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

to - dlshaffer - yes, I have gained some weight with Lyrica. I have been on it for about six months and I would say I have gained about a pound a month - which is terrible. Now with my new "diet", I'm sure I will at worse stay the same weight, at best loose some. I didn't realize how much high sugar I ate, until I have started eating a real healthy diet. I have always eaten real good foods, but also have been a bit of a junk food junkie on the snacks. But that is changing... with the prediabetes...

I know when I was taking neurontin, I gained over twenty pounds - but I was also living a very sedintary life, and quite depressed - so I'm not sure who or what is to blame -- all I know is I have done my best with all this pain to deal with -- and with the lyrica and the cool weather finally here in phoenix, I am able to take walks with my dog - and I think that will help with everything.

Thanks to everyone who has welcomed me here - I know I need the support and I hope I can be of help to someone too --
Annie from Arizona

You mention that you've started exercising? Are you or have you been thru a physical therapist? The reason I ask is that I've kind of [no, more like often] started over w/PT more than once since my onset 3+ years ago [for various reasons]. I've found that with the help of a good PT person, they can give you a 'workout' but you have to speak up when you're getting to that point where the pain lasts longer than the rewards. Also guiding you to do all the exercises just right for the best benefit. As I put it to my PT, don't forget I'll be driving home after this...you don't want to learn about my being in 'pieces' from overdoing. So, the routine worked out for me was bits of each kind of building exercise, switching to another before getting overtired. Then building a bit more each time. The last round really worked! My balance and walking was far better since before and I felt great!

Hardest part about it all is the lack of structure once the PT is done. We have to be VERY careful and consious of our approach to these exercises that can increase our ultimate comfort and strength. The more we do, the more we can do!

Good thoughts! - j

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