Quote:
Originally Posted by amike
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
|
Hi, Mike... I haven't been on this site for many months, and just happened to check today. I think you may have found your "support group" here. My neuro has told me he has, in fact, seen other patients with a body wide neuropathy, but it sure isn't something most people have ever heard of. It makes the experience all the more isolating and intolerable, I think. I have had a few more developments since I last posted... including a finding that I have an active, persistent virus (parvo virus b19) that I first contracted two years ago and, in a select few, can cause neuropathies. I had a sfn biopsy done a year and a half ago that was borderline with "occasional axonal swellings" and not another one since, though I am going to ask again when I see my doctor this month. I'd like to see if there's been a progression diagnostically as there sure has been a progression physically. I see you take both cymbalta and lyrica and tramadol... wow! I've been trying to tolerate increasing doses of gabapentin and just a month ago added nortriptyline. I've been very resistent to the cymbalta as I've heard the side effects can be awful with a need to steadily increase doses to achieve the same effect. I am struggling to work full time and raise a family, so it's a trade-off between chronic pain and side effects, I guess. From reading your post, I see the assumed root of your neuropathy is diabetes. Have you been offered any hope for improvement with time and tight control of your diabetes? I sincerely hope so. Patience and hope is sometimes hard to hold onto, though, isn't it? I'll check in a little more ofen to offer my thoughts, at least. My hope is rooted in the Lord... he's so much more reliable than doctors!