New here, but not to RLS

I am 60 years old and have had rls for as long as I can remember. It is getting worse I do not want to go back to not watching a whole film or going to the theartre because I wriggle about too much and get embarraced. Also standing by the door on areoplanes for 5 hours was definately an all time low.

I am on the maximum dose of Ropinerole and have been taking it for a number of years suffering the gambling and impulsivity too.

I am going to see my doctor this week for a blood test for ferratin and then maybe move onto patch. The only time I slept better was when I was taking pre gablin for a trapped nerve in my shoulder. I came off it and wow they seemed horrendous thats 2 years ago. I have been told that gabapentin is more widely used for rls and will go on it if I cannot get any relief any other way.

Any views on anything I have mentioned would be great.

12 Replies

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  • There's a lot of good things that I miss (like the theater, performing arts)

    because my legs can't behave..

    I get medicine for flying every time I ask for it. (I don't travel but 3 times

    a year)

    I liked the Gabapentin..but I gained weight fast on it in just weeks...

    It's been hectic trying to get in a workout to rid myself of those few

    extra pounds.

  • This is the first I have ever heard about Gabapentin causing a weight gain. I've been taking it with clonazepam and I'm also trying to lose weight. To be fair this weight has been around longer than the gabapentin by many many years but it maybe why I'm finding it so hard to lose it. Damn.

    Also HELP

  • Hi glendam 52, I take pramipoxal which works really well for me but needs 2 to 3 hrs to work. I thankfully suffer little side affects except tiredness. Might be worth talking to your Gp about it.

  • Oh i know exactly how you feel. I am on pramipexole and take 4 at tea time hoping that i can get a rest and be able to sit and relax and even watch a bit of tv ,i have never had Gabapentin

    but dont want to put on anymore weight but wonder if it would be worth a try as the pramipexole does not seem to be working as well as it had been . Have just returned from a week in the sun and found the heat made my legs 10 times worse, couldnt sleep or lie in sun total nightmare but it is great to hear what helps other people and i will giving my GP a wee visit.

  • my rls is sometimes more worse at bedtime when i lie down to go too sleep the medication i was prescribed by my doctor was diazapam but a few times it has started again so i have an appointment too see my doctor aswell i also have a vitamin d defiancy hope you the answers from your doctor

  • Hi there,

    I've been suffering since my 20's (I'm now 49) but it is only in the last few years that it has been causing me real problems. I'm experimenting with not eating or drinking alcohol after 5pm, and trying a gluten free diet. Unfortunately as I have to have a high fibre diet that could cause me difficulties but I'm willing to try anything. I've not drunk coffee after 4pm for years as that definitely doesn't help.

    I thought magnesium was helping but I'm not so sure. I had some really great nights sleep after our holiday in August and am wondering if it was because my vitamin D level was increased?

    Here's hoping someone can find a remedy.

  • Thanks everyone, I don’t drink caffeine in the evening either and had to wean myself off chocolate as that was horrendous. It was one of my great loves too but as you say we are willing to try anything. I don’t drink very much anyway so that’s not a problem for me. I am however desperately trying to lose weight and need to lose 3 stone. So the idea gabapentin may increase my weight does cause concern.

    I have an appointment for next Friday but that will be just to arrange blood tests I will then have to go back with results to sort any further medication. So I have at least 2-3 weeks to wait to try anything new seems along time when you are getting desperate.

  • Gapapentin can work well for some people for RLS, some it doesnt help. as usual its what works for one deosnt for another. What i do know, that for everyone i know who is taking Gapapentin or has tried it they all seem to say the same, they put weight on...i was one of those who put weight on when i tried it, it didnt help my RLS, it made me really sleepy in the day, so after a month i came off it....took ages to get to weight back off, but i did...

    Good luck with you what ever you end up taking... :)

  • Thanks Elisse I will definately bare that in mind.

  • have to have a second blood test for ferritin levels. still taking ropinirole. terrible night last night trying to sort out if i am eating anything that makes my jumpy legs worse,

    cumoneileen

  • I would look at chocolate as that is wicked for mine or chinese takeaway too.

  • My ferratin levels were fine as were all my other tests the dr did so I am starting 100 mg gabapentin this evening with the idea of dropping the ropinerole some.

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