Diagnosed about ten years ago but seems longer than that. Doctor put me on ROPINOROLE stating it was still experimental as not much was known about RLS. Told me to check online if I didn't believe him. At the time the only feeds were to America, so glad to see it is now recognised seriously over here.

Symptom 1 ...twitchy jumpy legs...playing football or auditioning for Riverdance ...ANNOYING

Symptom 2 ...itchy bones ...feel like the bones are itching right in the centre where you can't scratch ...IRRITATING

Symptom 3 feet ...feel like you could fry an egg on them they are that hot ...DEPRESSING

Symptom 4 ...leg and feet cramp ...starts when I try to stretch legs to feel more comfortable ...PAINFUL

Spent many nights walking on cold floors, doing a funny stomping type walk ( much to the amazement of my dog...thinks I'm mad). As I said I am on ROPINOROLE, swapped and changed and finally found 3mg seems to work most nights.

Like a post I read last week, at times you do feel like cutting your legs off, that's how depressing it is, people without this should look into it, then we may get some sympathy instead of being screamed at for jumping about in a bed.


34 Replies

  • I've was diagnosed with Rls roughly aroun 10 years ago. I take a drug called imipramine. I can honestly say it's slowed down the attacks of Rls but wen they occur I end up having a horrific night. Usually keeping my husband awake. I'm exhausted at the moment coz I've not slept for 1 night and it's back again tonight. Last night it was in my arms which I hate with a passion. I really wish I could chop them of. One thing that I've discovered is going on my crazy fit vibration plate helps with Rls in the legs. I go on it for 10 mins with the speed set high on 40. 9/10 times it gives total relief. Hope this helps. Good luck with getting some sleep x

  • Thanks I'll try that...nothing ventured gained

  • Good luck I hope it helps for you. X

  • Imipramine is not recommended for RLS as it is a tricyclic antidepressant which will make symptoms much worse for the vast majority of us. ..Pipps

  • What is a fit vibration plate? I need something, so far nothing works.

  • What is a crazy fit vibration plate?

  • It's one of those big things that stand in the corner, all the rage a few years ago for burning off excess fat and toning the body.Wife says it works but have never tried it myself.

  • Hi carcol92. what is a vibration plate could you explain please any things worth a try

  • Hi a vibration plate is a machine you stand on the plate vibrates. You control the speed. I've found that setting mine on 40 (fast) for 10 mins the vibrations ease the RLS and aid me to have a good nites sleep. It was my husbands idea to try it as he thought RLS had something to do with circulation. Have a look on Google or YouTube. I know a lot of gyms have these machines. Mines a crazy fit. Hope this helps .

  • Ah ,,I know hired one years ago to try to tone up didn't work though , so it works for your legs ? There's something out now you put your feet on and that vibrates has anyone tried one of those been out a few years but don't want to waste money if they don't work

  • Is that the Relaxing? ? I was reading about it earlier.

  • Relaxis sorry. Predicted txt

  • they advertise it on tele here it is round and has a place where you put your feet about the size of one of those robot vacs

  • Yes I think I know what you mean. I bought one for my mum to help with her circulation, but I've never tried it. My mum suffers from Rls also and I have told her to try it when she struggles. But as yet I don't think she has. I Will ask her and let you know if it worked for her.

  • Yes please ,you should try it as well

  • Hi mopsy

    My mum tried that little machine I bought her. It has all different settings. she set it on circulation and got some relief. One leg gave her a bit of pain during the nite but nothing to bad. I told her to keep using it and keep me informed. Will keep you updated.

  • That would be good. Cheers

  • Mrappleton hi there are a lot of us THAT do feel for you it's not fair,,, there's no way you can explain what it's like ,and no one does understand unless you have it yourself just wish there was more help available in the meantime will send you hugs like everyone was sending to me when I'm on a downer ,just remember there are people out there that can at least give you comfort

  • I agree with Mopsy, I've had it my whole life and still can't find the word to describe the pain, discomfort and the overwhelming feeling of despair!

    I have tried to explain it to hundreds of people and the closest I got to understanding was:

    "Aye my legs go a bit like that sometimes when I'm on along journey".

    F**K me; my legs, back and arms are like that most days and to a degree of intensity people could not comprehend, the pain when it is bad has me rolling on floor and take into consideration I'm on very strong pain drugs - when I didn't have them I prayed for death - literally!

    I've given up trying to explain as I only get annoyed when some prick then turns and says 'put soap in your bed' - a Dr quizzed me as to why I refused to do that, I told him when he produces the evidence I'll do it, (this is the same fella that told me cannabis had no medicinal properties!!).

    So if the medical profession cannot see the damage the sleep deprivation, inability to rest and pain is really doing lay people aren't going to.

    Stick with people who know and care - you'll be grand here :)

    Take care.

  • Thanks to all of you fellow sufferers out there,as you say trying to explain it... probably have more luck teaching my dog to speak Russian.

  • что было бы легче!!!! :)

  • Just showing to dog to see what you said... GREAT

  • Raffs you show off Russian! Lol

  • Is that Russian repeatable to tell us what it means in English...! ? :P

  • It means:

    it would be easier

    in reference to teaching a dog Russian than getting people to understand you.

  • My dog says yes that's right....

  • Right on raffs

  • Ahh, 'a good night's sleep' - those were the days...a distant memory now, but we can always hope :)

  • I had very severe Primary RLS and with my med combination i have a good nights sleep 95% of the time so there isl hope.Without meds i would have raging RLS every afternoon/evening/night.

  • What are you on and dosages please.

  • Deblocklear I use 1mg Neupro patch (a dopamine agonists ), 150 mg Pregablin ( Lyrica ) and a tiny dose of slow release Morphine for spinal problems. .Pippins2 x

  • Mrappleton,

    You are certainly not alone in the world, but it feels that way when you are up at 2 am and have the sensation you cannot describe to anyone except fellow sufferers.

    I started off in 2002 with maripex which worked well until I lost a great deal of money because of excessive gambling. I was then switched to ropiniprole and now am in excess of the maximum dosage just to be close to normal.

    It gets worse and you have to find a doctor who knows how to do it to help you quiet down.

  • Regarding using vibration to help with RLS symptoms I bought a TENS machine about a year ago and have found it very useful. You stick on the pads and turn the current up and it makes your muscles pulse as if you are exercising. It means I can lie in bed while my legs exercise themselves. I put it on a 30 min timer and, if I am lucky, I have fallen asleep by the time the 30 min is up. I should add that I also use Ropinrole and my big breakthrough in the last year has been accessing the 24 hr slow release version (Requip Modutab) but, on occasions when I forget to take it, the TENS machine is my safety net.

  • Hi Mrappleton, i was just reading your post as i am interested in people using Ropinorole. l was told about this drug by a friend who knows a gentleman who has used it for RLS and now for Parkinson's disease. l am on Clonazepam which was ok for years but lately it seems to have lost it's way for me. l was thinking about seeing my GP to ask to try Ropinorole to see if it would help a bit.

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