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The Constant Frustration of Restless Legs Syndrome

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Huh?! People keep telling me to relax, take a bit of time out, chill! My massage therapist flops my arm around telling me to relax it. I barely know what that means. I wake during the night with clenched fists and have to actively focus to unclench them. Relaxation does not come naturally to me. Not at all!

I have restless legs syndrome – also known as Willis-Ekbom disease. (I suspect they gave it a new name so it sounds more impressive. It doesn’t help – everyone still calls it “restless legs.”) Now I have no idea if my permanent state of anti-relaxation is related to the RLS, but I wouldn’t be one bit surprised if it is.

Statistically, many people have mild cases, and even more people develop RLS of varying degrees at different times in their life, but there are a small number of us who have chronic, life-impacting restless legs, and it is incredibly un-fun.

The creepy-crawly, butterflies-flitting-around and worms-wriggling-up-and-down-the-inside-of-your-legs feelings accompanied by aches, cramps, muscle spasms, tingling sensations, electric shocks and/or nerve pain is pretty much impossible to explain. All these are just words. Words can’t accurately convey sensation. How do you explain the taste of a banana to somebody with no taste buds? You can explain texture, but that doesn’t convey the true taste of a banana. You can explain creepy-crawly cramps in your legs, but that doesn’t convey the true misery of restless legs.

The urge to move the legs is unbearable. Yes, you can hold back for a while, just like you can hold your breath for a while. Eventually, one way or the other, your body is going to force you to take action. There is no arguing with inherent biology. The worse the RLS, the more urgent, incessant and frequent the need to move.

It is well documented that for most people with RLS, the condition is worse at night, worse when at rest or trying to sit still and can be exacerbated by things like caffeine or alcohol. So if I were to have a couple of glasses with champagne with a friend, come home and have a cup of tea then jump into bed, I’m going to be wiggling around like a toddler in desperate need of a potty-trip. For hours. And every passing minute will be worse than the last. My level of exhaustion will be utterly irrelevant.

If I try and stay in bed to sleep, eventually the restlessness will turn into a painful, throbbing ache, buried deep inside every bone from my ribs to my calves (I am fortunate to be someone who only experiences RLS in the lower half of my body – some individuals have it everywhere). Then the nerve pain will begin, and the electric shocks will start in my legs. It’s pretty hideous.

As you can imagine, this doesn’t make for a very restful night’s sleep. Without medication, every night is like that for me – with or without champagne and chocolate.

About ten years ago – maybe less? – I was eventually put onto prescription medications for RLS that changed my life. Prior to that, there was nothing available except sedatives – which if taken regularly can cause you to develop a tolerance, therefore making you need higher dosages, and it can be potentially very addictive. Naturally I wasn’t keen to add “prescription drug addict” to my list of problems. In the two years pre-medication, I was unable to sleep more than 20-30 minutes at a time, maybe four or five times a day. On a good day. I would average two to three hours of sleep in every 24 hours. Some days I got zero sleep. I was utterly, utterly exhausted. And yet I couldn’t sleep at all. I was catching up on a lot of late night TV and solitaire card games, which was of precious little comfort.

Restless Legs Syndrome may be a benign condition – i.e. it’s not terminal – but the side effects of severe sleep deprivation over extended periods of time are extremely frustrating.

These days, my RLS is extremely well managed. In addition to non-medical treatments such as stretching, cold packs, magnesium tablets and avoiding caffeine and alcohol, I am eternally grateful to the researchers and medical practitioners who found alternative uses for Parkinson’s and epilepsy medications.

Even so, I still fidget all the time, I never feel relaxed, I get anxious at the thought of having to sit in a cinema or a concert, there is a constant feeling of tension and pulsing across my lower back and I always worry people notice me twitching incessantly. I have become an expert at doing pelvic floor exercises or vigorously tapping my big toe inside my shoe.

As far as relaxation goes? I feel most relaxed when I’m stretched like a giant elastic band over a huge fit ball. On the rare occasions when I have required some kind of heavy duty painkillers, I have for brief periods of time understood what people actually mean by relaxation – a body that just sinks into the mattress and a mind that just does nothing. Nothing at all.

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Originally published: May 18, 2017
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