Lupus? Raynaud's?

[frenchiemama]

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?

[Pegster]

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]

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]

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]

  frenchiemama said:

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]

hey, i'm lucky enough to have reynaud's too !! 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...

[skbird]

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]

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]

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

[skbird]

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