I too get this peripheral neuropathy. I get it in my right hand and my feet.
Docs have NO idea why. I haven't pushed it to see about getting to the bottom of it.
I have SLE and vasculitis... And this problem got worse (exponentially) after I had my last heart surgery.
hi again everyone! as with you chicibug, i have vaculitis along with my sle too (can i have fries to go with that shake! :lol: i also have brain, heart, and lung involvement).
off topic for a moment - i dont know how else to explain the sle and the cns-sle stuff without eing all long winded! per my doc's, i thnk the sle is the heart/lung and regular 'ole lupus stuff, and then the brain stuff is the cns-sle, which the doc says is different, but the same???? so why cant i just say cns-sle? wouldn that cover everything? if you have a way to say all that better, pls let me know!! :roll: :lol:
so anyway, based on my docs, and a pathologist friend, hte neuropathy is the inflammation effect that the sle causes. in some people its true vasculitis (due to the sle maybe, like me). so much overlap that it hard to know which is what :x
hope this helps! :wink:
Oh yeah, that's right!
"so much overlap that it hard to know which is what"
Ain't that the truth!
I get it too
My hands all the way up to to my forearms I get the tingling sensations and numbness. I can deal with it fine I guess. I wish we could all get together somewhere - which I know is impossible- and meet and just vent and talk. It would be a nice thougt now wouldn't it! I hate to be a burden to my husband alway feeling funny or bad or tired all the time. But he is wonderful to me and understands. I have a 2 yr old too that really lights up my down days...He is great therapy. I just don't have time to be sick, ya know! Anyway, I hope this helps ya'll to know that we are all in this together. :lol:
Get together idea
You're right Tbird! A convention would be a great idea. San Antonio is a great convention site!
Sounds like raynauds is common amongst us lupusites! That was the first symptom that I experiences. It gets worse over time, then when the correct medication regimin is found, it abates, except in the winter. I am working on ways to keeps my fingers warm in the winter, since I live in northern New England, it's not easy. I am trying make fleece mittins with a pocket inside for a warmer. It's the little things you don't think about, the door handle, the steering wheel, the keys! Then the fingers and hands blanch out, get all white and tingly. Then they just plain don't work. It's a pain in the patute, but I found that a parafin spa (cheap at Walmart) with the hot wax is wonderful!
the tingling pins and neddles feeling is called raynauds phenomen its a condition in which the blood vessels in the fingers and/or toes go in2 spasm when triggered by factors such as cold, stress or illness
i get the same thing sumtimes