Quote:
Originally Posted by Patricia Kelsey
Hello, I just saw your post for the sunburn syndrome. I was diagoised with this at the John Hopkins . I never heard of such a thing in my life. I have severe skin burning especially on my face and chest. I get no relief at all. I was wondering how you are doing with this syndrome and if it effects your different senses at all. It has been years since I had this diagnosis but it would come and go. Right now it is constant and I have no idea why.... I am about at the end of my rope with this because it is constant...  How are you doing with all of this.. ? Would love to hear from you.... thanks, Pat |
Hi Pat, Wayne, and Heb1212,
I'm new to the board and I am hoping to touch base with other folks who have non-length dependent small fibre neuropathy / ganglionopathy aka sunburn syndrome. I have had this since at least 2007 but had no idea what it was until I finally found Gorson, et. al's 2008 article of the same name on the web in the Journal of Neurology, Neurosurgery and Psychiatry. I didn't find it until about a year ago, but when I read the paper it was like heaven to finally read about symptoms that fit mine so perfectly. Prior to that I was diagnosed as having fibromyalgia which I may or may not have! My "sunburn" is primarily on my face and both thighs as well as just below both of my elbows. The pain was so bad that I went to the emergency room once a couple of years ago and was hospitalized in a psychiatric ward as suicidal. That was a trip.
Things have been a little better the past year as I now have a pain management doctor and am on Tramadol (as well as Lyrica, and Cymbalta from my fibro doctor). I have had type 2 diabetes for over 15 years and I believe that is the reason for the neuronopathy. None of the doctors I consulted had ever heard of this and, as far as I know, I am the only person in Hawaii with this. I'm 56 and live in Honolulu.
You folks are the only people I know with this syndrome. If you have any kind of a support community, I would love to join!
Mike