3 replies to this topic

[Lucydog]

Well Ive had trouble with one of my feet for ages, so on my last trip to the Dr, she looked at it and said, I think youve got Raynauds. Do you get chillblains?Now how would I know I wondered? Would I know if I had them? Anyway examining my feet shows changes in the skin and both feet are like blocks of ice all the time no matter what socks I wear. I do also have very cold hands at times and find my fingers are literally stiff with cold.
Great I thought... juuuuust what I need!

So she thinks that its caused by my blood vessels getting poor neurological signals to my feet and hands. Could be SCI related, maybe not, shes not sure. Just my luck.

Either way I was wondering if anyone else had experience of this or whether Ive just drawn another short straw!!!

cheers
L

[kewlcatkez]

Hi Lucydog,

I DO have a type of Raynauds. However, it is thought to be related to my connective tissues disorder ( EDS of mixed aetiology). I have always had problems with my circulation, but only had neuropathies and paralysis for a couple of years (EDS and unfortunate incident caused).

So to answer your question, yes I have Raynauds and paralysis, but I had Raynauds before when I was unaware of to some extent, but had EDS.

The Connective tissue disorder also means that my skin tears more easily than it should and I have stretch marks and velvety skin as well as the dislocations. The Raynauds is thought to be linked to the connective tissue gene fault. However, I believe that the circulation compromise in paralysis can also lead to/exacerbate Raynauds etc. I have always had freezing hands so much so that I had to warm them all the time before assisting patients! I always used to put my feet on hubby too. Nowadays, the constant hands to wheels also seems to worsen it I think..

I hope that you get some relief, I know how painful it can be.

Take care,

K

Edited by kewlcatkez, 20 November 2007 - 06:44 PM.

[glowstick]

I have a friend with Raynauds although she is AB, so I can't comment on it being due to paralysis. She goes close to being purple in the cold, and wears a thermal layer inside her gloves when it's cold to help keep her hands warm.

Sorry if this isn't particularly helpful, but I could ask her if she's got any advice.

[jane]

my left side is always cold, in fact my left foot is never warm and looks a different olour to my right, the same with my hands.

My left side is the side that mobility is affected, my right it is sensation more than anything else - and i never know how hot or cold that is but apparently that is warmer.

this is only since my surgery.

jane