Did you know almost a quarter of people with multiple sclerosis experience restless legs?

What is that you may ask? Well, it’s a condition that occurs in people who do not have a diagnosis of multiple sclerosis (MS), but it may surprise you to know that almost a quarter of people living with MS experience restless leg syndrome (RLS) as a symptom of their condition. RLS is often characterised by an uncontrollable urge to move the legs and can severely impact the quality of life. Symptoms include strong urges to move the legs and unpleasant or uncomfortable sensations accompanying the urges as well.

Today is Restless Legs Awareness Day (23 September 2022), so we asked the MS-UK Helpline team to answer one of your questions about the condition and what you can do about it.

Question

I know that people with MS get RLS. My legs can jerk and twitch around sometimes, and I always have odd feelings. I’ve noticed it’s more of an issue during the summer and sleeping has been a problem. Does this mean I have RLS?

Answer

We’re sorry to hear sleeping has been an issue for you. It can be hard to ‘unpick’ whether you have RLS (also known as Willis Ekbom disease) or whether you are experiencing spasms and pain connected to your MS. Both are very similar in the way you may be feeling them, but clinicians may label them differently and possibly treat them contrastingly.

RLS most commonly affects the legs (the name gives it away) but it can also affect other parts of the body with altered sensations (tingling or itching) as well as the sudden ‘need’ to move or jiggle.

Speaking broadly (and we recognise that we are all different) MS related spasms will be unconscious and RLS connected movements will be bought on by a conscious impulse (the ‘need’ to move). RLS issues are usually worse at night, whilst MS spasms and altered sensations can happen day and night.

It is worth speaking with your MS team. As the helpline team often suggest, there may be value in keeping a symptom diary, so you and your team can spot any patterns or triggers and there may well be medication to help.

There is also a range of self-management techniques that can help you to live well with RLS including mindfulness, exercise, and dietary changes.

For further information or guidance on RLS, contact the MS-UK Helpline by calling 0800 783 0518 or emailing info@ms-uk.org. You can also use the webchat function on our website. The helpline is open Monday to Friday at 10am-4pm.

For more information on restless leg syndrome please visit the charity RLS-UK, a charity supporting people with restless leg syndrome.

For more information on spasms, spasticity, pain and altered sensations, please see MS-UK’s Choices booklets and download your free copy of our booklets.

You can also download our blank symptom diary to track your symptoms.