Does anyone else suffer sensory problems with their RLS?

Hi,

I’m a UK male in my mid 30’s and have been diagnosed with RLS about 2 years ago, my symptoms cover most of my body. I have all the classic fidgeting, uncomfortable sensations in my legs but also have a whole range of abnormal sensations all over my body, which include crawling, tingling, etc.

My sensory sensations on my skin all seem exaggerated e.g. things touching my skin can be really uncomfortable such as clothes etc. Also the feeling of hot and cold on my skin are also exaggerated, especially in my arms and leg, which can at times feel really hot. The most unusual sensation I have is when anything metallic touches my skin e.g. belt buckle, as metal objects feel ice cold and this is extremely unbearable.

Does anyone else experience symptoms like this? I have looked at many websites but can’t seem to find much information on other people suffering like me.

I take 250Mg Pregabalin, which slightly dulls the sensations throughout the day and 0.5 Clonazepam to help me sleep, both of which I take at before bed. I have tried a lot of other different drugs, including the dopamine patches etc. without any success.

I am fearful that this condition might lead onto something more serious like Parkinson’s or Multiple Sclerosis and worry that my children may get this.

There is so little understood about this condition and the treatment so haphazard that I feel truly lost.

11 Replies

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  • RLS does not lead to Parkinson's. lots of people think this, because the same meds are used in many cases, but they are totally separate in nature. And, it certainly not Multiple Sclerosis. The other way around, from what I understand. I have friend who's husband has MS, and they have done a lot of homework. HE has developed RLS, but RLS does not lead to those, but lack of sleep can affect glucose, insulin resistance and cardiac issues. AND, I do know that RLS is around 65% genetic, unfortunately. So, the thing to worry about is the genetic part of it, but not PD or MS. rls.org and rlshelp.org are the most helpful web sites to me, anyway.

  • Thanks Willie416 for your comments, the Willis-Ekbom Disease Foundation is a really good resource. It’s hard to not think this disease will lead onto something else when the symptoms are so acute.

  • I have all the same symptoms.

  • Yes and me. Anything touching my legs is intolerable and I also get hot flushes.

  • Thank you Pookie01 & jefro, I take some reassurance in the fact there are others like me.

    I have spent the last two years searching for anything to help me cope with my RLS but haven’t found anything. I have tried many things from doing different diets, to vitamin supplements, homeopathic remedies, yoga and working with a chiropractor. I have tried all different medications from the pain killers to dopamine agonists.

    The simple things are the only things I have found that help such as daily exercise, eating healthily and taking a hot bath before bed. I use sock bandages on my lower legs when I go to bed, which helps me sleep a little bit better.

    I really hope there will be better treatments available in the future as my quality of life is a fraction of what it was before.

  • I know what you mean about quality of life as I was in a very bad place some time ago. When my RLS was really bad my whole body would twitch and jerk even my jaw would have a life of its own. Ropinirole was in fact my saviour but not as prescribed, as then I would take the full dose before bedtime and then feel awful due to the side effects. I found that by spreading the dose over the day I felt better and the RLS was only kicking in for short periods of time between doses. After seeing my GP he suggested Sinemet slow release may help which seemed to 'smooth' out the day but I also kept taking the Ropinirole as he didn't say it was instead of. The two work well for me together and I am only using 2mg of Ropinirole 1mg at 6ish and 1mg at 9ish and if I wake up with RLS on bad days I take another 1mg at breakfast instead of 4mg all at once at night. Of course RLS has a mind of its own and if it wants you to have a bad few days then it will but whereas I would suffer for days I now find popping another 1mg brings me back to pretty near normal again.

    Sorry by going on a bit but I am trying to say that every one is different and RLS affects us all differently so I would suggest experimenting with these drugs plus any others that people recommend until you find something that helps make your life pretty normal.

    I hope you can find a treatment that gives you your life back.

    Cheers... Jeff

  • I am a 60 year old female and have had RLS since I was a child. Of course back then no one knew what was going on. Over the years I have tried every medication offered in the USA. A medication will stop working after a while and I will have to try something else.

    I wanted to address a couple of your concerns. The first one that you are "fearful that this condition might lead onto something more serious like Parkinson’s or Multiple Sclerosis ". For me since I have had RLS about 50 years it hasn't developed into anything else... it is just more severe.

    Your other concern "sensory sensations on my skin all seem exaggerated ". I feel the same way. I also have very bad anxiety and fibromyalgia. So I don't know if that makes a difference. I normally wear the same style of tennis shoes, cotton socks, loose jeans and cotton t-shirts. Everything has to be loose and I cannot wear a belt. A different style of jeans or even a t-shirt with a collar will drive me crazy. I will fidget all day and my RLS is horrid. At night I wear cotton PJ's and socks. My legs go crazy if they touch the sheets or blanket so I have to tuck the bottom of my PJ's into my socks. My poor husband just laughs. LOL I am sorry if this is too much information.

    Everyone is different so you have to find out what works for you. Both of my parents had RLS and my mom had fibromyalgia. So for me this is genetic.

    I hope I eased your mind a little. Everyone is different. It helped me to keep a journal for a while of everything I did, wore and ate. I know if I get over tired, drink a soda, wear something with nylon in it, sit close to anyone or in a confined space, etc, my RLS will be awful, I will be a walking zombie all night long.

    Sorry I tend to ramble.

  • Making Jewellery is the thing for me that I can do and keeps me occupied and content. Even if I cannot sleep i get up and go to work. Pregavalin is not a drug I like since it makes me put on weight and I am increasing the dose. They say I can to 300x2 but I cannot see that happening. But it is helping along with parches and changing the antidepressant. Thanks to this forum advise!

  • I agree with all Grammy says.I've had it for40 odd years and there is no sign of it developing into anything else. Maybe cos of the way it works we may be more body sensitive than others . I personally feel my nerves and muscles are always tense from the constant sensation.my child says my facial is solid. She has been working on it recently. A full body deep tissue massage is needed.methinks!

  • Read chiro. Not child ha ha .

  • I have just the same and I have had three bad days with really bad pain all over , my daughter also suffers with it although not as bad as I do, she can take pain relief and it really helps her I hope she never has it as bad as this . I also have fibromyalgia and that is a lot of pain too . Nothing I have ever taken stops it . I hardly ever sleep the most is around 2-3 hours and that is around 6am then I'm up at 8.30. And I'm tired all the time. If anyone knows anything that can help please share because it's the pits . Don't worry about it being something like Parkinson's , this thing is its own little illness all on its own as far as I know . Sometimes when it's this bad I want to die I just don't know what to do with myself . Hope today is not too bad for you , have a good weekend x😇

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