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ida507 posted:
Why the burning?? I burn like I'm on fire!!! I don't have shingles but, my back burns so bad at times i swear you can fry anything you want on it. Its not red it doesnt feel hot to touch it just burns and at times the tops of my feet and the backs of my hands do the same. Is this lupus doing this? I need relief from this and the dizzyness I have been experiencing for the last 2-3 weeks. Anybody, any ideas??
lupycakes responded:
Well that sounds horrible! I would see my PCP or rheumy if I were you. Sounds like some kind of nerve thing-- you sure you're not developing shingles?

Hope you get relief fast!

SafariMom responded:
I am waiting to get back to America next month for an actual diagnosis of Lupus, but I really feel like I have it.

But I have been having the burning also. I first notice the skin sensitivity in that area, and it seem like when I am in a really bad flare it starts burning. The other day my neck, face, and ears felt like they were on fire. My face, ears, also got bright red, and the malar rash was really red. But I have also had the mild burning with no color change in my skin.

(I am a nurse)
And I checked my own blood pressure and it was up from it's normal range. (Not sure how that was exactly related to the burning,but it was at the same time)

I took Aspirin and it seemed to help calm things down. I am not taking any other medications, so I know that it is not medication related.

I got a really great night sleep and it seemed like that helped calm things down as well.

Are you sleeping / eating good ?

ida507 replied to lupycakes's response:
I've told my Rhum. about it. The dizziness, the burning, the problem with my eyes.everything that is going on. Everything is just put off to the lupus. I'm told im in big trouble with this flare. I feel like the symptoms are being put on the back burner because of that. I'm wondering if other things could be causing them and they are showing up during the lupus flare or is it the lups causing them? I know ther is no rash with this constant burning. Im thinking no rash then no shingles. The burning is awful. I cant express how awful it is and even a cool shower doesnt seem to cool it down. ANYBODY with any ideas???
SafariMom replied to ida507's response:
Is it on both sides of your body? From what I understand Shingles would just be on one side our your body.

Maybe you could try some numbing spray. I know they have some over the counter. Like the kind you buy to spray on after you have a baby, or for a burn. There are also burn gel packs that you can buy online. Even though there is not a rash or an actual burn, this may help.
R Swamy Venuturupalli, MD, FACR responded:
The burning may represent a form of neuropathy known as small fiber neuropathy. Medications that help neuropathy include amitriptyline, cymbalta, savella, neurontin and lyrica as well as others. Non pharmacological options that might help include cognitive behavioural therapy, acupuncture, deep breathing exercises etc.
ida507 replied to R Swamy Venuturupalli, MD, FACR's response:
Yes I have been told I have neuropathy and I take lyrica 150mg 3times a day. They have me on hydrocodone also but the burning persist. It really get unbearable. I take cool showers try the deep breathing exercise you mentioned its just hard to get by it.
ida507 replied to SafariMom's response:
the burning is on my back and sometims on my hands and the tops of my feet and tops of my legs. id have to say 80% of the time its on my back. I've tried the gel and sunburn spray cooling agents of many kinds that havent worked. I feel like a fireball without the flames at times.

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