Hi everyone, my name is Dee, just to give a little background about myself, I have had neuropathy for four years my internal medicine doc or neurologist doc can't find any reasons why I have this. 2 weeks ago I had intense testing at the Nerve and Muscle center of Houston to try and find the underlying reason for my neuropathy. The results were, I do NOT have diabetes, nor any thyroid condition and all vitamin levels were good. However, after various skin biopsies were taken they revealed I have small fiber neuropathy. I am currently taking Gabapentin, 1800 mg/day, went up to 2400 mg and blacked out. I do not smoke or drink and cannot handle the pills very well so I went down to 600 mg yesterday. I am in such dire pain from my shoulders to my feet. Any suggestions from small fiber patients out there?

Hi there Dee:

Welcome. My name is Melody I saw your other post. My husband could not take Gabapentin either. He got deathly ill. He used to take the Fentanyl pain patch. That was a miracle. But that was 10 years ago and they had to titrate him down because at the time you couldn't go over 125. He used to wear two patches and change them every 2 days instead of every 3 days. Neuropathy is a ***** isn't it? I myself have diabetic neuropathy. I found that by taking 5000 of the Methyl B-12 every morning, my neuropathy became virtually non-existent. I'd like to ask you if you know your B-12 levels. Because what the experts say is normal IS NOT NORMAL. My B-12 level is 2000.

Do you know your B-12 levels?

melody
And sorry if I don't respond quickly because I don't get notifications from this site if someone responds to me. I will check back. Others will also give you good input. Take care

I receive b-12 shots from my doc every three months, then I take b-12 vitamins every day, not sure if that is related to small fiber or not. I'm just trying to figure this awful disease out.......my back and ribs, left calve burns severely right now and nothing is working...........anyone to answer your questions, I don't know the level the neuro doc just said they were good and then did the biopsies and found each one suggests small fiber

Hi Dee,

Glad you have come to Neurotalk. I am fairly new myself and find it extremely helpful. I also have small fiber neuropathy. For many years I was ignored, dismissed, mis-diagnosed, etc. My NCS tests would come back "normal" and now I know they do with small fiber. I was finally sent to a pain management doctor and he is the only one that seems to actually believe that I have chronic pain.

Hope you will find as much help and comfort here as I am finding in my visits to Neurotalk.

Hopeless

My neuro specialist said my only means of support with be finding a pain management doctor. I have called three and all of them want the "point of pain" like they want me to say my back hurts, which I can say that, however, the next day it will be my calf, then my shoulder, then my feet and so on so how do I find a PM doctor that understands small fiber?:

my doctors response after being diagnosed was to find a pain management doctor, however, all of these docs what to know what hurts, is it your back, your knee? no, it's all over burning all over. how do I find a pain management doc that understands small fiber?

B-12's good, I get B-12shots every three months. What is a Fetnynol patch?

[QUOTE=Hopeless;997957]Hi Dee,


I was told the only way to get a diagnosis of small fiber is to do the punch biopsies. they didn't hurt at all and at least now I have a 100% diagnosis (those were the docs words) I have called three pain management doctors and they all want to know where it hurts, .............everywhere I tell them and they don't understand.........I have yet to find one will start looking on Monday again. Prayer Prayer Prayer

[QUOTE=MelodyL;997952]Hi there Dee:

I get B-12 shots every three months and take a supplement every day

Dee,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.