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Lupus? Raynaud's?


frenchiemama

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frenchiemama Collaborator

I have an appointment this Friday for some tests, and Lupus is apparently first on the list.

The list of symptoms that I have aren't really severe, but I had celiac disease symptoms for 10 years that weren't very severe either and I'm not about to let something else go for a decade.

My main question is about Raynaud's phenomonen. My hands/fingers and ears turn a dark purpley-red when I am cold (not outside cold, even a somewhat chilly room will do it) but it doesn't hurt. I keep reading that Raynaud's is supposed to be really painful. My hands get a little stiff, for example if I'm sitting in a cold lecture hall for 2 hours I'll have trouble holding my pen, but it's not painful. Could this still be Raynaud's?


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Pegster Apprentice

I have Raynauds. I have had it about twenty years. I have no idea if it is at all related to celiac disease. When I am cold (or very stressed out- which isn't that often) I lose the color in my fingers (and toes sometimes) My fingers look dead and bloodless. It doesn't hurt; it just tingles until the blood starts to come back into my fingers. Then it can be painful. Raynauds can be associated with other, more serious, diseases, but it's just something I deal with. I live in California, so it's not too hard to keep my hands warm. Your symptoms don't really sound exactly like what I have.

mytummyhurts Contributor

I have Raynaud's too. It just started last year, a little after my celiac symptoms showed up. But I don't think Raynaud's is related to Celiac, it's more associated with other autoimmune disorders like lupus, which we are more likely to have once you have one autoimmune disorder. They think I may have lupus or some other similar disorder, but I have actually had flare-ups where my joints swell and get really painful, I have a fever, problems breathing, sore throat, etc. I have had two of these flare-ups in the past 7 months.

I haven't really found Raynaud's to be that painful. It's really creepy looking though and it freaks people out. My fingers either turn totally white or really purple/blue. I don't have to be outside either, during the winter it's really bad though.

frenchiemama Collaborator

My feet turn completely white when I'm cold, I just thought of that. They look dead, it's gross. I've never really thought about it before, but sometimes my fingers turn white too. Who knows. I guess I'll find out, right?

Guest jhmom

I have Raynaud's too and my feet and hands usually hurt when I get cold but they don't turn red or blue but like you they turn white but vessels in my hand shrink. I get cold when the temp is under 78 and my hands and feet are always the first to get very cold! I also have other autoimmune illness' (Lupus and Hashimoto's).

Hang in there! :)

mytummyhurts Contributor
My feet turn completely white when I'm cold, I just thought of that. They look dead, it's gross. I've never really thought about it before, but sometimes my fingers turn white too. Who knows. I guess I'll find out, right?

<{POST_SNAPBACK}>

Yeah, I have issues with my feet too. They turn numb a lot, sometimes when we go on walks when it's not very warm. I'm liking summer weather, I've almost forgotten about this things. When winter comes again I'll probably be reminded. :(

jenvan Collaborator

hey, i'm lucky enough to have reynaud's too !! :P i get the purple/bluish discoloration too, but a lot of times it manifests as red, slightly swollen spots. I also used to get severe itching in the afternoons when my fingers would finally warm back up. now that i know about it, i can prevent it most of the time, by making sure my fingers don't get cold... ie. in the winter in my office i wear fingerless gloves :) or if i feel them starting to get cold i submerge them in warm water for a while...


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skbird Contributor

I had Raynaud's for four years, ending about 5 years ago. My fingers never turned blue but they did sometimes turn white (and often just one or two, or parts of a couple, never all of them, and usually just my left hand for some reason) and when they turned red they hurt from a mild ache to really bad pain (like a severe migraine). At the worst it would hurt so bad I'd try to smash my hand between two cushions on the sofa to try to counteract it.

I recently had some hand pain that was very similar but I don't know if it is starting up again or not. I am in the process of being tested for Lupus and some other connective tissue diseases.

Many people have Raynauds and no connective tissue disease, but it can be a part of the disease. If you have Celiac or autoimmune gluten intolerant, you are more likely to have other autoimmune diseases, from what I've read.

Stephanie

hsd1203 Newbie

I've had it for about 10 years, it has gotten better since going gluten-free (and moving south!) and sometimes it was just uncomfortable (when they get purple/red, like you described), other times it is downright painful (tears and everything), but that is mostly when I get really cold and my feet turn white and completely numb and then the pain comes when they have to warm back up.

good luck with the tests and all.

Pegster Apprentice

My Raynauds has also gotten bettter since I went gluten-free. I never really thought of the connection before. Hmmmmmm!

skbird Contributor

Actually, this has me thinking. I think my Raynaud's went away when I stopped eating nightshades. I stopped them because I realized they were causing a toxic reaction in me and I was getting very sick from them - had my whole life. (Nightshades are potatoes, tomatoes, peppers, eggplant, tobacco, kava kava). I would get migraines and stomach problems. There are mixed theories on their being avoided in the case of arthritis as well as rheumatoid arthritis. I wonder if their influence on connective tissue disease is why my Raynaud's went away when I stopped eating them? Hmmm.

Stephanie

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