Understanding Restless Legs Syndrome

As many as 1 in 10 people in the UK are affected by restless legs syndrome at some point in their lives. Women are at a higher risk of developing restless legs syndrome than men. It is also more common in middle age, although the symptoms can develop at any age, including in childhood.

What is restless legs syndrome (RLS)?

Restless legs syndrome is also known as Willis-Ekbom disease. It is a common condition that affects the nervous system and causes an overwhelming, irresistible urge to move the legs when you are resting. You may also feel sensations such as:

• Itching
• Prickling
• Pulling
• Crawling
• Throbbing
• Aching
• Twitching

Symptoms usually occur in the late afternoon or evening and are often at their most intense at night. RLS is a sleep disorder, because the symptoms are triggered by resting and attempting to go to sleep, and it is also a movement disorder, because people with RLS are forced to move their legs in order to relieve their symptoms. RLS symptoms may vary from day to day, and from person to person. If you have moderate to severe RLS, symptoms might only occur once or twice a week. In severe cases of RLS, the symptoms occur more than twice a week and can be as much as every night in some cases.

Common characteristics of RLS include:

• Sensations begin after resting – they usually occur when you are inactive and sitting for extended periods of time.
• The discomfort eases when moving – this can mean that you may need to keep your legs moving in order to minimise or prevent the sensations. This might involve pacing the floor or constantly moving your legs while sitting down.
• Symptoms worsening at night – people with RLS are often symptom free in the early hours of the morning. Your symptoms may feel worse if you are particularly tired.

Prevalence and demographics

As many as 1 in 10 people in the UK are affected by restless legs syndrome at some point in their lives. The worldwide prevalence of RLS varies depending on the population studied and the diagnostic criteria used. However, it’s estimated that approximately 5-10% of adults may be affected by RLS to some degree.

Women are at a higher risk of developing restless legs syndrome than men. The exact reasons for this are not entirely understood. However, several factors may contribute to this gender difference:

• Hormonal factors – fluctuations in hormone levels, particularly oestrogen, may play a role in RLS. Women experience hormonal fluctuations throughout their lives during menstruation, pregnancy and menopause, which could influence the onset or the severity of RLS symptoms.
• Pregnancy – RLS symptoms often worsen during pregnancy, with up to one-third of pregnant women experiencing RLS. The exact cause is not fully understood, but hormonal changes, iron deficiency and increased blood volume during pregnancy all may contribute.
• Iron deficiency – iron deficiency is a known risk factor for RLS. Women are more likely to experience iron deficiency due to menstruation and pregnancy. Iron is important for dopamine production in the brain, and dopamine levels are thought to play a factor in RLS.
• Lifestyle factors – certain lifestyle factors such as smoking, caffeine consumption and a lack of exercise have been linked to RLS. These factors may be more prevalent in women.
• Genetic predisposition – there may be a genetic component to RLS. Some studies have suggested that genetic factors associated with RLS may also be more prevalent in women.
• Other health issues – women are more likely to have other conditions associated with RLS, such as varicose veins and rheumatoid arthritis, which may make RLS symptoms worse.

Symptoms and diagnosis

If you think you have symptoms of restless legs syndrome, you should see your GP. Your GP should be able to diagnose the condition, but in some cases you may be referred to a neurologist if your situation is more complex.

There is no single test for diagnosing restless legs syndrome. A diagnosis will be made based on your symptoms, medical history and also family history, a physical examination, and test results. There are four main criteria your GP or specialist will look for to confirm a diagnosis, which include:

• An overwhelming urge to move your legs, usually accompanied by an uncomfortable sensation, such as itching, aching or tingling.
• Your symptoms begin or become worse when you are resting or trying to go to sleep.
• Your symptoms are relieved by moving your legs or stretching them.
• Your symptoms become worse during the evening or at night time.

Your healthcare provider may ask you:

• How often your symptoms occur.
• How unpleasant your symptoms are and how you are managing them.
• If your symptoms cause you significant distress.
• If your sleep is disrupted, and how tired this makes you feel the following day.

Potential causes and triggers

While sometimes associated with other medical conditions, the cause of most cases of restless legs syndrome is unknown. Understanding the potential causes and triggers of RLS can help individuals manage their symptoms more effectively. There are several factors believed to contribute to its development or trigger its symptoms. These include:

• Genetics – there is evidence suggesting a genetic component to RLS, as it often runs in families. Researchers have identified specific gene variants associated with an increased risk of developing RLS.
• Lifestyle factors – certain lifestyle factors may exacerbate RLS symptoms, including stress, lack of exercise, excessive caffeine or alcohol consumption, and irregular sleep patterns.
• Brain chemistry – imbalances in certain neurotransmitters, such as dopamine, serotonin and iron, may play a role in the development of RLS. Dopamine is involved in regulating muscle movements, and disruptions in its function can lead to RLS symptoms.
• Iron deficiency – low levels of iron in the brain or a disruption in how iron is processed by the brain can contribute to RLS. Iron is important for dopamine production and regulation, and a deficiency can affect dopamine levels and exacerbate symptoms.
• Pregnancy – RLS symptoms can occur or worsen during pregnancy, particularly in the third trimester. Hormonal changes, iron deficiency, and increased blood volume during pregnancy may contribute to RLS symptoms in pregnant women.
• Medications – some medications have been linked to triggering or worsening RLS symptoms. These include certain antidepressants, antipsychotics, antihistamines and anti-nausea drugs.
• Certain medical conditions – RLS can be associated with certain medical conditions, including peripheral neuropathy, kidney failure, diabetes, Parkinson’s disease and multiple sclerosis. Treating the underlying condition may help to alleviate RLS symptoms.
• Age – while RLS can occur at any age, it tends to become more common in older age. RLS can also affect children and young adults.

