Thread: Glenntaj
View Single Post
Old 03-07-2016, 07:32 AM
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default My symptoms were primarily dysesthetic pain--

--body wide; what you describe as sunburn, in all likelihood. I used to say "imagine you've gotten a bad case of sun poisoning and then someone rubbed it with steel wool, all over your body". I also had bouts of tingling, electrical jabs, and the like, and still do from time to time.

For the first ten days or so of this, until I began taking gabapentin, I deteriorated rapidly--couldn't sleep, couldn't eat, couldn't wear much of any clothing, lost weight, etc. I remember that first dose of gabapenting making enough of a difference that I feel asleep from sheer weariness. Ramping up the dosage quickly enough, even with some "loopiness" side effects, did enable me to be functional in a couple more weeks, so I could start researching this mysterious onset. The pain wasn't gone, but I could do things.

I'm fortunate my career in test prep is flexible enough that I can make my own schedule, but yes, I did miss about a month entirely and shunted many students to other people, and then built back up slowly over the next few months. (My students were quite aware something was wrong as I was very public about my experience once I had enough relief to communicate electronically again. My name is still very well known in the neuropathy and medical advocacy communities--google "glenntaj neuropathy"--as I wrote extensively, including here, how my initial visits to local neurologists were next to useless and how so many of them were clueless; it took my own research and advocacy to finally get an appointment with the Cornell Weill Center for Peripheral Neuroapthy about three months into this to finally investigate through targeted testing and skin biopsy the possibility, which I had discovered through my own research, that I had experienced an acute onset small-fiber syndrome--a possibility no one seemed to know about until I got to Cornell.)
glenntaj is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (03-24-2016), echoes long ago (03-24-2016), heb1212 (03-25-2016), Idiopathic PN (04-05-2016), Pika428 (04-03-2016), pinkynose (05-17-2019)