Hi I am Caz, I have been suffering with RLS for over twenty years in fact the first I was aware of any symptoms was when I was pregnant with my eldest son who is now 24. After the pregnancy the symptoms did not go away like they do in some cases, and since then I have struggled with this condition every night making it almost impossible to get any restful sleep. No matter how long I have had the condition I will never get used to this stress, torment and feelings that I have each night when all I am begging for, is a few hours sleep like other 'normal people' have. I don't even mind if I only have a couple of hours, I do not expect to get as people say 'their full eight hours' - just enough to enable me to function the next day. To many this condition is not life threatening but it is certainly life changing and affects you and your family in nearly everything you want to do. For those people who are lucky enough not to have experienced the symptoms of RLS I don't think they would be able to truely understand what it is like to have a condition that deprives you of what should be a natural thing to do - sleep. I didn't talk to friends and people for years about it and how it affected me, only to other members of my family who suffer from it as well, as the condition can run in families. People just did not understand and said things like "I have to get my full eight hours sleep otherwise I can't function" - I felt like they thought I chose to keep myself awake night after night like a torture. I am sure so many of you on here go through the same and it would be good to hear from you - so many nights go by and I feel I am the only one on the world suffering and that everybody else are enjoying the luxury of sleep.Read less

12 Replies

  • Well you will certainly find many here that share your experience. It is such an affliction made worse by that fact that most people don't understand/take it seriously.

  • Yes sometimes you just need to hear or speak to someone who truely understands what you are going through. Kept meaning to sign up.


  • I am taking Ropinirole and have been for many years since before the medication was licensed for RLS, originally it was taken for Parkinsons Disease. I had to see a Neurologist before my GP would prescribe them. Since then it has become licensed for RLS. Interested to hear if anyone else is taking this drug and of their experience with it.

  • Hi Can, I am concerned that you are taking Ropinerole but still having dreadful nights so I am suspecting the med may be causing augmentation. What dose are you on and have you had to increase the dose?...Pipps x

  • Yes Caz I have taken those tabs and the trouble was 2 tabs soon didn't work then they put them up to 4 In the end I was on 8 a day then augmentation starts and everything. Is much worse I am now on Tramodol I know I have blips on them but they are the best I have had

  • Hi beady3, if you remember, you and I are on the same dose of TRAMADOL, and like you, I've had a couple of blips lately. I don't know what happened there but I'm back to normal. I got worried with augmentation but it normalized again. Back to the two 50 mg. at 5:30 pm and 11:30 pm. Did you try changing your times like we discussed a little while ago? If you did, how did it work, are you making it through the night? Take care.

  • Morning Johannasuar. Nice to hear you are back to the tabs working for you,yes I did try altering the times I took my tabs but it didn't work so am back to 5.00 and 9.00 and it's not going so bad ,the tabs still make me very tiered though do they make you like that,I still think Tramodol are the best med I have had for rls, I am on holls next week so hope all will go ok. Be good x

  • Hi, beady. I also get tired during the day but like I said before, if you can afford to do so, take a short nap, I do and it takes away the drowsiness. It doesn't have to be long, usually ten to 15 min does it for me, but like you, TRAMADOL is still the best for me too and I wouldn't trade the tiredness during the day for RLS at night. I guess we have to be penalized in one way or another for having this curse of illness. have a wonderful holiday, be safe, and I look forward to hearing from you again.

  • Caz we all know how you feel that is why we often write a message in the night hoping some one will reply because we are desperate ,no one understands only another sufferer ,if anyone thinks you have had a nights sleep they think it's all gone ,the worst saying is it will be better when the sun shines what does that mean Good luck to you

  • Caz, I have been taking Ropinerole for a number of years now & it has been the only thing that works for me. I take 2 tabs about an hour before I go to bed. I still don't get an uninterrupted night usually my legs start twitching at some stage but at least I do get 3/4 hours. Occassionally I find that I may need an extra tablet during the day particularly if its cold or if I am sat still for a long time but generally find that the Ropinerole works.

    I think it is very much a case of try everything & anything until you find something that helps whatever that is.

    I do have every sympathy for you just wish I could offer more help.

  • Caz33, you're not alone as you can see from this web site. Welcome to misery loves company, it's the ONLY place you kind find true compassion because we're all in the same boat. I've had RLS for five years caused by a drug reaction getting an MRI, like everyone else plus yourself, I didn't know what in the world was happening to me, the FEELING that we can't explain, the sleepless nights, the anguish in your body trying to jump out of its skin, etc....luckily early on due to another minor problem I was given TRAMADOL and low and behold, my body rested, rested like I had forgotten it could do. I've been on it for the five yrs., I take one 50 mg tab at 5:30 pm and Smithers y 11:30 pm, them I'm good for the night and all day. Lately though, I've had to take a third pill, just twice this has happened but I'm back to the same dose with just two per night, I can't explain the hiccup there but I did get worried about augmentation. Whenever you need someone to talk to, just come here, even some nights I've found someone else doing the night walking. I live in the US, so the time difference is a problem but there are others here for me from this country on this web. Good luck.

  • Caz33, sorry for some crazy typo in my message, I hope you understood what I meant.

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