Good question - I also have the tingling fingers and toes. Ill be watching this space for replies from the more experienced members... I will ask my Dr when I see her on the 26th.

it could be early onset of raynauds or nueropathic in nature. hugs mine don't always change color. othertimes they do and very painful. hugs marilyn

Hin Melissa,
It could be Peripheral Neuropathy of the lower and upper limbs.
I have it and it's a result from lupus.
The tingling started mild and then progressed. My hands and feet are always cold but do not turn color.
I also have a very deep pain - like my bones hurt.
As it got worse, I feel like deep knives are jabbing in my feet and hands and it's very painful.
I had several nerve tests done and they all came back negative. I switched doctors last June and he sent me to a specialist who did an Electromyaographic examination that confirmed that I have Peripheral Neuropathy.
I looked at your profile and the medication that you're on should help. My doctor has me on Plaquenil for lupus as well as prednisone and Azathioprine. I recently stopped taking Azathioprine because I developed an allergy to it and I'll be starting a new medication today - mainly for the peripheral neuropathy.
It can be very painful so I hope you get it under control soon. I would journal it to keep track and ask your doctor for a Electromyaographic test - not just a nerve test.
Good luck to you and please contact me if you have any other questions.

Oh wow. Thanks guys. It never ceases to amaze me how many other things Lupus seems to cause. My Lord. Well the good news is I see both my Rheumy and my Neurologist tomorrow. Who should I tell? Both of them?

Hi Melissa,
Besides neuropathy, it could be a sign of APS (antiphospholipid disease) which I also have and was what I was originally diagnosed with. It can mimic lupus symptoms to a T but also causes blood clots, strokes and heart attacks. One of my major symptoms was numbness and tingling in my hands/fingers/feet/toe. It was a red flag to my rheumy to test me for this ai disease. Have you been tested for APS? There are several different tests that they use to diagnose it and treatment is very similar to lupus. It can also be common to have APS with Lupus. Definitely mention this to your dr. and make sure you were tested for it. Everyone with lupus should be tested for this Auto immune disease. If all your tests for APS were neg. then you should see a neurologist. It could be that you may even have a pinched nerve somewhere causing this problem. Hope this info helps.
Hugs

Mellssa, I had the tingling and numbness last winter. I thought it was bad circulation which made me quit smoking. It subsided a little bit. Then this last spring i began to get itchy burny feet, i thought i had athletes foot. So this went on until July. Went 4wheeling and got really hot. I had my sunscreen and my hat on just as you should when you have lupus. Anyway, two days later i get hit with burning pain clear up to my knees. OMG, like i was standing in a fire. I went to all these doctors, they thought it was a allergy. Went to the allergist, he said no this is not allergy related. He thought it was vascular , nerve endings,etc. Didn't see anything in my blood work. But he put me on Gabapentin and a antidepresent. And i did get some relief but not enough. So i went to a rhuemy and he did more bloodwork and said it looked lupus related. So i was still having quite a bit of burning which spread through my whole body. When i would get up and move around the burning would ease up, so i am thinking this is circulatory. So the rhuemy put me on nifediac. I felt a little better but not enough. So i started researching on the computer. Listing and eliminating symptoms and up comes Erythromelalgia. So i tell my rhuemy and he says well it's possible but it is very hard to diagnose. We spend all this money on these doctors and they say it's possible. So next thing i go to my dermatoligist and he confirmed my diagnosis, but wants to get the blood work from rhuemy. Anyway, it's all in there with bad circulation, constricted blood vessels. So if i was you i would start taking vitamins which promote good circulation. Thiamin, Chromium, Cayenne, Ginger. I hope that yours does not get like mine. Let me tell you it's been nightmarish!! And i am still not a 100%!! So now that i have written a book, i hope the new year brings good health and happiness for all!!

Is there a color change in your fingers? Do they turn red or blue or white? If so, then it's probably Raynaud's. Neuropathy in lupus patients doesn't usually start with BOTH fingers and toes because they are on different branches of the nerves. And nerve compression also doesn't start on both sides and top and bottom.

Watch your fingers and if there is a color change, you've probably got Raynauds.

She already stated Tracy that she has no color changes. Marilyn

Hi Melissa. I have Raynaud's and my fingers and toes turn white, red and blue and become numb. It is VERY painful and almost every change in temperature triggers it. I can't hold a cold cup or handle anything cold like cutting veggies or fruits and going from one temperature to another seems to trigger it. I'm not sure if it is Raynauds or if it is the Lupus, but two of my fingers on my right hand are permanently numb. My doctor says she doesn't know if they will ever get better. I take meds to help with my Raynaud's, but when it gets warmer, the doctor said she will discontinue them. Have you told your doctor yet?

I seen my Dr. Tuesday and he said that this can happen with both Lupus and FM (he said I definitely have Lupus and he says it may be possible I may have Fibro) he is treating me for Lupus and just switched meds and wants to see if there is any improvement at all. I will f/u in 4 weeks with him. So far I do not have any color change.

Well due to the weather I do not get to see my neurologist until the 31st. Since the tingling in my fingers and toes began I am now experiencing a lot of pain in my upper/lower arms and upper/lower legs. I don't know if this related or what. It does not feel so much as muscular but like nerves (but I am no dr. so it may be muscular)
And, my muscles just seem so fatigued. I have stairs in my home and when I climb them lately I feel like a ran a marathon. I never usually feel like that. Related? I don't know what to think. My Rheumy gave me a different med last week and said see if this makes a difference... (MTX)


luvmyanimals I read about APS. I wonder if it's possible to have that and what I have (Von Willerbrands Disease, which is where my blood does not clot fast enough). A lot of what I read about APS sounds very similar to me with the exception of the above.

Hey, luv is no longer on here DS kicked her off due to the fight with Annesse. I really hope they let her back on b/c not only has she been a wonderful. loving friend to me but she helped so many others on here as well.

It still sounds like it could also be Peripheral Neuropathy.
It starts in fingers and toes and can move up as it gets worse.
It's a deep pain - nerves.
MTX could help neuropathy.
Epson baths give me a lot of releif.
Good luck - keep us posted.

Mar I am so sorry to hear that!!!! She is so filled with knowledge... she has helped me with so much since I have joined, I sure hope they let her back on as well!!!

Thanks luckytipp. I am starting MTX today. I am dreading another med but if it helps, great. I just heard it can make you really sick. I don't feel like being anymore sick then I have been already :(
I will also give the baths a try! Thanks again!!

I know exactly how you feel - I just started Cellcept and I'm nervous about it making me worse. I've been sick since last Spring and have been worse these last three weeks due to a reaction to Imuran.
I work so hard on feeling better; I get so frustrated sometimes.
I always have to remind myself that it could be so much worse; I have a very blessed life!!
I'm praying our meds help us both feel better and get our health under control.