It's even worse when it's impossible to get out of bed.

[patchworker]

I've had RLS for about 25 yrs. now. It was so bad I couldn't even sit in a comfy chair only just perch on the edge of a dining chair then off walking again. I used to walk miles through the town in the early hours. I had a very unhelpful GP who didn't believe I was getting no sleep, and my brain was too addled to explain to him that you can't sleep standing up. But I was lucky enough to find another GP in the same group who has been so kind over the years. She said she was " outside her comfort zone* and knew nothing about the problem, but would find out. And she did.

I've tried most dopermine agonists, some work better than others, but they do help me. At the moment I'm on Pramipexole 0.52mg prolonged release tablets. One in the morning and one at night, and I'm getting a wonderful 5 hours sleep most nights.

I do remember how horrific it was, how desperate I got, and how close I came to ending it all when the unhelpful GP told me that nothing could be done about it. I used to talk to my bedroom clock like an old friend. I was going crazy.

The only bad problem I've had with it recently was nearly three years ago when I spent two months in hospital having my esophagus removed because of cancer. I was fed through a tube into my jejunum, because obviously I couldn't swallow. and I couldn't take tablets. I had patches but they didn't help much, and I simply couldn't get out of bed, I was fastened to so many machines and drips. I was already on pain relief so that was OK, but oh the jumping, every 10 seconds, like chinese water torture. Maybe I slept the first two of every ten seconds, before being woken again by the growing tension. Is that possible? I tried putting my feet under the bars at the bottom of the bed but but my top half jumped instead.

Now I'm so grateful for every moments sleep I get.

[thedragon]

I feel for you. I dread having to be confined to bed for any reason. I understand what you mean about sleeping for seconds! Sometimes when I'm really exhausted I can fall asleep for a few mins ...I might miss part of a tv programme and when I wind back its only 4 or 5 mins I've missed! Strangely I sometimes feel quite refreshed!

[Hidden]

the jumping is shocking to me. I always thought that it was because

I slept too deeply for those 10 seconds or so that it took for the

awakening jerk that follows.

[nightdancer]

We can never sleep too deeply, and that does happen for seconds at at a time. That is my nightmare scenario, being strapped down. Cancer is horrid, am a survivor myself, but I never had to be strapped down, thank GOD. Glad the dopamine meds are helping. Pain meds are my salvation, and the only thing that works for me. RLS can be full body jerks, too, because we can get it all over.

[peterk]

Hello Patch worker. I can empathise and understand what you are saying. I had suspected testicular cancer had surgery but fortunately I didn't. Being confined to bed is pure torture. It gets me so annoyed because it is trivialised and it is a damn horrible illness that I am sure takes lives and is never recognised for doing so simply because people it doesn't in itself like cancer but because people cannot take the agony and distress any more. I don't have a supportive GP and am still searching. I did have and this is key. Being told it's in your head is another favourite one. Also Night dancer is right. I can get it all over except the arms. Who can stand that? I hate the involuntary jerks. However I might be strange but I used to walk miles thinking I could walk it off when I first got it through a medication given to me by mistake. However if I either over do it or under do it I am in big trouble. I have read this about the condition. The illness wrecks your social life and I find it very isolating. This site though is full of support. I am so pleased that the dopamine agonists work for you. Ropinerole did for me but only the sensory disturbance and lessened the jerks. Not the pain.The side affects were so serious in my case that I was hospitalised. Can't take any of them. It's not that long that three have been licensed. There is the rotigotine patch now. Nothing of course works completely. Often I call it" walking through the pain".

[mmm66]

I have told my family that i have this horror that when I am old, I am in a nursing home and I jump and walk so much, they tie me down. I go nuts as my legs are so bad and I can't get up or get anyone to understand. If one has this illness bad, It is horrifing and I don't think too many people realize it.

[Hidden in reply to mmm66]

I completely know how you feel. This is my worst nightmare! My mum suffered with RLS in her latter years and she eventually was immobile and unable to stand up and walk it off. I convinced her Doctor to give her Mirapexin, which did give her some relief. I have had several hospital stays where I was stuck in a bed and not able to get up or take my tablets. It was the worst experience ever. I have been on several different drugs and have had RLS since I was a teenager. Became chronic in my 40s, I am 62 now and have been taking Mirapexin for about 8 years now, which on the whole have been a lifesaver. The trouble is, I am now experiencing augmentation and have been referred to a private neurologist who is trying to help me. From my experience you really have to see a neurologist who specialises in RLS. Most GPs haven't a clue what we go through! Fortunately mine is sympathetic!

[Hidden]

You are one brave person. Thanks for telling your story. =)

[arjay]

Having read most of the blogs on this site it amazes me how many of us have thought about ended it all and still many GP's don't don't take us seriously. What have we got to do to get the medical profession to pay attention to us. Does anyone on here know an MP with a medical background. Got to be worth thinking about hasn't it.