As we know SFN can involve burning in feet and hands, I have talked to people who have had to stick their feet in ice water out of desperation. Does this mean if one has Non-length dependent SFN we will be burning from head to toe?!!

HELP!!!!!I think I am really starting to scare myself now!!!!

--and it took 2400mg/day of Neurontin just to enable me to sleep and wear clothes again; I am glad it worked for me.

and do you still take it? or the burnning just stopped?

The odd thing is, my sensations seem to stop when I am sleeping and clothes or bed sheets do not bother me at all.

How long did it take (years) to progress to this point for you.

Mine has been a year and I am on 900 mg. of Gabapentin.

Are all areas of your body affected?

I am one of the cases that has has very little burning, but baaaad dysautonomia....PN is not predictable, or consistent.

--gradually decreased from about the six-seven month point of my acute-onset body wide neuropathy, but very, very slowly.

About two and a half years in, I started to wean myself from the Neurontin--again, very, very slowly. It took almost a year of graduated down regulation (under physician supervision) to get down to zero. Each time I dropped the dose, I had a little rebound in burning--expected, as the body downregulates--that would eventually fade.

This all conincides, by the way, with repeated skin biopsies indicating that I was getting slow regeneration of the small fibers (though I am unlikely to ever regenerate completely to where I was prior to the whole escapade--they do follow me as a sort of interesting clinical case).

I still get some intermittent burning from time to time--some "flares"--but I'm probably about as back to normal as I can ever be, now seven and half years post initial attack. But, I am vey prone to parastheses and such over many parts of my body from compressive forces of any kind--even muscle building from weightlifting, or walking without well-cushioned shoes (or, this summer, heavy swimming), likely as a result of my re-enervation happening in very different patterns that my original one. Fortunately, these tend to be relatively temporary--hours to weeks--before fading to background. But they are very annoying. And sometimes bigger injury can cause symptoms to go on much longer--I recenetly had a bout of pudendal neuropathy that when on for about 9 months, and which has only recently faded, with the help of a LOT of physical therapy.

I no longer take any meds, but am on a host of supplements (r-lipoic, magnesium, calcium, B-vitamins, especially methylcobalamin, Vitamin D).