Impact on quality of life

As RLS is a sleep disorder which can affect the quality and amount of sleep you are getting, it can cause you to experience the following:

• Fatigue and daytime sleepiness.
• Difficulty concentrating.
• Decreased productivity.
• Impaired memory.
• Changes in mood.
• Depression and anxiety.

Symptoms can sometimes appear to get better or reduce for periods of time; however, symptoms usually become worse over time. The sleep disruption associated with RLS can also lead to other sleep disorders becoming worse or even happening for the first time, for example sleep terrors or sleepwalking.

There is also a link between RLS and insomnia. RLS can contribute to insomnia by causing discomfort or pain in the legs that interferes with falling asleep or staying asleep. Insomnia can make RLS symptoms worse by increasing stress, fatigue and muscle tension, which may worsen the sensations experienced in RLS. The combination of RLS and insomnia can create a vicious cycle, where each condition reinforces the other, leading to worsening sleep disturbances and decreased quality of life.

Getting the right amount of good quality sleep is vital to both our physical and mental health. Chronic sleep deprivation can be detrimental and has been associated with hypertension, heart attacks and stroke, obesity, diabetes, depression and anxiety, decrease in brain function, memory loss, a weakened immune system, and lower fertility rates, as well as other psychiatric disorders. Some of the most common effects of sleep deprivation include:

• Cognitive impairment – sleep deprivation can impair cognitive functions such as attention, concentration, memory and decision-making. This can lead to decreased productivity, inability to concentrate at school or work, and increased risk of accidents.
• Mood disturbances – lack of sleep can lead to irritability, mood swings, increased stress, and even symptoms of depression and anxiety.
• Physical health problems – chronic sleep deprivation is associated with an increased risk of various health problems, including obesity, diabetes, cardiovascular disease and a weakened immune function. It can also contribute to chronic conditions such as hypertension and metabolic syndrome.
• Impaired immune function – sleep plays a crucial role in maintaining a healthy immune system. Sleep deprivation can weaken the immune response, making people more susceptible to infections and illnesses.
• Increased risk of accidents – lack of sleep can impair coordination, reaction time and judgement, increasing the risk of accidents and injuries, especially when driving or operating heavy machinery.
• Difficulty with social interactions – people who are sleep deprived may experience difficulties in social interactions due to irritability, moodiness and decreased empathy.

For further reading about sleep and mental health, please see our knowledge base.

Treatment and management

RLS can be treated and managed through a variety of approaches. Some of these may include:

• Lifestyle changes – doing regular exercise, particularly activities like walking, stretching, yoga or cycling, can help to alleviate symptoms.
• Avoiding caffeine, nicotine and alcohol – especially in the evening, as they can make symptoms worse.
• Establishing a regular sleep pattern – ensuring adequate sleep hygiene can be beneficial as being overtired can worsen symptoms.
• Dietary adjustments – ensuring an adequate intake of iron, folate and magnesium, as deficiencies in these nutrients can contribute to RLS symptoms. Foods rich in these nutrients include leafy greens, nuts, seeds and lean meats.
• Some people find that consuming foods rich in vitamin B12, such as fish, poultry, meat, eggs and dairy products, helps to relieve their symptoms.
• Complementary therapies – massage, acupuncture and hot or cold packs applied to the legs may provide temporary relief for some people. Transcutaneous electrical nerve stimulation (TENS) has shown some promising results in reducing RLS symptoms in some studies.
• Behavioural therapies – cognitive-behavioural therapy (CBT) and relaxation techniques may help manage RLS symptoms, particularly if anxiety or stress make your symptoms worse.
• Painkillers – these may be recommended in some cases of RLS.
• Medicines for aiding sleep – these may be recommended if your sleep is significantly disrupted by your symptoms of RLS.

Coping strategies

Restless legs syndrome (RLS) can be a challenging condition to manage, but there are several coping strategies that may help to alleviate symptoms. These may include:

• Healthy sleep habits – establish a regular sleep schedule and create a relaxing bedtime routine in order to improve sleep quality. You should avoid caffeine, nicotine and alcohol as much as possible, as they can worsen RLS symptoms. Lifestyle choices like excessive caffeine or alcohol consumption, particularly close to bedtime, mean that people can experience shorter and poorer-quality sleep which can increase the frequency of RLS.
• Exercise – regular exercise can have several positive effects on sleep, and the relationship between physical activity and sleep is well-documented, including the regulation of circadian rhythms, reduction in anxiety and stress levels and enhanced melatonin production which is a hormone that regulates sleep-wake cycles. Intense exercise close to bedtime might exacerbate symptoms for some people, so it is best to exercise earlier in the day.
• Getting outside – exposure to natural light during outdoor activities can also contribute to melatonin regulation.
• Massage – gentle massage of the legs, particularly before bedtime, can help relax the muscles and alleviate RLS symptoms.
• Having a hot bath in the evening – this may help to relax your muscles.
• Stretching – incorporate regular stretching exercises into your daily routine, focusing on the muscles in your legs. Stretching can help reduce muscle tension and improve circulation, which can potentially alleviate RLS symptoms
• Leg elevation – elevating your legs while sitting or lying down may help improve the blood flow and potentially alleviate RLS symptoms.
• Relaxation techniques – practise relaxation techniques such as deep breathing, progressive muscle relaxation, meditation or yoga to reduce stress and promote relaxation, which can help manage RLS symptoms.
• Iron supplements – if your healthcare provider determines that you have iron deficiency, they may recommend iron supplements in order to help alleviate RLS symptoms. It is essential to consult with a healthcare professional before taking any supple

RLS UK provides help and support to people living with restless legs syndrome (RLS) and periodic limb movement disorder (PLMD).