R.L.S Rules my life

Posted , 6 users are following.

I have suffered with restless legs for about 20yrs, i have the sypmtoms 24/7 and every thing i do in life i have to work round my legs.  About 8yrs ago i went to my doctors in tears and pleaded for her to listen  and thankfully i found a doctor that did, she prescribed me a drug called Ropinirole and although i am on the maximum dose this drug is fantastic it really works, i have tried Gabapentin and other drugs that have done nothing but Ropinirole for me has been the best and i now can sleep at night.  I still have the problem through the day and i am in the process of trying to convince my doctor to let me take an extra Ropinirole for this and if i can achieve this then all will be well,  after so many years of sleepless nights and depression things are finally starting to look up.

R.L.S, is a horrible condition and i feel for anyone who suffers and although this is just a short write up of my condition if i can be of any help to sufferers please inbox me and i will help as much as i can,

Thanks for reading Ally x

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7 Replies

  • Posted

    I was on the maximum dose of ropinirole, at one point like you, but then had problems during the day, unbeknown to my Doctor I took an extra one daily, this solved the problem, but needed more tablets than my monthly supply. I was requesting more and got them until my Doctor called me in and queried this, he immediately took me off Ropinorole, he told me I would suffer withdrawal systems going over the maximum dose and they were dreadful. I was then put on pramipexole they worked for a time, am now on 3mgm Rotigotine patches and take bio magnesium this does help, but for how long!!!

     

    I wouldn't wish this condition on my worst enemy. Please keep me informed re taking an exta tablet would be interested to know the outcome.

    Wishing you well Joan

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    • Posted

      Hi joan did your doctor tell you what the withdrawl symptoms were and why is it not possible to take one extra ropinirole a day because like you i am currently taking one extra and therefore need my tablets early all the time and i just make up silly excuses its a living hell !!!

      Thanks Ally x

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  • Posted

    I have had this disease since 2010 which started after having knee replacement. It is a terrible disease and has caused me many hours of helpless misery. I take ropinirole 1 mg twice a day at the present time. I also take 600 mg of gabapentin and .5 of clonazepam each night. I would caution you to be aware that too much ropinerole can augment your symptoms. At one point I took ropinirole ERwhich is an extended release medication but it increased my symptoms and my Doctor put me back to the minimum dosage. I have found that I must take the medication exactly on time or I regret it later so my phone and computer has alarms set for this. I do not sleep more than 4 hours which I think is when the medication wears off but I am currently working with a doctor to help with this. I have also tried acupunture and reiki but I can't say that they have helped. The acupunture certainly helps with other things. I have just started the reiki so it is too soon to know if it will help. I wish you luck on your journey with this disease for it is a terrible disease to live with.
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  • Posted

    Told had too much ropinirole in my system so before I could try another drug had to go cold turkey for 4 days, this was horrendous, my whole body was shaking, feeling sick, rolling round the room in agony, screaming, hyperventiliting, my Husband wanted me to go to hospital, I refused, after 3 days saw my Doctor who  put me on pramipexole. These worked for a time and now on patches. I would never go over the recommended dosage again. It is a living hell!!!!

    Take care Joan

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  • Posted

    I have suffered with rls since 2001at first it was manageable on requip for 3 years then pramapaxole with dosage increases till I had back surgery in January 2014 then the legs became a nightmare. Went to neurologist who then increased the pramapaxole to the highest recommeded dose for people with Parkinson's when that didn't help he added cymbalta and gabapenten and the legs would not stop and the daytime was now a constant problem. Was put on a CPAP in hopes that it would help I was lucky if I could get 20 minutes of sleep at a time with maybe a total of 2 hours sleep altogether. It got so bad I would fall asleep standing up. Finally got fed up and requested a neurologist that was a sleep specialist he immediately took me off pramapaxole and cymbalta said cymbalta can actually make rls worse and that pramapaxole was augmenting the next couple weeks were pure hell. He put me on a BiPAP increased gabapenten added lorazepam at night and has me taking iron I'm iron deficient, the rls has improved not as bad during the day and I am getting about 4 hours asleep.progress still working on making it better Dr said no quick fixes wants to work towards long term management till better medicine comes available. Dr said sometime to much of something can actually make things worse I definitely agree with that
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  • Posted

    i am so happy y ou have something to take that  at least gets you thru the night,. I have had it for like eight yrs and have had enough, i only got it  early evenings and through out the night, no matter how tired i was, but it was affecting not just me, my husband couldnt sleep either. I would wear wholes in the sheets where i would move my legs all the time and long story short, i found liquid iron called ferodan surup, totally cured my restless legs and arms, totally got rid of it  and from day one, I hope this helps people, please, it is worth a try
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