There is Raynaud's Phenomenon or Raynaud's disease, both are circulatory problems of the hands and feet. With cold exposure they hands and/or feet will turn white, and sometimes turn purple. This link shows photos.
I have Secondary Raynaud's Phenomenon, which puts it in the autoimmune catagory. Raynaud's disease is strictly circulatory, and not autoimmune. I know, it's confusing!
There is a Raynaud's group under rare diseases section of Ben's Friends and there is also a sub-group of the Ben's Friends Living with Lupus.
Well you know which one i have mate.LOL...as we have so much in common, mines Secondary Raynauds Phenonomen and it totally does my head in...typing in gloves it's pure madness.
Yes the Raynauds group on LWL is a good one...for those who have Lupus besides Fibro.
I thought I did.. since I have extreme sensitivity to the cold in my hands,feet and oddly enough - my nose! But they don't get white/purple even though they burn with pain very easily.
I find that layering all my garments helps: even gloves! I have thin, silky gloves that I wear under regular gloves and I keep those hand/feet warmers that skiiers use handy so when I have to walk the 8 blocks from car to school - I'll put those in my boots and in my pockets.
I think it's a great idea to have a Raynaud's group, too bad we can't interact between lupus and fibro. Should I start the group, or do you want to moderate it? JC had said no to you overdoing it! He's like your big brother, you know! ha!
Let me know how you want to do it, Okay? I can open it since I have administrator access here. It is only on this site that I have this status.
Looks great! Such good info on Raynaud's. It's the time of season when people need to be aware of this and how to cope with it.
The info I found for Shelly (YinYan) was news to me, did not realize it affected the nose and ears, though I know the cold bothers mine!
I will look like I'm going out eon an Artic Expedition now, and I just hate to be weighed down by a lot of gear! It's like carrying another body around! I have found lighter coats, some of mine were just too heavy!
I have a long wool one, so warm, made somewhere in Russia, so you know it's warm , but I just cannot stand the weight of it, but won't get rid of it! ha!
I linked the one discussion to you mate as you added it on LWL.
(YinYan) does affect the nose and ears when i get to bad and this weather will show it even more my nose goes deep red and blisters break on my ears with the coldness now those are sore....my dermo gave me stronger steriod plasters last time i saw him for it.
Susan i read that we're not surposed to put heavy clothes on..yes several layers but also lose between them as apparently it helps our bodies circulate better to heat.
Well i've got worse with heavy stuff on me since having the muscle wastage i do get uncomfortable and for a nice day if i do go out, i always have a long wool and cashmere jacket mixed they are warm.
I'm in my therml pyjama's now mate, socks on besides dressing gown and ste got me some wool gloves but ones for the actual pc...mind you my nails need cutting again...fingers are starting to hurt...WHAT A LIFE
You find the best stuff, I love this little creep up here, looks like us! ha! I actually think the Grinch had fibro or Autoimmune! ha!
Oh God, blisters! UGH! Terri, what will we do with you. Your husband has to be a saint. Saint Steven!
My hubs got me a beautiful long black Cashmere coat and I have yet to wear it. I had to take it to be tailored but it is beautiful and warm. Seems like everytime I want to wear it somewhere, they have dogs or cats, so I pass, and wear my washable parka instead!
NO offense to the pet owners, it is just hell getting the pet hair off the cashmere! NOW, on the other hand, since I don't go anywhere anymore, I should just start wearing it and forget about 'saving it'! I'll just be the best dressed person in the grocery store and Dr's office!
As of now I'm sitting here in my pearls and evening gown! My diamond engagement ring and my London blue topaz necklace and earrings. No high heels though, just a slipper!
You believe that, I have a bridge to sell you, girlfriend! ha! It's waterproof too! ha!
I'll call him St Steven later, oh christ i am laughing here mind you i'd be lost without him and he was up the hospital this morning himself...so always constant worry :(
I'm like you Susan i won't where descant stuff around the home not where animals are concerned pointless but how you love you jewellery, same here mate so ste always knows what to get me...we're lucky women and spoilt by our hubby's, ste buys me stuff off ebay without me knowing or if he's up town.
Oh susan leave your cashmere mate where it is...i dow go no where except if ste takes me for a meal but mine stil not coming out otherwise.
Susan with you nothing is impossible and i could just imagine it...oh mate you crack me up. :) xxx
Hey sister! Don’t think I have it but last year was horrendous. Tested for rheumatoid arthritis but was prob chilblains in the end. No definite diagnosis but I can tell its all starting again. No fun at all. Last thing we need is more pain on top of fibro. We really do feel the cold don’t we and need to protect against further problems. I’d look forward to the summer but in England it’s just wetter lol.
Don't get knocking our good english weather. lol...it's come to be a joke with hardly any summer now.
Jo i did a raynauds group on here lastnight if you want to join it and i only added about chilblains and raynauds today as i have them both and they're painful but i've had chilblains since a child.
Just checked on Adalat XL it's mainly for high blood pressure but can be used for other symptoms but it would be no good to me because of my carbamazepine, i've had strokes besides having organ problems.
If anyone want to know about the drug helping them otherwise i'll add a couple of links for them. Terri :)
