I am suffering from most of the symptoms of this phenomenon and i was wondering if anyone else here with MS suffers from it and can tell me in layman terms more about it.
I have a gp appointment on Thursday but any information would be good for my peace of mind.
Steph
I was told i had raynauds before i was diagnosed with MS, i have always suffered with the cold turning blue in the lips, hands and feet. I also get pain in the wrists when my blood ciculation would get blocked at the wrist and my hand would either go blue or burning red. this has all improved by itself in the last few years and only comes up rarely now
It’s a right bloody pain! The circulation seems to slow right down or speed right up, going from no feeling to super sensitive in different areas of the body I’m effected manly in my hands and feet. They can turn completely white all at once then blue,back then roaring red before turning back to normal, although they are so painfull and looks real ugly. A neighbour asked me one time why I had dipped my hand in a pot of paint??? I can’t seem to control it and my Nero tells me to keep hopped up. If you look around your body you will see (NOT if your luck) what he calls webbing it looks like criss cross blood vessels. For me it’s a quick change in tempeture ie going inside/outside changing from one set of clothes to another. Does it or will it go away? I’ve no idea each attack takes a few minutes to start and worse case 15 mins to return. Hope this helps x There is clothing socks gloves shirts etc you can buy I’ve the socks and gloves which do help do a search for Reynolds syndrome clothing,
Just been reading about this on AOL http://hotsearch.aol.co.uk/2013/01/30/raynauds-disease-the-facts/?icid=maing-grid7%7Cuk%7Cdl7%7Csec1_lnk3%26pLid%3D149689 might add to your info.
Hi Steph,
There was something about this earlier in the month.
I take nifedipine for my Reynaulds - gives me a nice glow for a while but still have to wrap my whole body up well.
Just bought some feet warming pads to put inside my shoes and boots if it;'s really cold.
Good lcuck with the GP let us know how you get on.
Jen xx
Hi
Thank you for all your replies, well i was at the gp today. Her suspicions are that i do have reynauld’s but it could just be my ms and to phone my nurse.
The gp did however give me that nifedipine that goldrat mentions to try, she said if it works it is reynauld’s and if it doesnt then its just my ms.
when i rang the ms nurse she dismissed raynauld’s altogether and told me it had to be my ms, that my brain was short circuiting and causing all my symptoms. That there was nothing i could do but wear gloves and socks to bed etc.
But when i was researching the reynauld’s it told me that it can be caused by an auto immune disease so it would be my ms and not two separate things.
Now i’m afraid to take the medication in case it doesn’t work and i learn that i have no relief from this as it’s affecting my work, sleep and everyday tasks now.
S
Hi Steph,
Wondered how you got on at the GP. It’s worth trying the nifedipine - it’s not addictive and I haven’t found any strange
side effects justm a warm glow and it’s cheaper than having the heating on. I think it is associated with MS, but who am I to say.
A kind friend bought me a present today a HotRox - rechargable hand warmer. 2 settings, medium and high heat. lasts for up to
6 hours on medium and can be switched on or off. It’s charging now so will let people know how I get on with it.
It’s on the reynaulds website.
Keep warm,
Jen x
I noticed that my feet and hands were always freezing, regardless of how hot the weather was, sometimes in summer I experience this too. I seem to experience a warning of bad weather to come due to chapped lips and again freezing cold extremeties.
My gp shook my hand and said: blimey your hands are frozen, they shouldnt be in this mild weather, so she concluded I did indeed suffer Raynauds as she further delved into my other symptoms.
Blue feet and hands, blue lips and effects of cold like very dry skin or flakey skin can indicate too. Im not sure about any treatment, I didnt get any, but have noticed after taking vit.d3 for a couple of years, my skin has improved quite dramatically yet I still suffer freezing feet and hands regardless. Thought it may take away some of the cold but nope.
You are not alone, that helps knowing others also have it.
bren
x