RLS. Legs driving me crazy tonight

Have recently changed my medication for RLS from Pramipexole to Gabapentin as I felt that it was the Pramipexole that was not mixing well with my Methotrexate and making the nausea worse. However Gabapentin does not seem to be working for me at all and for the last few nights I have struggled to keep my legs under control and get some sleep. Tonight I have given in and am sitting here in my living room at 3am not having slept at all. Thought writing this might create a diversion for my brain and my legs and I think it might be working as they feel a little calmer. Will try to go back to bed and hope it will not start again as soon as I lie down. Methotrexate is annoyingly difficult to manage and I wish there was something more simple that would do the same job!!

10 Replies

  • Hello. How miserable for you, RLS have kept me awake many a night, it is so frustrating and exhausting! I am now taking Pregabalin (for my fibromyalgia) but, touch wood, so far it has knocked the RLS on the head which is an incredible relief! I'm only on NSAIDS for my RA so I don't know if you can take it with other things but speak to your GP and see if they can come up with something for you.

    Hope you get some relief soon, I nicknamed my legs Fred and Ginger because as soon as it was moonlight, they wanted to dance! ;-)

    All the best, JoJo x

  • Hi, I have this too, it's bloody terrible..infact I had it last night, I got up in the end and had a cup of tea...I've tried everything, from putting my legs I positions that surely are not really possible, deep heat rubbed it, hot water bottles and stretching the legs..I'm on MTX, hydroxy infliximub, they have put me on Amitriptyline which I was told would help...but it hasn't...I'm not sure how to work this one out...you have me sympathies as I know how horrendous it is...Mary.

  • Thank you Mary and JoJo for your sympathies. I understand exactly about putting your legs in the most ridiculous positions to try to get some relief. I finally managed to get back to sleep about 4.30am only to be woken up a little later with a start as my leg had gone into a cramp. One of those painful ones where the calf muscle goes into an extreme spasm so had to jump out if bed and hobble about until it passed. Slept then until 10.30am and am just having breakfast now. I wouldn't care but I have got a lovely day to myself today as husband has gone up to Sunderland to watch his football team and I was going to do so much with my day but it's nearly lunch time already and half the day is gone!!!

    I am going to bite the bullet tonight and go back to Pramipexole even though today is MTX day and I will just have to suffer the nausea tomorrow but I could not go through another night like last night.

    Thanks JoJo for suggesting Pregabalin . I have heard of it before but thought I would try Gabapebtin irst but will get back to my doctor ASAP and ask for it.

    Fingers crossed that we all have a good night's sleep tonight !!


  • Vitamin D3 got rid of my Restless Leg Syndrome and tailbone pain many others have said it has relieved theirs too. Have read that it is good for back pain too, but have no proof on that one.

    Must be a good maintenance dose strength, not just the multivitamins strength.

  • I don't think I have RLS but my legs periodically get "twitchy" when I'm resting, like involuntary jumps. They're not painful but I feel the need to stretch them, drives me daft. I have found though that since taking Adcal-D3 as a supplement with alendronic acid I don't seem to be having them any more. Coincidence? Not complaining though! :-)

  • If you forget to take your Adcal-D3 one day (or two) take note if it affects your legs or not, that might be a good pointer that it's your Adcal-D3 that is working for you. When I forget my D3 my RLS, tailbone and sciatica come back with a vengeance.

  • I'm not sure whether this will help or not, but sometimes RLS can be caused by low iron count. I used to get it a lot when I suffered from anaemia but since the menopause and increased levels of iron, I don't get it any more.

    Coastwalker, I'm on Adcal +D3 and it hasn't helped with my back pain at all. xx

  • What dose D3 are you on poemsgalore1 ? I have only 'read' that it is good for back pain, but I have no proof I'm afraid, maybe it helps only certain type back pains ?

  • Hello everyone. I use vitamin D with magnesium which has been recommended by my neurologist for RLS. When my legs are restless I Jake codeine and it always work. Good luck everyone!

  • Adcal-D3 1500 mg. I take one in the morning and one in the evening as prescribed. I did see that you'd only read it somewhere, just wanted to mention it doesn't help my back pain. :-) Mind you, I think it stems from my hips as it across the lower back.

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