RLS and heat

[Bruxelles]

Hello everyone,

I would like to share my latest experience just in case it helps someone somewhere to get a little relief from this horrid problem.

Having tried a lot of thingsincluding prescription drugs with no success and augmentation with prescription drugs, I have found that keeping my legs very warm seems to help, particularly if I act as soon as I get a twinge or earlier.

It’s by no means a cure but I do find it helps:

I have a variety of different thicknessses of pyjama trousers, slippers, socks and legs warmers which I use to keep my legs warm. (Not forgetting knee rugs and electric blanket!) I wear leg warmers most of the time when in the house sometimes just round my ankles and sometimes up to my knees. In the evening when I sit I put them on over my tights and sometimes need a knee rug also. It does seem to help to calm my legs.

I went to my doctor last week to ask for a blood test for Magnesium, Potassium etc. balance but he couldn’t understand why and I was so tired I gave up. I told him about how heat helps my legs in case it could help someone else and he looked at me as if I was crazy so I didn’t insist!

Hope you all manage to get some sleep tonight. Warm wishes

[Marilynn]

Hi BruxellesI hardly ever comment on here but its becoming more obvious to me that people have different experiences with RLS and efforts to help it so if heat works for you thats great. I think everyone reacts differently to different methods. For me I find too much heat around my legs makes me worse. I do suffer almost constantly with cold feet though but its mostly during the day. Right now I'm coming off pregabalin which I've probably been on for around a year. Its been the best thing for me and has helped enormously. I've had RLS for years and its the only thing that's really worked. I think I must have tried everything. I'm coming off it though because of some side affects one of which is weight gain. However I suspect I'm going to have to go back on it because coming off it all the old problems are back so its deciding which is worst.

Much to some peoples surprise (my own too) I once found that drinking a cup of coffee when mine got bad used to help. Much to my surprise some others had had a similar experience. So I think its different things for different people. Hope you can get some relief.

[Bruxelles in reply to Marilynn]

Hi Marilynn,Yes I agree, different things work for different people. I just thought I would add what seems to help me a little bit at least. Some people find cold helps them. It is a very strange thing because if I get the wrong thickness on my legs and they get too hot it can start them off also. Do you find different parts of your legs feel different - for example I get very cold knees even if my legs feel hot or hot feet and cold legs and vice versa?

I’ve tried Pramiprexole but got augmentation so have stopped that. Like you, I have to decide which is the worst option, try something else like pregabalin or struggle on with very little sleep which is unbearable as you know I’m sure.

It is so difficult isn’t it as there are so many unknown factors.

I do avoid tea after midday now or I was a big tea drinker.

Well, I hope you get a reasonable, good if possible, night’s sleep.

[Marilynn in reply to Bruxelles]

Yes its such a pain. I've always got cold feet even when the rest of me is fine. Its so frustrating trying to get the right help. I've found pregabalin to work better than anything but as always its the side effects that get to you.. hope you get sorted.

[RayRLS]

Thanks! I've tried with warm water on my legs, as warm as I can resist, getting out of bed at night when tingling begins and it has helped much.

[Bruxelles in reply to RayRLS]

I’m so pleased you found some relief with warmth.There are electric heat pads one can buy. Very useful in the evening and I also have an electric blanket on my bed which I use when I need too. I don’t keep it on all night though.

I find I need to let the heat really penetrate my legs.

Good luck!

P.S. I got the pyjamas wrong tonight and woke at 2.30, legs cold and beginning to twitch. So change of pyjams plus leg warmers and walk around. Now 5.12, legs calmer so back to bed, will use elec blanket a while and hopefully sleep a bit more.

[Goldy700]

I find both hot and cold seem to help. I have had bad nights where I have gone out and walked on the freezing cold grass barefoot and it worked to stop the RLS very well. Also I find if I have a very hot bath it works as well. I am thinking of getting an electric blanket to see if that will work.

[Bruxelles in reply to Goldy700]

Cold doesn’t work for me - it makes my legs incredibly painful. I have an electric blanket and it’s wonderful. Going back to bed to use it now as I got the pyjamas wrong last night and have had to get up. Changed to thermals and leg warmers and been walking around so it’s getting bit easier now. I really have to use heat as soon as legs begin to feel a bit cold. As for the electric blanket it works really well for me. Sometimes I go up in the day time and put it on for a while just to make my legs stop. Good luck

[Hidden]

I’ve found the same - hot baths help but I also do sometimes walk outside on the cold surfaces during the night.

[Bruxelles in reply to Hidden]

Very occasionally my feet get too hot and I walk on the tiles in my bathroom but it very rare. Cold water on my legs makes them very painful.

[Myclarence123]

I agree keeping the feet and legs warm helps but also on other occasions a cold bed helps?!

[Bruxelles in reply to Myclarence123]

Yes it seems to be a very fine balance. Occasionally my legs are too hot and I have to find a cold spot in the bed, but for me that’s very rare.

[Spurdog1]

hmmm! maybe it's down to regulation of temperature, too hot when cold day, too cold when hot day

[lorrinet]

I can't bear the heat in bed, especially on my feet, in the summer. I have to stick them out of the bed. RLS definitely worse in hot weather but hey, we're all different and have various experiences of this wretched condition.

[Bruxelles in reply to lorrinet]

Sometimes I have to have leg warmers on for my legs which are cold but at the same time my feet are hot so I have those poking out of the bed clothes. I get very cold knees too. Does anyone else?

[Bruxelles]

Funny how we’re all so different. When I went to Neurologist ((I’ve given up on him now!) he told me to shower my legs in freezing cold water for 5 minutes before I went to bed. I tried 2 or 3 times but it was agony - my legs were really painful.