Restless limb syndrome but not only from resting

[java234]

I was diagnosed with RLS (sensory) about 15 years ago. I started in my legs and quickly progressed to my arms. The sensations range from severe stinging to pricking and itching usually on the sensitive skin on inside of arms and legs, but also sometimes on the outside. These sensation come to me after about 4 or 5 hours of sleep. I always manage to get to sleep by gently moving legs for 20 mins or so when I first get to bed. To combat this problem I always have to wear pyjama trousers. This helps the stinging alot. I can never leave my legs bare when sleeping. Another thing that helps me alot is a hot water bottle on the part of the skin that is stinging, but the bottle must be scorching hot to help it.

My problem is that the sensations not only come in the night when I am resting. They come after showing (the most painful of all). After changing clothes or generally changing atmosphere around my skin. The change of seasons is the worse time for me.

I don't take any conventional drugs. They all make me so that I cannot function and I have to work for my living. Homeopathy has sometimes helped me over the years, but usually after a few weeks it stops working. Mine gets much worse with anything cold. I must have boiling hot showers and lots of hot water bottles. Doctors seem unable to help as to why I have this strange condition. Does anybody else out there suffer from the pain after the shower (it can last when it is bad for up to an hour or even more.)

Good luck to us all!

[Pippins2]

Hi,I do not personally but I have of it before.One particular lady comes to mind her symptoms are always worse after showering and particularly after shaving her legs.She also gets the itchiness you mention,Although antihistamines are to be avoided gor RLS sufferers as they usually make RLS symptoms worse there are a couple that are considered "safe" gor the vast majority of people. She finds by taking an antihistamine before a shower it somehow helps her.Clarytin/Claritin is one of the safe ones , it may be worth a try.Good luck..Pipps

[java234 in reply to Pippins2]

Thanks for that bit of advice about Claritinj but anti histimines make me too dosy to be able to function. Better I go through the pain after a shower for an hour or so, then I am back to normal, whereas with the Clarintin I feel bad for the rest of the day.

Take care

[Pippins2]

Sounds obvious but you do not mention the urge to move,so strong it cannot br ignored.Do you get this symptom?

[java234 in reply to Pippins2]

No I don't get this symptom. Mine is sensory RLS which means just the painful feelings in the skin. But these painful sensations are relieved by movement. Whenever I am exercising or moving the pains go away completely.

I have just bought some magnesium oil spray which I am going to try. Anybody have good results with this? All the best.

[java234 in reply to Pippins2]

No I don't get this symptom. I only have the urgency to move when I actually have the pain. My shaking my legs and arms constantly the pain subsides but as soon as I stop shaking, it is back again. Mine is an unusual form of RLS from what I can understand as I don't have the classic symptoms. My symptoms come sometimes with resting but more with change of atmosphere around legs and arms and touch. After being intimate with my partner if my legs have been rubbed for example, I almost scream in pain for about half an hour afterwards. (one asks is the pleasure worth the pain!!!!!!). We have to keep up our humour with this condition or else we will all go barmy!!!

Take care

[gypsy49]

Mines like yours everywhere but worst in legs and arms some days not as bad as others sometimes much worst than others if that makes sense feels like all the nerve endings are on the surface or a form of prickly heat always know when im in for a bad night cos i itch all over. when ever my daughter stayed over with the children and she and i share the bed she says she can feel the bed quiver of course i don't know this till she told me feels like muscles on the move the whole time bloody pain in the backside . Have tried everything so far nothing works so the search goes on . Hope you find your peace with it x

[java234 in reply to gypsy49]

Have you noticed the days you are worse there is a South wind. I am much better when the wind blows North!!!!! Strange but true. Hope you also find some peace.

[gypsy49 in reply to java234]

ermmm no not noticed living out in the open (sticks) the wind blows in all directions it doesn't matter if its hot or cold . Hope you do too Java

[Pollypop in reply to gypsy49]

I have the same symptoms!!!! When I am cold, it's much worse!!!! I also find that when I am menstruating it is so much worse as well- I'm thinking this could be a hormonal thing?

Best,

Polly

[Cathy12345]

Sorry you can't take drugs. Have you looked at your diet? I found that cutting out lactose changed my life. I don't take so much medication. Also alcohol and coffee can be a trigger for me, though not for everyone. I also use pyjamas and a hot water bottle and find that sudden changes in weather temperature can be a trigger as well. I can't bear to be cold at night and will even avoid social events in cold church halls in the winter. I hope that my suggestions help.

Cathy

[java234 in reply to Cathy12345]

Thank you for suggestion but yes I have tried everything in the way of diet and have come to conclusion that coffee and alchohol must be avoided and also all processed foods. This is especially when I am in a crisis (which is usually when the seasons change, or sometimes at other times as well). I find I sometimes get much better for a few weeks, then it hits me again. I sometimes dream about the days 16 years ago before I had this condition. A few more things that I have found to get relief is not using a towel to dry after a shower, just a hair dryer. I swim in the sea almost daily in the summer and recently I have even had pain for an hour or so after coming out of the sea. Just a pulling, pricking feeling in all the nerve endings in tops of legs above knees and arms. By the way, the UVB rays from the sun also help me alot in summer. I live in a sunny country so this is a godsend sometimes.

My most intolerable and excrutiating pain is usually after the shower but if I have swum in the sea the same day beforehand, I can have a painless shower. Can anybody explain that one!!!!!! Imagine any doctor sitting listening to all this! I gave up with doctors years ago.

All the best to you and hope you find some helpl.