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Understanding RLS

What is RLS?

Restless Legs Syndrome (RLS), also known as Willis-Ekbom disease, is a neurological disorder characterised by an irresistible urge to move to stop uncomfortable or odd sensations. As it usually interferes with sleep, it is also considered a sleep disorder.

Although its name indicates that it affects the legs, RLS can affect the arms, torso, head, and other parts of the body. Moving the affected body part can temporarily suspend the sensations associated with RLS, thereby providing temporary relief.

While RLS is thought to affect up to 10% of people in the UK, it is a much misunderstood and often ridiculed condition. It is a "spectrum" disease with some people experiencing only mild symptoms or minor annoyance while for others it can be intolerable, causing major disruption to sleep and significant impairments in their quality of life.

Many of those living with RLS also experience varying degrees of pain. The condition can cause considerable discomfort during waking hours, particularly when the sufferer is in a relaxed state. However RLS is usually most acutely experienced in the evening or at night when people are trying to sleep.

In many cases RLS symptoms begin when a person goes to bed. Just as they are beginning to relax the symptoms appear and the person has no choice but to get out of bed to stretch - this can happen many times in one night. RLS can lead to long sleepless nights and daytime fatigue and invariably impacts on the quality of life of the sufferer, including their employment, and those close to them.

The sensations associated with RLS are most often compared to an itching or tickling in the muscles, like "an itch you can't scratch" or an unpleasant "tickle that won't stop." It has also been described as a 'creepy-crawly' feeling or like there's fizzy water inside the legs. The sensations typically begin or intensify when a person is in a relaxed state:


- Symptoms tend to be worse if a person is in a confined space such as in a cinema seat, a car or on an airplane, or when a person is relaxing, sitting down or in bed.

- Symptoms are usually worse in the evening. In many cases symptoms only occur in the evening, especially when the person is trying to get to sleep. The symptoms can make it difficult to relax and sleep, leading to tiredness the next day.

- Symptoms are usually eased briefly by moving, walking, massaging or stretching the legs or affected area. However, the symptoms tend to return shortly after resting again.

- Symptoms usually affects both legs but can affect other body parts too.

In addition, most individuals with RLS have limb jerking during sleep, referred to as Periodic Limb Movements (PLM), an objective physiologic marker of the disorder which is associated with sleep disruption.



Primary or idiopathic RLS has no known cause and usually begins slowly, before approximately 40–45 years of age. It is often genetically linked and it is likely that another family member may also share the condition. Primary RLS can come and go, sometimes for months on end, and is often progressive, meaning it gets worse with age.

Secondary RLS often has a sudden onset and is usually associated with another medical condition (e.g. iron deficiency anaemia) or the use of certain drugs. Some medications, such as the antihistamines in cold and allergy remedies, make the symptoms worse for some people (so while Benadryl tends to make most people sleepy, for example, it may actually intensify the symptoms in a person with RLS, making it harder for them to sleep.)

RLS may start at any age, including childhood, and is a progressive disease for some, while the symptoms may remit in others. It affects men and women, young and old, although it is most commonly seen in women over the age of 40. Symptoms will gradually worsen over time in about two thirds of people with the condition and may be severe enough to be disabling.

About one in five pregnant women also develop the condition, usually in the third trimester and often continue to experience symptoms after childbirth. In children, RLS is often wrongly identified as 'growing pains'.

RLS is often unrecognised or misdiagnosed but there is a growing awareness of the condition amongst medical practitioners. In many people, the condition is not diagnosed until 10-20 years after symptoms begin. However, once correctly diagnosed, RLS can often be treated successfully.

RLS-UK are here to lend an ear, offer advice and provide a community of people who understand what you are going through.

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