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Originally Posted by St George 2013
Good morning ..... my name is Debi and I'm from Georgia...just had about 4 inches of snow here !
My small fiber neuropathy is diabetes/chemo related. I'm going on 9 months now after sudden onset a month after chemo ended. I've had to be my own advocate and bounced around from dr to dr until I could find some help. I'm still in the middle of my journey. I did ask a foot and ankle dr to do a skin punch biopsy and he did....I have zero A and C fibers in my feet and they say 'severe small fiber neuropathy.
I have a neuro that I'm not very fond of but will keep seeing until I have my appoint March 25th at Emory in Atl. For quite a few years before all this happened......I remember at the end of the working day being in the recliner and my toes burning like fire coming off my toes. I'd sleep and be fine the next morning. During chemo my A1C went up and between that and the chemo of taxol/carbo that pretty much did me in. Almost exactly a month after chemo ended I could barely walk and also had the horrible electrical currents running thru both feet.....it would actually outline my toenails and fingernails like someone was tracing them with an electrical pen or something. I've gone thru the whole range of symptoms and still have them. My neuro got me up to 2700 mg a day of gabapentin/Neurotin but my brain could not take it....made me unsteady and my mind was basically mush. So in Dec he lowered me back down to 1800 mg a day and that cleared my head but didn't help the pain. He recently added 60 mg a night of Cymbalta and it has actually made me feel better but has done nothing for the pain but has allowed me to deal with it better........of course it's been a double edged sword....because I 'feel' good I want to do stuff around the house that I have been unable to do (clean, cook, do laundry, sweep, etc) and that puts me in the bed like it did yesterday. I have to sleep with my feet hanging off the side of the bed and no covers touching them.
My PCP of over 5 years gave me vicodin and Xanax when this started in May 2013 and increased my Paxil to 40 mg a day. My neuro would rather I did not take these. My PCP had told me to get on a pain mgmt. schedule but I refused to until Sept 2013 when the pain became so bad I realized I had to take them regularly. So now I'm on 1/2 a 7.5 vicodin every 3 hours and Xanax when that doesn't do it.....which is about 5 to 10 times a week.
This has been overwhelming to me and I've had to file for SSDI. Not approved yet...in the reconsideration stage at this point and waiting for approval or a denial.
My neuro has asked me if I think the gabapentin is working and I told him I was not really sure.....I still hurt and have no daily quality of life but who knows how much worse I would be now if not on the meds ? Probably in a fetal position in the floor thinking I was dying.
I am surrounded by a loving and supportive family so that helps a great deal. They help with the cleaning and cooking and grocery shopping.
Not sure if any of this helps and I am long winded and 'chatty'......guess I just needed to get it all out there this morning 
Please keep us posted.
Debi from Georgia |
Hi was reading your post again and was wondering how you are doing.
You have Diabetic Neuropathy like I do and am on Garbapentin, I am on 1800 mgs too.
I had a good week with maybe a 2-4 with symptoms of numbness, burning and hurting.
Then had an bad episode nothing I did would help the water jets, cold water, massage, lotions for neuropathy was just miserable and depressed.
I had some cool whip the night this happened more than enough probably 3/4 of a cup and almost right after the monster started with the pins and needs and numbness.
I was wondering how many carbs a day to you have and if you noticed flare ups after having too many carbs.
I may have a day or two with very little symptoms which I can tolerate.
What works for you when you have flareups.
You said you brain was mush with the Garbapentin I noticed my thoughts are in a slower motion and I do forget but remember after back tracking.