RLS sleeplessness

RLS sleeplessness

I have suffered from RLS for many years but is now very severe.I have been taking pramipexole with some success but the neurologist has now prescribed Gabapentin. I am climbing the walls but wonder whether I need to give it more time.I have very little sleep and cannot function very well during the day. Can someone give me some advice before I go mad please. It is now 2.45.a.m. and I have to keep walking around to get some respite but am exhausted.

40 Replies

  • I have found that alternating medication helps. I take pramipexole and have patches - approximately two days of one then two days of the other. If my legs are still bad I take a herbal pill called quiet legs (these are expensive, but do help a little) or I take co - Co codamol. I also run my legs with lavender oil. None of the above cure, bu the do help.

  • Thank you .I will try what you suggest.

  • Magnesium oil spray is very good I bought some from Amazon and it helps me

  • Thanks. I'll try it.

  • Hi Marita, I have been prescribed both those drugs and the build up of side affects were worse than RLS after a few weeks I was losing my memory, blurred vision and going quite mad, seriously it affected my central nervous system so badly I didn't know what I was doing but realised it was a side effect so went to my doctor who made me, over a few weeks reduce slowly and come off.I am not taking anything for RLS now as have tried everything.. I am having a tough time and morning leg cramps are dreadful..

    I do feel normal in my head and thinking now but cannot get away from all RLS system causes me at night and now some of the day....

  • Thank you but I don't think I can cope without anything. I'll just have to keep looking for something that works.

  • Sounds like you might be suffering from withdrawal from the pramipexol. Changing to Gabapentin is good procedure, butyou should have been taken down off the prami slowly and given some opiates to get you through those rough few days.

    At present , if you can't get opiates , then , if you don't have liver problems, you could consider Paracetamol/ Acetaminophen to get you over the worst.

    But you really need opioud urgently.

  • Thank you . The G.P. did initially stop the pramipexol totally and Started me on gabapentin. I felt very ill and another G.P. told me that the Pramipexol should have been reduced slowly, which has now been done But I am still suffering to a great degree at night. I am up for most of the night as I cannot stay in bed and find it difficult to function during the day. Do you think I should allow the Gabapentin more time to work?

  • Yes- Gabapentin takes a few weeks to build up. And needs to be gradually raised over three weeks.

    Avoid taking magnesium at same time as the Gabapentin -3hrs apart.


  • I couldn't tolerate gabapentin and was told to stop immediately

  • Thank you, what is opioud??

  • Fat fingers me . Opioid. Like as in Tramadol or oxycodone.

  • You have my sympathy (empathy). I have the same thing, and it appears to be getting worse. I know BOTH of my parents used to have it and I fear I have a "double dose" because of that. ROPINEROLE ( 1 Mg tab ) has worked for me. Try two tabs at bedtime, but check with your doc for sure on the dosage, OK ? I do NOT know what I would do without it at night. I also have RLS during the day if I sit still for too long.

    Do you have it during the day, also ?

    I didn't get RLS until I was in my 60's.

    Having it during the day is relatively new to me ,,, UGH !

    Hope you will answer my question about whether you have it during the day.


    ( ~ : ()> ) ~ ;

  • I took cabergoline for 6 years that was brilliant when this stopped I went on to pramipexole which was also good tho at times I hit a crisis point which usually passes .I have tried rotigotine patches but didn't help.there seems to be no pattern to rls.I was taking a small dose of pram at 5pm then a small and bigger dose at 8pm. I thought maybe augmentation was starting so have cut 5pm dose down and seem much better. .for now !

  • Annie, if you think your symptoms are becoming worse then that usually points to augmentation, where the dopamine med is starting to make your RLS symptoms start during the day and maybe it affecting other parts of your body, arms and torso. Put Augmentation in the search box at the top right hand side of this page there are many many posts on this subject.

  • Agree -didn't see this answer when I replied.

  • I started with RLS during my 20s but now that I am 60 it is much worse. I have suffered badly during the day as well as the night if I have to sit for a length of time. If I'm in the car for a while I have to stop to get out and walk around. The Gabapentin has helped the problem slightly during the day but it is much worse during the evening and night'.

  • If you have had to increase your dose of Ropinarol , then you are likely suffering from augmentation. You may need to change your medication .

  • I have had RLS since I was a child, although of course it wasn't recognised then. Its a family thing with me too. I am 67 now and have started having symptoms in the day time too. I have ME too and am totally exhausted. I sleep when I can and accept that my life is rather chaotic.

  • I feel your pain . Before I had pramipexole l had about 6 years on cabergoline which worked from day 1 . Maybe give that a try if they still prescribe it .Accepting it won't go away is so hard .

  • Have you tried eating a corned beef sandwich when you wake up in the night? The iron can help

  • I'll ask about Cabergoline. Thanks.

