Erythomalgia with PN
 

Hi,
With my normal nerve conduction study and punch biopsy coming back normal, I ways diagnosed as Polyneuropathy secondary to another disease, the neurologist is thinking SLE Lupus. Since my symptoms are burning pain, and freezing numbness, I have always wondered if it was more vasculnar in nature. My feet actually get very hot physically, and get bright red on the soles and palms of my hands, they will also be pulsating with my heart rate, then at other times they will be ice cold. my first Rheumy felt my hand when I was getting a exam, she said, "are you going into shock,your hands are very cold?" I told her this was normal for me, hot hands or cold hands... the. On diction has been like this from the beginning. I do get the lightening strikes to, like my foot got poked with a sharp object, but they are rare.
Do any of you have similar symptoms?

Yes, I get red fingers and toes sometimes. My doctor was concerned... when I had that lupus reaction. In my case it is just the first joint of the fingers. Sometimes at night I have throbbing
in my hands. I don't get it in my feet though. I will get throbbing in my neck or upper jaw too. I use the magnesium lotion for that neck discomfort with a good deal of success.
I have a red deep rash/discoloration on my forearms. It doesn't itch or hurt or burn, or go away with hydrocortisone lotion or antifungals. It appears below the skin.
My doctor said it is a lupus thing most likely. It often blanches out when I lie down, or raise my arms up.( it resembles tinea versicolor, but it is not that-- and is more pink). This mystery discoloration, was much worse on lisinopril, which was poisoning me, and improved markedly when I stopped that. It just hasn't gone away completely. :rolleyes:

At night my feet are either too hot or too cold. I just stick them out from the covers or put them in. Been doing that for years...it is just automatic for me.

The flushing can be a serotonin thing. If you take an SSRI, Cymbalta, or amitriptyline/nortriptyline...you could flush too.

Jon,

I'm glad to hear you are moving toward a more fleshed out diagnosis. I was wondering, do your symptoms rule out any of the diseases that your polyneuropathy can be caused by?

I don't have symptoms like that, my feet get cold but the sensation is not what I'd have called cold pre-PN- I just know it means it now.

I do have issues with heat which seem worse. The extra cold temperatures plus young kids has meant turning the heat up. I'm pretty sure 65/68 while in shorts and a t shirt should be comfortable. Some days I feel like I am on Dante's Inferno: The Experience. Thankfully there are still moments and even days where that is not so.

I hope you find solutions and answers.

My best,

Another no 'H' Jon

I have had the same symptoms since it began almost 30 years ago, the red palms and feet, I thought was just part of the PN, which it can be.
I have pretty much the same routine, feet are outside the blankets. In the summer (350 days a year in San Diego) I have burning feet and hands, and when it's s cold, freezing feet and hands, so cold that if you touch someone they jump! I remember my foot doctor commenting that he needed me around the office to warm the place up with my feet.
The pulsing is in the hands up to the wrists, and feet up two the ankles, and only when they are burning. I always thought it was high blood pressure causing it. I have had the sensation in my neck also.
I did get hives like symptoms today, breaking out in itchy welts for 2 hours. but maybe it is just the niacin, which I think I will stop taking! This is the second time in a weeks with the welts.
Jon@ Body temp is either to hot, sweating, or two cold. I make I a point to check the thermostat and it is usually me. I get the pins and needles in the upper back, kind of shivers.
Better with no H.
Jon

Niacin certainly causes flushing!

This reaction may be blocked by aspirin.

The chemical responsible for the flush is in the skin.

The aspirin has to be taken at least 1 hr before the niacin to
work.

I'd stop the niacin and note what changes occur, that way you
will learn more, I think.