Hi - I just found out about this site from Brian - and I am happy to be here! I originally used the neuropahty.org bulliten board and then that seemed to always crash, and then moved to the brain talk bulliten board and was desperate for the months that it was down. I hope that this board is active because I rely on the support so much.

I am almost six years into this small fiber pn - starting in my hands and then a few months later went to my feet - but first they misdiagnosed me as having carpel tunnel and I had the horible experience of having bilateral carpet tunnel surgery - which made my hands on FIRE! I can't even think back to that time without breaking out in a sweat. Of course, everyone thought I was a baby - not being able to deal with the recovery pain - everyone except my physical therapist who suggested to the hand surgeon that I might have pn. Sure enough after all the testing I was idiopathic small fiber pn - at that point I went to the Mayo Clinic here in Scottsdale and had another huge expensive workup and same diagnosis - just this year I changed from a "regular" neurologist to one who specializes in pn and the first thing he did was ask for me to have a glucose tolerance test. I had been asking every doctor for this test for many years - but was told over and over that since my fasting blood sugar numbers and my A1C numbers were in the normal range, there was no need to take the test. Well, as my story goes, I took the test and sure enough I was impaired glucose tolerant - or pre-diabetic which can cause small fiber pn!! I know this is a newer idea - but it is somewhat frustrating that nobody would listen to ME - I new that I have always had erratic blood sugar. More and more studies are showing that pre-diabetic people can have small fiber pn.

This was just a month ago and I have started exercising (which is very painful) and trying to eat like a diabetic while awaiting to see the dietician - and have been giving a lot of encouragement from the braintalk friends that others have had this diagnosis and with exercise and diet have been able to reverse the level of pain they have from the neuropathy.

Currently I am taking oxy and lyrica - and I have to say lyrica has changed my life! I had been on neurontin at 2400 mgs and had such a brain fog and switched to lyrica (after trying cymbalta with no results) about six months ago and have switched my pain level from an 8 to about a 4 or 5.

I finally feel some hope in the future - instead of taking more and more drugs, there is hope that I will be able to reverse some of this pain! I am excited to be on this active board and feel like so many of us - I need the support to just get through it all - and I have gained so much knowledge from all of you!

AnnieAZ
(I noticed you already had one Annie - so I am AnnieAZ!

Hey AnnieAZ,
Glad to have you, just sorry you really need us. We are slowly getting more and more members(some of us old BT'ers and some of us new). I am so grateful for this forum. I have small fiber neuropathy also (at least I think I do, I won't bore you with all the details) probably caused by Sjogrens Syndrome. I have gotten invaluable support and help from this forum and it's members. Again, welcome!

Billye

a study on the old BT about small fiber neuropathy resulting from "pre-diabetes"/impaired glucose tolerance. It indicated that, yes, there can be some reversal of symptoms from adopting careful glucose control when you don't have full-blown diabetes.

I'd also suggest looking up alpha lipoic acid, a supplement you can get at any drug store. Read up on its effects on PN among diabetics; some pretty impressive writeups.

--on the topic of small-fiber neuropathy resulting from developing impaired glucose tolerance that has not yet progressed to frank diabetes. Unfortunately, too many neurologists/endocrincologists still suscribe to the canard that neuropathy is a consequence of years of poorly treated diabetes and only appears later in the course of the condition.

This thread has a number of articles on the phenomenon:

http://neurotalk.psychcentral.com/sh...1828#post21828

Annieaz - I was just recently diagnosed as being impaired glucose tolerant. Have had unspecified PN for close to 5 years now and I need to read some of the articles that have been mentioned in previous posts. I am on Lyrica and Tramadol. The Lyrica sure has changed my life for the better also. There have been some people that have gained quite a bit of weight with Lyrica. Has this happened to you? This has not happened to me and I have been on it for about 7 months now.

I don't post a lot, but I have gotten some valuable insights and help from all the great people here. I usually log onto this board first thing in the morning and when the OBT was down for so long, I felt lost. I did not know about this board until I saw it mentioned when OBT came back live.

Anyway, welcome.

Diana Shaffer

Glad to see you got here Annie
I would think that in time you should have a full recovery.
Just stay away from all of those high sugary carbs, eat low GI food, virtually just have a heathy diet, and you will be right.
take care
Brian

Hi Annie and welcome!
Do you have any side affects from the Lyrica?

Jonathan

Hi Annie:

I surprised no one has asked you if you are taking B-12 supplements for your neuropathy.

I am diabetic, was diagnosed with diabetic neuropathy last year, (only numbness at the time), then a few months ago, I got the pins and needles, and burning BIG TIME.

Becasue I read these forums all the time, I went online to iherb.com and purchased a bottle of Methylcobalin, which is a very good form of B-12. You dissolve a losenge under your tongue. I started at 1000 mcgs a day and now I take 5000 each day.

Made A BIG DIFFERENCE IN MY NEUROPATHY.

Now this does not happen to everybody, but in my case, it saved my life.

So why not look into Methyl B-12 and see if it's something you might be interested in taking. That and a good diet, (which is what I do every single day of my life). I went down on my insulin, lost a lot of weight, the neuropathy, well, I don't even notice it any more. So, for me, it was a god send.

I wish you well hon!!!
Melody

All these posts in this thread are from October 2006! except for the last two.

Annie, if you are still reading, how are you doing? Still on the Lyrica? Let us know how you are doing, please

Hello, I understand where you are coming from I just got diagnosed with polyneropathy and I have very quickly went down hill. I stay very depressed about it and I like you am looking for support I also need it there are days I feel like I can't make it and I have a hard time taking care of my daughter. I don't want to sound like someone fishing for sympathy but its nice to come here and see im not the only one. I too am on nerotin and it has helped some but not much, today I can't walk at all and the pain is horrible just don't know what to do.