Just wondering....: but does anyone get... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Just wondering....

Hannah_x profile image
8 Replies

but does anyone get on some days where you've been walking or sitting down and then your toes and feet start shaking uncontrolably and you can't stop them shaking? ( although i think its just me)

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Hannah_x profile image
Hannah_x
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8 Replies
Emma2 profile image
Emma2

I don't get this exactly but sometimes when I get in late at night I will get a real sudden chill and shake from the cold - I get goosebumps and chattering teeth. Last time it happened my partner chucked a blanket on me to warm me up and once I felt warm I was fine. I think it tends to happen when it is quite cold and I think the body just has minor hissy fit!!

zenabb profile image
zenabb

No, but I get cramps particularly in my toes.

Yorky profile image
Yorky in reply tozenabb

Hello, I get a lot of cramps at night - toes,ankles calves, knees - in places in my legs where I didn't know that I had muscles. Drinking tonic water in the evening helps reduce them (make sure that ii is one which contains quinne), as well keeping the legs and feet warm - I often sleep in my thermal leggings and cashmire socks - very fetching!

Jeanette_Ish profile image
Jeanette_Ish

this happens to me too, I have constant numbness with pins and needles some days are worse than others, if i walk far i end up with them shaking just like you, some days it never stops even when resting can go on all night, its like walking a vibrating pavement and i hate and avoid those traffic crossing with the bobbles on ment for the blind that hurts walking over them, like electic shocks running threw my body. if my skin is bad i don't bother walking any where.

Carol-C profile image
Carol-C

Hi - I don't get this exactly but what I do get quite often is a restless foot, usually my left one, and I just cannot keep it still; it's an awful feeling and sometimes lasts for hours; if it starts when I am in bed, I have no chance of going to sleep.Anyone else have this problem?

Yorky profile image
Yorky in reply toCarol-C

Hello, I always get restless legs when having my monthly Iloporost infusion, it ususally starts about half way through the 6 hour treatment and disappears soon after the infusion stops. Yes it is an awful feeling.

uknlv profile image
uknlv in reply toCarol-C

I get restless legs all the time, and usually when I am trying to go to sleep. It is terribly annoying and makes it impossible to sleep. Between that and my acid reflux and every two hour trip to the bathroom, sleep is becoming optional!

Bernie profile image
Bernie

Hi, I have restless legs i get a terrible crawling like feeling inside the legs mainly at night. I have only just recently started with this problem after I had a heart bye pass.

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