Restless legs syndrome in older adults: causes, self-help and treatment

The NHS lists a strong need to move the legs, uncomfortable feelings such as tingling, throbbing or itching, and pain in the legs. Symptoms are usually worse at night when resting and can affect sleep, and some people also notice symptoms in the arms. NICE CKS calls RLS a neurological disorder characterised by an irresistible urge to move the limbs accompanied by uncomfortable sensations, typically worse in the evening and often associated with sleep disturbance.

NICE CKS lists the features that must all be present for a diagnosis: an urge to move the legs usually with unpleasant sensations; symptoms starting or worsening at rest such as lying or sitting; relief by movement such as walking or stretching for as long as the activity continues; symptoms worse or only present in the evening or night; and the features not being explained by another condition such as leg cramps or habitual foot tapping.

Many older adults have several conditions or medicines that can bring on or worsen RLS. NICE CKS says RLS may be secondary to pregnancy, iron deficiency or stage 5 chronic kidney disease, or to certain drugs such as some antidepressants, some antipsychotics and lithium, and advises reviewing the need for medicines that act on antihistamine, serotonin or dopamine pathways, which may worsen symptoms. The NHS similarly says a doctor might check what other medicines you take as some can make RLS worse. Do not stop any prescribed medicine without advice.

RLS is easy to confuse with other leg problems. The NHS mentions leg cramps and peripheral neuropathy; NICE CKS adds nocturnal leg cramps, akathisia and intermittent claudication. A useful distinction is that RLS eases when you move, whereas claudication from poor circulation comes on with walking and eases at rest. In older people with dementia who cannot describe their symptoms, restlessness, rubbing legs or pacing at night may be the visible sign, so carers may need to raise it.

The NHS says RLS is thought to be linked to levels of iron and the brain chemical dopamine, that there is usually no clear cause, and that you are more likely to get it if a family member has it. NICE CKS says it is frequently idiopathic, that in idiopathic RLS severity and frequency typically increase over time, and that the cause is likely related to dysfunction of the dopamine system.

NICE CKS says no investigation confirms idiopathic RLS, but tests may identify an underlying cause: serum ferritin to identify iron deficiency, and, guided by history and examination, kidney function, a full blood count, thyroid function, blood glucose and vitamin B12. Any underlying cause or aggravating factor should be addressed because symptoms may resolve if the underlying condition is treated.

The NHS suggests exercising during the day, going to bed and getting up at the same times, keeping the bedroom dark and quiet, a warm bath or heat pads on the legs before bed, walking, stretching or massaging the legs during symptoms, and distraction such as reading or puzzles. It advises avoiding caffeine after midday, alcohol for at least 2 hours before bed, big meals and strenuous exercise late at night, electronic devices right before bed and daytime naps, and getting help to stop smoking. NICE CKS gives a similar list and says that for mild symptoms explanation, reassurance and self-help may be enough.

• Preventing attacks: good sleep habits, less caffeine and alcohol, stopping smoking, moderate regular exercise.

• Relieving an attack: walking, stretching, heat, relaxation, mental distraction, massage.

The NHS says treatment depends on the cause: treating another condition may help, for example iron supplements if blood iron is low. Medicines that may be prescribed include pregabalin or gabapentin, painkillers such as codeine or tramadol, medicines for sleep problems, and medicines that increase dopamine such as co-careldopa or ropinirole for occasional use or if others have not worked. NICE CKS describes an alpha-2-delta ligand (pregabalin or gabapentin, off-label for this use) as an option for moderate to severe symptoms, recommends iron supplementation where iron stores are low, and says a short or intermittent course of a hypnotic may be considered for significant sleep disturbance.

NICE CKS also lists augmentation (symptoms worsening or starting earlier in the day on dopamine medicines), loss of efficacy and impulse control disorders among issues to watch for with dopamine agonists. Several of these medicines can cause drowsiness, dizziness or confusion in older people, so doses and combinations are chosen carefully by the prescriber. Referral to a neurologist or sleep specialist may be needed if there is doubt about the diagnosis or initial treatment fails. The NHS notes that if RLS affects mental health, talking therapies may help.