I have CA & suffer badly from restless legs gett... - Ataxia UK

Ataxia UK

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I have CA & suffer badly from restless legs getting cramps & twitches in my calves - does anyone else suffer &/or know of any treatments??

glosman profile image
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glosman profile image
glosman
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14 Replies
HarryB profile image
HarryBAdministrator

Hi glosman

Although I sometimes get cramp in my calves, fortunately this is infrequent. Restless legs and cramps are common problems in people with Ataxia and there are various treatments available. There are prescribed medications available and I know one lady has spoken about taking organic turmeric successfully as she had side effects to other medication. Have you spoken to your neurologist about these symptoms?

Harriet

glosman profile image
glosman in reply to HarryB

Thanks, I have spoken to my Neorlogist who basically said its part of ataxia & only thing to help is tranquilisers from my GP. My GP has been pretty helpful but I have tried lots of tablets with little success now on ropinerole which sometimes helps + quinine.

Tumeric hasn't been mentioned before so willgive this a go.

loopylainy profile image
loopylainy

Hiya glosman

I too have had restless legs for years and recently my GP put me on Requip you have to start taking it in 1mg, then 2mg, then 5mg at first. I have to say it has been brilliant! I also suffer from insomnia, but the restless legs on top was like torture! ask your GP if you can give these tablets a go

loopylainy xx

glosman profile image
glosman in reply to loopylainy

Thanks, I have tried lots of tablets with little success now on ropinerole which sometimes helps + quinine.

Requip hasn't been mentioned before so will talk to my GP about this when I next go with a view to trying that.

loopylainy profile image
loopylainy in reply to glosman

Hiya!

Just had look at the information leaflet for Requip, seems this is another name for Ropinorole, so you are already taking it. I hope you get somthing that suits you soon. Keep trying xx

AliceS profile image
AliceS

Hi Glosman,

I have a CA and suffer terribly from cramps in my feet and calves. Very painful. Also sometimes I can't stop jiggling my legs up and down in the evening (which really annoys my husband!!) and I've found that a good magnesium supplement helps no end. I get insomnia too and the magnesium helps no end with that too.

I hope you find something that helps,

Alice

glosman profile image
glosman in reply to AliceS

Hi Alice, I too get jiggles in the evening which does irritate my partner + is really annoying for me. When that happens I have to get up & walk arpounbd + warming my legs also works only problem that isnt always practical in a cinema, thgeatre or on a plane!!

I have tried magnesium but didnt find it made much difference - probably because I didnt stick with it for long enough - still got the tablets so will have to give that another go.

To help stop evening jiggles etc try quinine tabvlets 1 per day + sounds daft but waring long socks or leggings to keep calves warm seems to help.

Brian

Litty profile image
Litty

Hello there glosman

I am the lady (thanks Harry, I sound really posh!) who takes turmeric.

I take one organic 400mg turmeric and one Opti 3 every morning and both again at night.

I THINK it is turmeric that helps, but the Opti 3 which is an EPA and DHA supplement, are good for people with my SCA1, might be useful too?

bodykind.com/product/3063_1...

opti3omega.com/

If you take anything else please be careful. This site is very good for discussing potential drug interactions and problems.

mskcc.org/cancer-care/integ...

I hope these help.

All the best

Litty

Litty profile image
Litty in reply to Litty

Oh I forgot to say ...

If I am in trouble I take an extra turmeric at lunchtime.

Limana68 profile image
Limana68

My hubby takes Gabapentin(?) for this, and he was also told by his occ therapist to try a glass of tonic water before bed to ease the cramps, and he says it works!

glosman profile image
glosman

Hi Limana68,

Thanks for your advice I have tried Gabapentin but had a bad reaction to it so had to stop but I do take quinine tablets which helps which is a main ingredient of tonic water.

modern1 profile image
modern1

hi, if they do please let me know and sleeping for me is a nightmare

Legs do ache, left is the worst and drags. Painkillers are of no help Dr put it down to ATAXIA and that was that.

Wakes me up during sleep quite often.

silkwood profile image
silkwood

Have CA too. Also get Restless legs usually in the evenings and always during Question Time and This Week prob as both are late.

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