  • Morning , I too suffered this most distressing syndrome . Gabapentin is given out like sweeties for just about every ailment and certainly useless for RLS. I eventually started spraying my legs with "Goodnight Magnesium Spray " purple box from Holland and Barrat . It worked for a while but had a few restless nights . I also have peripheral neuropathy in my feet due to chemotherapy and tried everything to no avail but I sent for a circulation machine called revitive hoping it would help my feet . No good for feet BUT no rls for over a month , don't even think about it when going to bed . It's cured me thankfully. If you go on to Revitive.com you can read about it and can have a months trial. Worth every penny . If you decide to order it do it from their website as you get lots of extras with it. Worth a try .

    Shona 👍🏻

  • I will make enquiries about this. Thanks.

  • I am the same as you I am going mad with RLS I have been on rapinirole it helped for a long time but not now I hope I can go and see someone like you all the best Tony

  • If you just stopped the Pramipexole then you will be feeling withdrawals, no one should just stop taking a dopamine med or any med just like that. Gabapentin does need time to build up in your system, but it wont take care of the withdrawals. You do need a strong pain med like Tramadol to take while withdrawing.

  • I see you have started eating more corned beef. How has this been working for you?

  • Who is eating more corned beef..? Never heard of that food helping with RLS. :)

  • Hi Marita, I feel very sorry for you as I had the same symptons. I was walking around the house and could not keep still. This is a horrid illness that no body truly understands until you suffer from it. I have worked out my own formula and up to know it is working. I take one 2mg tablet of Roprinirole (prescribed by my GP for RLS) around 8.00pm. I then take one sleeping tablet which I ) buy these from Boots the chemist). At the same time I take two Tramadol tablets and two paracetamol tablets, ( prescribed by my GP: I suffer from severe osteoarthritis. Since I have been taking this formula of medication which, I have worked out for myself, I am finding up to now that it is working for me. This formula may not work for you Marita, but I have been doing this for over two years, and I have not come to any harm. I still suffer with RLS throughout the day, but I keep myself occupied and this takes my mind off the RLS. As long as I can sleep through the night, I can cope with the daytime. I hope this helps you Marita as I have been there and it can drag you down. I checked with my chemist before I started taking the tablets: he said that taking Roprinirole,Tramadol and Paracetamol altogether: is okay. The only one I did not tell him about was that I was taking a sleeping tablet as well, but it has not done me any harm. My heart goes out you Marita, I hope this has been of some help to you. Also as a tip ask that your GP check that your calcium levels are okay.

  • If you just take long acting Tramadol , there should be no need for the rest of that stuff , except maybe the sleeping pill.

  • What do you mean about long acting Tramadol? I have not heard of that.

  • Tramadol ER.

  • My doctor is only allowed to prescribe Tramadol for a week at a time.

  • You are buying sleeping tablets from Boots??

  • Yes Boots the chemist in the UK Sleepeaze 50mg tablets one a night for temporary sleep problems

  • I will discuss your suggestions with my G.P. Thank you.

  • Sorry to hear RLS is getting worse. i have had it also, but i am getting some relief by taking Ropinrole. I also get RLS in arms, was up couple nights ago for 3 hours. Maybe it should be called RAS. I am taking Gabapentan for Sciatic nerve pain in left leg but about ready to quit it. I do not see any relief from this Med. My doctor has me on Percocet for Sciatica, 2 pills a day, and it gets me by. Just had a flair up of sciatica in right leg after riding airplane to Seattle a month ago. On top of this i had an attack with Kidney Stone in left side. fortunately they were able to blast it into smaller pieces and it passed, no pain now. So hang in, things are going to get better.

  • Thank you. I hope so.

  • You have my heartfelt sympathy. I have had RLS since i was about 8 years old, i am now 76. It affects legs arms trunk shoulders hands and fingers. I am now on Rotigotine transdermal 24 hour patches and started on 2mg but am now on 6mg, and I still have days and nights with RLS and appear to be shadow and kick boxing both with the jderky movements. I have been on gabapentin , mirapexin and ropinerole in the past.

    There is a web site which has proved helpful and which is doing lots to raise the understanding of RLS, as often it is minimised and/or misunderstood entirely. I am unable to even sit down when it starts these days, the patches afford some relief, you are right tho, RLS affects every day, and night life.at its worst. socially and personally. Things that set off a spell of RLS, are wearing socks/stockings, fluffy slippers,gloves, jeans, warm surroundings, thats just for starters. I have to say the patches help, but I still get periods when it breaks thru, but at least i do get some relief.I hope this proves helpful to you. The patches have only been licenced about 2 years. The starting dose is 2mg, its worth a try.

  • Come off these terrible drugs before you go completely mad.. I went through all drugs mentioned on all this forum and was a complete wreck mentally.. I was doing strange things, my memory went and I had blurred vision not to mention always being tired. A trip to physio yesterday for an assessment for Acupunture ended up in the physiotherapist giving me special stretching exercises to do and last night had a great nights sleep! I take paracetamol when needed that's all! I have a bar of Dial soap under bottom sheet also wear fairly tight wide elastic garters I made round my feet..

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