Restless legs

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Restless legs

Postby Fred » Sat Jun 25, 2016 9:37 pm

Since Christmas my partner has had horrendous restless legs. It started before he went onto capd in dec (he has fsgs) initially it improved, but since April time they have increasingly got worse. He changed onto apd last month and there have been a few teething problems but generally all is working well. His bloods etc are good.

The restless legs start mid afternoon and continue until the early hours of the morning. They are awful, he can't sit still he has to keep moving them and they even twitch is he gets to sleep. When he's at home we just ignore them ( although that's very difficult when we are trying to sleep) it is a particular problem when driving and when he sits in work meetings.

He has tried quinine sulphate, but this doesn't seem to have made any difference. His consultant has suggested sedatives, but this won't help when he's at work or driving. The hospital seem to be surprised he's still working!

This is now having a massive impact on both of us, as neither of us are sleeping. We have started a food and exercise diary as we hope we can pin it down to something specific. We thought it was too much exercise, he still manages the gym. Then we thought it was too little exercise....... We just can't work it out.

Has anyone else got experience of this? Any ideas of what might help.

Thank you

Also kidney disease is pants! Dialysis is pants!
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Re: Restless legs

Postby AmandaClare » Sun Jun 26, 2016 6:36 am

It's my personal experience that both too much and too little exercise can trigger restless legs! Alcohol and caffeine bring mine on too. But with something as severe as you're describing those lifesyle things are probably only a minor contributor.

You've probably already Googled, but this page lists possible causes - and so many of them could apply to a renal patient. ... auses.aspx

You could push for, say, better control of his anaemia or a change to his BP meds to see if that helps. Sounds like you might need to be quite assertive to get this taken seriously.

I really hope it improves.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: Restless legs

Postby Soobee » Sun Jun 26, 2016 2:38 pm

I know exactly what he is going through, I would never have believed that restless legs could make your life so miserable! I am also on APD (with FSGS!)

I was on quinine for ages and it did very little, I found out recently that quinine is for cramps so will not help restless legs (and as I don't suffer with cramps not sure why they prescribed it for me for nearly a year!)

However, 3 months ago I was prescribed Clonazepam - it worked! I have been able to sleep and feel so much better, it feels like a small miracle!!!
It is a muscle relaxant (used in epilepsy, and a little bit addictive I believe!) but I was at the end of my tether and would have tried anything.

It might not work for him but it might be worth a try, the relief I felt being able to get to sleep was immense.
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Re: Restless legs

Postby SKM23435 » Sun Jun 26, 2016 8:57 pm


If your nephrologist is no help it may be worth discussing with your GP. It's the sort of problem GP's deal with regularly. GP's just don't like prescribing for dialysis patients so may need to liaise.

I'm told low iron is a major cause of rstless legs - have your iron levels checked.
Drugs like clonazepam (as Soobee says) help, so does gabapentin and an anti Parkinson's drug beginning with R that I can't remember.

There must be something that can be done to help.
As you say renal failure is the pits.
Hope you get it sorted.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Re: Restless legs

Postby Fred » Tue Jun 28, 2016 5:20 am

Thanks for those replies.
We will see if the GP can sort something. The clonazepam I am concerned will cause some sleepiness which will impact on his driving, but we will have to speak to the GP and see.

Fingers crossed we can get something sorted.
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Re: Restless legs

Postby meccanoman » Tue Jun 28, 2016 11:01 pm

Hello Fred,
Me the same, especially when I sit down in the evening to watch telly etc, my legs ache like mad and I constantly have to move them. Now got fallen arches in both feet which is very painful .
I find that sitting on the floor with my legs stretched out in front of me helps, plus I use the micro wave 'Hot bags' when trying to sleep. I can only sleep sat up on the settee and take a dose of Oxycodone very strong liquid pain killer.
Good luck and hope you are ok.
Kindest regards Jim.
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Re: Restless legs

Postby MandyV » Fri Jul 01, 2016 12:15 pm

Hi - there are a number of discussions on the board about this topic as it is both rather nasty and more common than you might think. I found that a Parkinsons drug (pramexepole) helped me and I have had virtually no issues post transplant. Pre the medication I used to lie in bed with my legs up against the wall as that seemed to help, bizarre as it sounds ...
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Location: Fulham

Re: Restless legs

Postby chrisb » Sun Aug 07, 2016 2:35 pm

Gabapentin. Wonder drug
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