I have been reading threads for a few years especially when I first started having symptoms. Alas still no diagnosis after all the testing except my skin biosposy was positive for small fiber and some autonomic test were abnormal.
I have had on and off (yrs) very red skin rash on my chest. The Rash usually means my neuropathy is about to flare. My worst symptom is extreme disabling fatigue .Oh yes I'm female age 55 .
The NEW sign is intense skin burning sensation even through my jeans and when I roll them up the skin is turning RED, As if I've been out all day and getting sunburned. The red skin and burning will stop in about 10 minutes inside the house. The skin is bright red even under the clothes.
Has anyone else had this symptom? I understand the burning to be a normal part of PN but i only feel burning while in the sun and the red skin is from the sun. What is that about?
I have had extensive testing for PN which ruled out the most awful diagnosis but as I'm know most of you understand i cannot let it rest at unknown because it is wrecking my life so i can't quit trying to get better.
Thanks in advance
Savvy

I wonder if this is a form of porphyria?

There are several types, but most involve sun intolerance.

Drugs will also set it off, and some forms are acquired.

Only a specialist who has experience can test for this, as it is pretty complex. Untreated, uncontrolled porphyria can lead to PN.

Niacin will also set off red skin/flushing as well. And some drugs are photosensitive...the redness does not have to be only on the sun exposed parts.

Hi,

Can only say that I tanned all my life with no problems. The skin burning sensations started in January, but the only redness was face flushing which is autonomic nervous system/small fiber non-length dependent neuropathy, both dx'd back then. Face flushing still happens but not that often anymore.

However, don't dare go out in the sun for even ONE MINUTE until winter comes without an umbrella and/or very wide-brimmed sun resistant hat I bought on-line from Solumbra because I burn instantly. Oddly, arms and legs aren't affected as is the face.

Small fiber neuropathy and Sjogren's Syndrome can and will in some people dry out the skin in the extreme because it wipes out the body's moisture glands. I'm a probably Sjogren's case as well as NLD SFN.

Sorry I can't be of more help.

Sheltiemom

P.S. Have any of your docs checked out vasculitis?

I had a nasty photosensitivity reaction. My legs and arms were covered with bright red spots, millions of them. It turned out the culprit was simvistatin(Zocor) I think. My dermatologist diagnosed all of it. It didn't happen in a minute, but it was pretty intense, FWIW.

There is a condition called Erythromelagia.

My feet and face freak out when exposed to direct sunlight. All of my PN symptoms are idiopathic at this point, so I guess this isn't very helpful to you. Just wanted you to know you're not alone.

http://en.wikipedia.org/wiki/Porphyria

Porphyria is not common, but those who have it often have
autonomic symptoms, as well as redness of the skin when exposed to sunlight. Neuropathies are common with it.

Taking certain medications by people with Porphyria can induce an attack.

You can acquire it later in life or be born with it (genetic).

It sounds like Erythromelalgia(EM) to me. Does it go away with cooling? If so could definatlely be EM.

I have looked up porphyria but it doesn't fit my symptoms. The sun sensitivity is a new sign. The redness doesn't last long once I'm out of the sun but it is too painful(burning)to stay in the sun when I'm having an episode. I get the burning through my clothes even jeans and the skin turns temporally red.
I always hope a new sign will point towards a diagnosis. The burning and redness is back, chest and legs only but I will break out sometimes in an itching ,ugly, chest rash that lets me know my fatigue and ill feelings are about to return.
I am also heat intolerant and my temperature gauge is out of whack. It can be broiling hot and I think its pleasant till suddenly I get sick from the heat!
I'm not taking any meds but B12, Vit. D sometimes tylenol sometimes cortisone cream for the rash. I hate drugs and believe so many of them are making people very sick. JMHO
I have so many MS symptoms but luckily do not have MS (MRA).
Thanks again

This link to the Merck Manual has more information on
sun exposure allergy:

http://www.merck.com/mmhe/sec18/ch214/ch214c.html