it 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 conjunction with another condition or certain circumstances. These include, for example:
- Iron deficiency
- Kidney weakness requiring dialysis (kidney failure)
- Thyroid dysfunction
- Rheumatoid arthritis
- Polyneuropathy (disease of the peripheral nervous system)
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).
Symptoms: Restless Legs Syndrome
The eponymous “restless legs” are the most noticeable symptom in 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, and a feeling of cold or heat in the legs, mainly the calves. In addition, the limbs may hurt more or less.
Typically, these complaints occur mainly in the evening and at night and exclusively at rest, such as when sitting or lying quietly. Therefore, many sufferers have difficulty falling asleep and staying asleep. And even once they doze off, their bodies often don’t come to rest – many sufferers periodically move their legs in their sleep. All in all, this disturbed, restless sleep leads to many sufferers being tired, sleepy and unable to perform well during the day.
A final compelling feature of restless legs syndrome is that leg discomfort improves with movement, such as walking around. However, how pronounced the RLS symptoms are varies from individual to individual. Some sufferers also have symptoms in the arms or other areas of the body.
Restless Legs Syndrome – Diagnosis with us
Restless Legs Syndrome is often already correctly diagnosed by the family doctor. However, in certain cases, the diagnosis of this neurological disease is not so simple and the affected people seek specialists. Based on your description of the symptoms, we will be able to determine whether the suspicion of Restless Legs Syndrome is highly likely. The following four symptoms are crucial – they must be present for us to make the 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 complaints show or intensify in resting situations.
- Exercise improves the symptoms or even makes them disappear.
- The symptoms worsen in the evening or at night.
In addition, there are 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 of symptoms under dopaminergic treatment (treatment with levodopa or dopamine agonists)
- known cases of Restless Legs Syndrome in the family
If, after the description of the symptoms and a physical examination, the diagnosis is still not certain, additional examinations and tests can bring clarity. For example, this may be true if at least two supporting diagnostic criteria do not apply.
In this case, an examination in the 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. Video is also used to record any periodic and involuntary leg movements. This so-called polysomnography can support the diagnosis.
In order to rule out other diseases as the cause of your complaints, further examinations may be necessary. These include, for example, blood and urine tests as well as measurement of nerve conduction velocity (electroneurography) and electrical muscle activity (electromyography). In particular, an iron deficiency – or already low-normal iron levels – must be actively sought and, if necessary, treated.
By the way: In rare cases, children already suffer from Restless Legs Syndrome. However, the symptoms are then 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, Early Detection, Prognosis
Restless legs syndrome can hardly be prevented. In most cases, the reason for the disease remains unknown or is based on a genetic predisposition. There is also no specific program for screening for RLS, even for people who have cases of restless legs syndrome in their family or have a condition known to be clustered with “restless legs.” However, if you develop “restless legs”, it is advisable to seek medical help.
The exchange with people who are affected by the same disease can be a great support in coping with the disease. Advice on finding a suitable self-help group is available from Selbsthilfe Zürich. Self-Help Zurich and the University Hospital Zurich are cooperation partners in the national project “Health literacy thanks to self-help-friendly hospitals”.
Restless Legs Syndrome: Treatment depending on the symptoms
The treatment of Restless Legs Syndrome is planned individually. On the one hand, we will take into account how pronounced your complaints are and how much you suffer from them. Second, treatment planning is based on whether there is a known trigger for the symptoms, i.e., whether there is secondary RLS.
Medical treatment of secondary restless legs syndrome
If a metabolic disorder, disease or medication has triggered Restless Legs Syndrome in you, we can start a specific therapy if possible. Some examples:
- If your “restless legs” are related to an iron deficiency, we will prescribe a preparation to compensate for the deficit. If Restless Legs Syndrome is accompanied by kidney failure, blood washing (dialysis), which is necessary anyway, can also help against the “restless legs” as a side effect. If a certain medication triggers or at least aggravates Restless Legs Syndrome in you, we will check whether you may safely discontinue this medication and, if necessary, replace it with another preparation. It is important that you never discontinue prescribed medications on your own!
- In women in whom restless legs syndrome occurs in association with pregnancy, treatment is usually not recommended. The “restless legs” usually disappear on their own after 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 in the case of pronounced symptoms and relevant suffering pressure of the sufferer (in the case of secondary RLS possibly in addition to the treatment of the underlying disease).
The first-line medications for the treatment of restless legs syndrome are gabapentin, dopamine agonists, and levodopa:
- Gabapentin: This active ingredient, originally developed for epilepsy, has proven effective against restless legs syndrome and has also been the first choice in its treatment for a few years. The main advantage is that a significantly lower risk of augmentation was observed with gabapentin.
- Dopamine agonists: These are agents that produce a dopamine-like effect in the brain. These include, for example, rotigotine, ropinirole and pramipexole. These drugs usually have a very good effect, but are associated with a certain risk of augmentation.
- L-dopa: This active ingredient is a precursor of the endogenous nerve messenger 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 already in blood vessels outside. 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 the highest.
If these medications do not work (sufficiently) or are not well tolerated by the affected person, we may be able to prescribe other agents. For example, if you have very painful restless legs syndrome, alternative treatment with other substances up to opioids may be helpful.
If you have 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 antianxiety effect.
By augmentation we mean a worsening of Restless Legs symptoms under treatment. Typically, these are symptoms occurring earlier in the day instead of in the evening, and an extension of symptoms from the legs to the arms or trunk. Increasing the dose of medication does not provide relief, but may exacerbate the symptoms. In this situation, consultation with the attending physician is indicated, and the drug strategy must be changed (e.g., change of drug).