Restless legs syndrome – my menopause nightmare

If you’re menopausal then you’ll already know how difficult sleep can be. Hormone changes, hot flushes and mood swings all have an impact on how many hours of kip we get and insomnia is a key symptom of both the menopause and perimenopause. But did you know about RLS?

Restless leg syndrome (RLS), or Willis–Ekbom Disorder, to give it its proper (and relatively new) name, has always been in my life – and it’s getting worse now I’m menopausal.

If you’ve never heard of it (or suffered), you don’t know how lucky you are. But if you’re relaxing and your legs feel uncomfortable and you feel you have to move them to help, you may have RLS.

For me, it feels like a deep, deep ache in the muscle – almost like a hot needle is stabbing into me – with a throbbing to go with it. It’s a difficult sensation to describe because it’s not a pain but God, it hurts.

My sister, who only developed this with the menopause, says it feels as if she has drunk too much Coca-Cola and is hyper. Other people describe it like an itch or a tickle, or as if their muscle is cramping, or they feel a burning.

Whatever it feels like, the only relief is to move your leg. And the bliss is wonderful – for the few seconds it lasts, because then the itch/ache/throb/burn/fizz moves to another part of your leg and you start all over again.

Mr 50Sense says it’s like sharing a bed with Michael Flatley.

This generally happens in bed, but it can occur whenever you’re resting (day or night, but growing worse at night) or if you’re in an enclosed space – a bus or a train or an airplane seat (long-haul flights can be a real problem). Also, restless legs syndrome is a misnomer as it can occur in any part of your body. I’ve had it in my elbow!

As to why this happens – no one is certain. Low iron levels are often cited and magnesium can work wonders for some people. However, blood tests show no problem in me (when I lived in Madrid, the doctor told me I had so much iron in me I could be a man!) and taking magnesium supplements had no effect. I tried a magnesium spray that helped at times and while I advise it to people with mild RLS, it didn’t stop the jerk enough for me to consider it a worthwhile treatment.

More evidence suggests it’s a problem with dopamine levels, which control muscle movements. Because this falls at night, that’s why we get RLS.

My sister swears by putting a pillow below her knees to lift her lower legs. I’ve found that putting my legs out in the cold can help. Walking, yoga and stretching can all help too. But it doesn’t appear that there’s a one-size-fits-all cure.

I have primary RLS, which means it’s genetic – my Nana had it – and I’ve had it so long I can’t remember when it started. I certainly had it when I was a young girl, so your child’s “growing pains” may be real.

I had no idea it was a thing because it’s so rarely talked about. It wasn’t until I was in my mid-30s, while working on a story, that I learnt that jumping-jack-legs at night wasn’t normal. Sadly, this is still largely the case. Although restless legs syndrome has been known about for centuries, it was only in 1945 that it was given a proper medical review and then it was ignored for another 40-odd years (unsurprisingly – did I mention that RLS affects women twice as much as men? My Nana was sent away with a flea in her ear when she went to the doctors to ask about it). 

Thankfully, that has changed a bit. When I went to my doctor a few years ago, after a new medication exacerbated my RLS and I’d had little sleep for a week, she knew about it and was able to prescribe ropinirole. It’s a little scary that this is also used for the likes of Parkinson’s disease and we had to experiment with the dosage because it made me the walking dead at first, but to steal from Charlton Heston: “From my cold dead hands.” There’s no way they’re taking this off me.

Now I’m menopausal, however, my RLS is getting worse, especially since I went on HRT. Restless legs can affect many peri-menopausal and menopausal women – one study found 69% of post-menopausal women considered their symptoms to be worse than before the menopause. It’s thought that it’s to do with falling oestrogen levels, but the links between RLS and women’s hormones is unclear. (You’ll notice there’s a lot of this in this post, together with “it’s thought” and “evidence suggests”. Sadly, restless legs syndrome isn’t a sexy topic for the medical world and attracts little attention or research, despite occurring in 7-11% of the population in the West. Did I mention most sufferers are women…?)

So now I have a dilemma. After the problems with getting my ropinirole right to begin with, I’m loath to up the dosage again and I am considering whether I want to continue HRT because of this.

Yes, honestly. After all the hell I went through with the menopause. That’s how bad it can be.

RLS sounds like such a silly, little thing but it is truly life-changing. Not only does it hurt, it disrupts my sleep and Mr 50Sense’s (I discovered just this month that I continue to kick when I’m asleep). Obviously, that has a negative impact the next day – I’m emotional, grumpy, irritable and want to eat everything. Plus concentrating at work is more difficult. I certainly don’t want it to be a regular in my life again.

And I don’t even have it that often – three or four times a month now. If you check out the forum on RLS-UK, there are some heart-breaking tales of people who haven’t slept for weeks on end because it is every night. Some people have also suffered decades before getting a diagnosis because doctors either don’t know about it or consider it a trivial matter.

Well, if there are any doctors reading this, NOT GETTING SLEEP IS NOT A TRIVIAL PROBLEM. The likelihood of developing depression increases 2-4 times among people with RLS. I don’t think this is just down to lack of sleep. Unless you have RLS, the feeling is impossible to imagine, leaving sufferers feeling very alone. Add to this the lack of interest in the medical world and it compounds this feeling.

Also, you may not only be sufferering from restless legs. RLS can be caused by other health conditions that may need treatment. So if any of this is ringing bells, please go see your doctor – and don’t be sent away with a flea in your ear like my Nana. Help is available.

And if you’ve had any experience of this, please let me know below. Like everything, the more we talk about it, the more powerful we become.

If you’re after more information, the RLS-UK website is invaluable. They also have a RLS-UK Facebook page and are on Twitter. Please give them a follow.

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