I'm new . I've had RLS since teenage , it was mild then ,I could do knitting or something to take my mind of it.At around 60 it became more severe ,and I didn't realise you could get help for it. I stood night after night desperate to sit or lie down but couldn't. Any way I happened to mention it to the doctor and was given Pramipexole . I took it 3 times a day. Now I'm having side effects and want to get off if it . I've reduced it to 2,but still get RL on and off through the day. I'm rambling here but I m confused by it all at 67
I don't know how I will cope without taking it .Thanks for this site.
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lmbrrg
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I understand your confusion. This syndrome and it’s symptoms defy logic, don’t they?
I recommend reading up on as many of the posts here as you can, as doing this will give you an idea of just how non-sensical and hellish this syndrome is and tells you the many different ways to deal with the unbearable syndrome that is RLS.
Just remembered: Have you ever tried pineapple juice for the pain? I’m not sure if it’s a placebo effect or what, but it seems to help make my pain manageable (at times).
Hi Madlegs...have taken pramipexole for over 10 years...and am on maximum amount of 8 daily, now this drug on the whole works for me, i can generally get some sleep, I split the dose in two, take 4 at about 2pm and the remaining 4 at about 8pm and this generally works for me, but I have good days and bad days where I can be all over the place with it.
Just recently had a Total Knee replacement 3 months ago, so I'm just finishing off taking Tramadol, pregabalin Ibuprofen and paracetamol, non of which I find helps my RLS...so still need to take my pramipexole as usual, need to be careful not to have legs jumping too much with my knee recovering?..
Hope my experiences are of use to other sufferers?
Hi mysterylady, I hope you are recovering well from your operation. That is an exceptionally high dose of pramipexole (I think it is the highest I ever heard of for rls - I was on 1.5mg and I thought that was high). you should be alert for problems with impulse control such as compulsive internet shopping or gambling. These problems are very common in this drug at high doses. It is also quite likely that at that level it is 'feeding' your condition causing symptoms to be more severe and widespread when they present. This might explain why tramadol had no effect on your symptoms.
So sorry, ml. Just re-read your post and notice you taking 8 Tablets a day - not 8 mg as I for some reason thought. 8 tablets is still a fairly high dose (depending on the strength of the tablets) but not nearly as bad as I originally thought.
Ha ha...no worries...as for the bloody internet shopping...been there, done that (still doing that) got the tea shirt...and the flipping rubbish I sometimes buy 😂 but am keeping a lid on it, got really fed up yesterday as had a bad night with my knee and thought I'd nap in the morning
Noooo RLS had other ideas 🙄 I would just love to know why I got this cursed affliction and why there appears to be little or no research on RLS and not much help on the horizon with current budget cuts for the NHS.... well 63 this year, considering retiring from my carers part time job as have enjoyed being off for the last 3 months, so I can spend more time with my horse Mystery Lady (Missy)
So will see how we get on managing my RLS then ...
Imbrrg, I am 68 and I understand exactly what you are going through. We will all stick together and pray for each other and do our best to get over it.
What are your side effects to this drug I take amitriptelene 15 mg most night I get relief then I have really bad weeks as I am but it doesn’t suit every one
It sounds like you might benefit from coming off pramipexole although it can be a hard road as you will see if you look through some of the posts from the many people on here withdrawing from pramipexole or ropinerole (both are dopamine agonists and present similar difficult withdrawal symptoms).
In terms of what you do next, it partly depends on how serious you find your RLS symptoms (they will almost certainly go through a temporary worsening when you reduce/eliminate pramipexole but should settle down to pre-drug levels thereafter). There are non-pharmaceutical options which work for some people. I find doing a series of stretches and yoga poses for about 20 minutes when rls strikes quite effective (can be very hard to find the discipline to get up and do them admittedly). Many also find something very diverting such as computer games can be remarkably effective at actually banishing the jerkies. There are a number of passionate advocates for dietary changes on here - fodmap, anti-inflammatory, ketosis etc etc. For many people raising iron levels is very helpful. You need to get a serum ferritin check (make sure you get your actual figure - not just that you are 'normal'). Experts in the US recommend aiming to get the serum ferritin figure to over 100 for those suffering from RLS. For some the mere fact of raising iron levels can achieve a marked improvement in the condition but they are the lucky few.
In terms of medications, you could also look at anti-convulsants such as pregabalin (lyrica) or gabapentin. Or a low dose opiate such as tramadol. All the pharmaceutical options bring some problems with them. With RLS it is often a question of finding a balance between keeping on top of the symptoms and managing the side effects of the drugs that are effective against the condition. It is important to inform yourself very fully as the almost universal experience is that the medical profession is uninformed about the finer points of the condition and of the treatment options.
Tramadol is unsuitable for people over a certain age. Not sure what the cut off is, but when my mother, then 84, tried taking it, it made her be sick. My fault as I thought it would help her with the severe sciatica she was suffering from, and I didn't know that Tramadol was unsuitable for someone her age. Shouldn't have tried it, I know, but it was only one dose and she was in so much pain, and it had been the only thing that helped me when I was suffering from it, hence how I started on Tramadol in the first place! Obviously 67 is no way near that, and your GP wouldn't prescribe it for people who are at "that" age. Just thought I'd mention it, as obviously the older you get it will no longer be an option for RLS. Works for me though, leastways for a while longer
If your overt symptoms started in your teens, then it is 99% sure you have primary RLS, and you have had it all the time, since birth or before. A number of genes are implicated, and they get 'switched on' by some event or other, often a difficult birth or trauma in your mother's pregnancy perhaps.
Were you a wriggler in childhood? Was sleep ever a bit difficult for you?
The good news is that primary RLS responds brilliantly to IV iron infusions.
If you attend to that and improve, then you can address the horrid business of coming off your dopamine agonist.
You do not need a high dose of a DA to cause augmentation. I started augmenting almost immediately, on 0.125mg.
I have fought my way down to 0.25mg, but I have the occasional help of methadone, on those nights when I simply cannot cope.
I will come off when I find the courage.
You cannot cure it, there are quite a few chemical and structural glitches in the brain, but there are researchers hard at work to help us.
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