Restless legs

Some people with Parkinson’s experience restless legs syndrome.

Restless legs syndrome is a condition that causes an overwhelming urge to move your legs. It is also known as Willis-Ekbom disease.

What is restless legs syndrome?

Restless legs syndrome is an overwhelming desire to move your legs when you’re awake. It happens mainly when you are resting, usually during the evening and at night.

Your healthcare professional may also advise you to increase your iron intake by taking a supplement or eating iron rich foods, such as dark green vegetables, prunes or raisins.

It is experienced by more women than men in the general population and can be a common problem for people who have Parkinson’s. Symptoms can start at any age, but it is more common as you get older.

Restless legs syndrome can be mild, moderate, severe or very severe based on the strength of the symptoms, how often you may experience them and if they affect your ability to carry out daily tasks.

Some people experience it occasionally, while for others it happens every day. It happens most often when you are resting – for example, when you are sitting watching the TV or lying in bed.

What causes restless legs syndrome?

In most cases, there is no underlying cause for the condition. This is called idiopathic (or primary) restless legs syndrome.

Current research suggests that idiopathic restless legs syndrome can happen when people have low iron levels in the brain, which may affect how the chemical dopamine is processed.

You are more likely to have idiopathic restless legs syndrome if people in your family have had the condition.

People with Parkinson’s have secondary restless legs syndrome – this means there is an underlying cause for the condition. Secondary restless legs syndrome is also linked to pregnancy, iron deficiency and chronic kidney failure. If you are concerned about any of these, speak to your GP, specialist or Parkinson’s nurse.

What are the symptoms?

Symptoms include tingling, burning, itching or throbbing in your legs.

People have described it as a ‘creepy-crawly’ feeling, or that it feels like they have fizzy water in their veins. You may also have pins and needles in your calf muscles and need to walk around to get relief.

Most people’s symptoms are not severe or frequent enough to need medical treatment. When it happens can vary from person to person.

To get some relief you could also try:

  • massaging your legs
  • relaxation exercises, yoga or t’ai chi, for example
  • taking a warm bath in the evening
  • applying a hot or cold compress to your legs
  • walking and stretching

The symptoms of restless legs syndrome generally occur, or get worse, in the evening or at night, so the condition can have a major effect on your sleep.

This lack of sleep can cause daytime tiredness and sleepiness. Be aware that people with restless legs syndrome are also more likely to experience anxiety and depression.

Some medications, smoking, caffeine, alcohol, being overweight, and a lack of exercise may make symptoms worse.

How is it diagnosed?

If you are experiencing symptoms, you should make an appointment to see your GP. They can refer you to a specialist if necessary.

Before your appointment, you may find it useful to monitor your symptoms by keeping a diary of when and how they affect you.

To assess your symptoms, your healthcare professional may ask you the following:

  • How often do your symptoms occur?
  • How uncomfortable are your symptoms?
  • Do your symptoms cause you a lot of distress?
  • Is your sleep being disrupted?
  • Do you have a family history of restless legs syndrome?

There isn’t a single test to diagnose restless legs syndrome, but there are some basic things a healthcare professional will look for, including:

  • an overwhelming urge to move your legs, along with feelings of itching or tingling
  • symptoms that happen or get worse when you are resting, especially while sitting or lying down
  • symptoms that get better when you move or rub your legs
  • symptoms that tend to occur or get worse in the evening or at night

Your healthcare professional may also consider:

  • whether you find your symptoms improve when you take your Parkinson’s medication
  • if you experience periodic limb movements of sleep. This condition causes involuntary arm and leg movements while you are sleeping, but may cause you to wake up briefly
  • how the condition develops. Restless legs syndrome is normally ongoing, but sometimes symptoms may only happen from time to time
  • your age when diagnosed. Most people are middle-aged or older, but symptoms can start at any age
  • symptoms such as numbness and tingling, or a burning or shooting pain in your hands or feet. This could be a sign of damage to your nervous system, which could be a sign of another condition such as peripheral neuropathy
  • disturbed sleep, usually insomnia. Insomnia is a sleep disorder that causes problems getting to sleep or staying asleep

Depending on your medical history, you may be sent for further tests to rule out other underlying conditions. Sleep tests may be recommended if your sleep is very disrupted. These can help diagnose periodic limb movements of sleep.

Find out more about sleep and night-time problems in Parkinson’s.

Is it difficult to make a diagnosis in people with Parkinson’s?

Because there isn’t a specific test for restless legs syndrome, it can be difficult to diagnose the condition. Symptoms can be brief or only happen from time to time. Also, the condition can cause discomfort at night time and this can be mistaken for arthritis in people with Parkinson’s.

Rarely, a person with Parkinson’s may experience disturbed sleep due to dyskinesia. These are involuntary movements caused by Parkinson’s medication. If you are concerned about this, speak to your GP, specialist or Parkinson’s nurse (if you have one). Do not stop taking your Parkinson’s medication.

How is restless legs syndrome treated?

Your treatment will depend on how severe your symptoms are and what may be causing them.

Lifestyle changes

Mild symptoms of restless legs syndrome may be treated with lifestyle changes. There are a number of things you can try, such as:

  • massaging your legs
  • walking and stretching
  • applying a hot or cold compress to your legs
  • relaxation exercises – yoga or t’ai chi, for example

Find out more about complementary therapies and Parkinson’s.

You might also find the following helpful:

  • taking a hot bath in the evening
  • avoiding alcohol, caffeine and smoking at night
  • establishing a regular sleeping pattern
  • having a cool, comfortable sleeping environment

Find out more about sleep and night-time problems in Parkinson’s.

Diet

Your healthcare professional may check the ferritin levels in your blood. Ferritin is a protein that stores iron. If you have low ferritin levels, your body will not have lots of iron stored.

You may be advised to increase your iron intake by taking an iron supplement, or eating iron-rich food. This includes:

  • dark green vegetables
  • iron-enriched bread
  • apricots
  • raisins
  • prunes

A dietitian will be able to give you advice on this.

Find out more about diet and Parkinson’s.

Medication

Moderate to very severe symptoms are normally treated with medication.

Levodopa is a chemical building-block that your body converts into dopamine. Levodopa occurs naturally and taking it as a drug treatment boosts the supply. It may be recommended if you only have symptoms now and again.

Dopamine agonists are usually prescribed if you are having more frequent symptoms. Dopamine agonists act like dopamine to stimulate your nerve cells.

Painkillers like codeine or tramadol can be prescribed if you are in pain. Your doctor may also recommend anticonvulsant drugs to relieve symptoms.

Sleeping pills may be helpful if your symptoms flare up. Usually you will be prescribed a low dose for a short period of time only. In general, prescription sleeping tablets are safe and effective when taken as prescribed. However, speak to your healthcare professional if you have any concerns.

Find out more about drug treatments for Parkinson’s.

Useful contacts for restless legs syndrome

RLS-UK

This is a charity dedicated to helping people who experience restless legs syndrome. It has a useful FAQs section and a forum.

 

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