Restless leg syndrome sufferers - what does it feel like?

[AliciaWhiskers]

Just that, really.

I'm wondering if I'm getting symptoms of it, but it's started really suddenly and I don't know if that's normal or not?

I've had it for most of my life. It was at it's worst when I was pregnant. No amount of calf stretching helped. I believe mine might be affected by my digestion (specifically constipation or very dry stools) which makes it much worse, although I get it at other times. Always in the evenings at bed time, but I WILL get it on long car journeys or flights.

No itching, no burning, no ants. It feels like something is slowly pulling nerves in my lower legs. The longer it's allowed to pull, the more tension and the more nerve jangling it feels. The only way to stop the feeling is to move my leg, usually a kick or bringing my knee up.

This will NOT stop unless I get up and do something. It's associated with a sedentary lifestyle and it's recommended to do a little exercise an hour or so before bed.

Magnesium indeed helps a lot. 100% RDA tablets once a day. The added bonus is it also calms PMT.

My other cure will sound odd but I used it for years without fail. A bar of soap next to your skin will stop it happening and can also calm it when it's started after just a couple of minutes. Has to be a fresh bar, changed every few months. I put mine in my knickers, but you can use a sock or down your pyjamas or something.

Google it before you laugh!

Oh and I've had it in both my arms after a particularly tiring, stressful day. That was weird, flicking my arms and legs around in bed!

Soon as it starts just get up for five minutes and try again after.

I get it in the evenings sat on the sofa, DH usually has his legs across me. I just have to move my legs. I get it on flights too. It's partly the trapped feeling I'm sure, but I'm not a nervous flyer.
In bed I tend to twitch my ankles or wiggle my toes, no idea when it started though.

I've heard a bar of soap under mattress is supposed to help.

Mine was iron deficiency, my bloods showed this and iron tablets then better diet fixed it.

I can promise you that a bar of soap under the mattress will not help. How could it?

I have it on and off and when I haven't got it it is hard to remember how debilitating it is. I have tried everything but usually just end up pacing till I can fall asleep. It makes me want to stretch and/or jump up and move my legs all the time. I have tried magnesium, hot water bottles, cold spray, bandaging them tightly. All helps for a while but I ended up getting tablets last time because I wanted to chop my legs off, and as fast as it arrived it went again...until the next time

My mum really suffered with RLS and just recently her GP prescribed Mirapexin and it’s REALLY helping.

I got it during my pregnancies. The only way that I can describe it is "like a panic attack of the leg" It's very strange and just thinking about it has made me a bit twitchy even though I haven't had it for a long time.

eh i think when you feel it you know! it's not pain but it's not pleasure either nor is it neutral. quite unpleasant but long forgotten for me as memories of labour much more traumatic!

It's a horrible feeling but really hard to describe. It's like a dull irritation in my calf muscles and the only way to relieve it is to clench them until they hurt, but even then it comes straight back. For me it's usually a sign that my iron is low, but magnesium and potassium deficiencies are known triggers as well. I've had it most of my adult life and went through hell with it in pregnancy.

@AliciaWhiskers I’ve got congenital so I was born with it, unfortunately I don’t think it’s anything to do with levels, mine are spot on and I’ve always got restless leg syndrome. I think it’s just another symptom to add on to the already long list of thyroid issues.

I can't really describe it, it's not painful, it's more like an itch that you need to scratch. I get it when I'm iron-deficient so I take iron and magnesium from time to time.

Venagel! Horse chestnut gel from A Vogel. Only thing that has ever helped me.

Mine feels like the second before you get cramp or someone tangling the muscles down the back of my leg.

Something to try
magnesium didn't help at all
it drives me nuts.

Overwhelming need to move my feet. Used to just be when I was tired but it became much more frequent. It was quite debilitating and was stopping me sleeping and affecting me when i was out socially during the evening. I now take magnesium which is marvellous and really helps.

I’ve had it in and off for years. Magnesium was helping - until the heatwave!! My legs have been hell the last week. For me it’s not just the restless feeling, I get a deep painful ache in them too.

Mine almost feels like a cramp but without the pain. It is more of a sensation that a pain.

I get a kind of crawling tight feeling, and an overwhelming urge to stretch my hamstrings. Drives me nuts when it happens, but luckily it's fairly sporadic. (Got it a lot while pregnant though.) Like @YahBasic and others have said, magnesium helps. But when it's really bad I put my legs up the wall for up to 5 minutes, and then try to go to sleep before the feeling comes back!

Magnesium and Levothyroxine have an interaction, please look that up first.

If you can't take magnesium then try putting your legs up the wall for 10 mins before bed and the horse chestnut oil too.

There is an RLS charity called RLS- UK (Think there is a US equivalent too) and they have lots of helpful info and fundraise to help find a cure.
They talk about a thing called augmentation and rebound which is when you take medication for it and it helps to begin with but after a while it can make the RLS worse so deffo go read about that before taking any prescription meds for it.
I've had it for years, since my early 20's and now I'm pregnant it's ramped up so much. I get it in the evenings if I sit watching something or sit at all for any length of time with friends/ at the cinema etc. I can't even imagine how horrible it must be to have it all day and I am so sorry some of you are having to deal with that x

Just an uncontrollable urge to keep stretching my calves.

taking magnesium supplement helps a lot. Usually comes back when I’ve forgotten to take them regularly.

Potassium seems to help me more than magnesium. Potassium citrate tablets or coconut water. You could also eat bananas. Can also be triggered by low ferritin stores so if you’ve had blood loss then take iron tablets.
I find quad stretches before bed help. I have to wear a nightie rather than pyjamas and in the evenings can’t wear leggings or skinny jeans or tights.

It runs in my family & I get it if I'm lying on the sofa watching TV. Sometimes on flights too, but that's probably just the cramped conditions. For me it's just an overwhelming need to move my legs. If I get up & move around it goes & I'm fortunate that I don't get it at night. My father suffered before anyone knew it was a "thing" & was an early adopter of ropinerole which helped him. When abroad visiting an aunt recently (my dad's cousin) I discovered that she had it, as did her mother.