small fiber neuro
 

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

small fiber
 

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?:

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

Hello & Welcome!!
 

Hi. Fentanyl is a med that is released in the body via the Duragesic Pain Patch. At least that is what it was about 10 years ago. Normally the patch is changed every 3 days. But with neuropathy patients it can be changed every 2 days. I will never forget when my husband brought the prescription to the pharmacist who said "This is wrong, it should be every 3 days". I said "Call the doctor". You should have seen the pharmacist's face when the doctor confirmed his own prescription. That is the ONLY med that worked for my husband. While he had breakthrough pain and took a vicodin once in a while, the Duragesic Fentanyl patch allowed him to continue to work. He started with a 25 patch and then over the year it had to be increased. The side effect in my husband's case was extreme constipation but that is the case with any controlled substance. it slows the digestive system (that's what the pharmacist told me way back then).

But while he was on it, it worked fine. Because he went over 100 of the patch, they had to titrate him down and then stop at 25. He could not get off the 25 by himself and had to go to detox but after one day they released him saying "We didn't detect any drugs in your system". He said 'what are you talking about, I walked in wearing a 25 pain patch". /They said "too bad", you are going home. He then had to do full withdrawal in the bed for one week.

Neuropathy is a *****. Hopefully (and this is the present) there are some other options for people with bad neuropathic pain.

My husband's pain was much worse 10 years ago. He takes nothing for it now. But he does have his days.

Sorry I can't be more helpful

Melody

Hi Dee
 

You are fortunate (sorry to say that under your present condition) that you were finally were diagnosed. You probably got the run-around that some of us have had where MDs kept implying that things were only in our heads or that we were drug-seeking for narcotic pain relievers. It really p***** you off when you are in so much pain.

There have been posts on full body small nerve fiber neuropathy (which is MUCH MORE RARE than typical SFN) and it is referred to as:

non-length dependent small fiber neuropathy
non-length dependent small fiber ganglionopathy
Small fiber neuronopathy
sensory ganglionopathy or sensory neuonopathy

Your use is the first time it's been called full body small nerve fiber neuropathy, but that's pretty descriptive. I've also heard it called sunburn syndrome.

When I was at wits end, I found a couple of academic articles that really helped me understand that I wasn't just imagining this. You can find the references in this string:

http://neurotalk.psychcentral.com/thread189923.html

Also, a most experienced person with this is moderator glentaj who is very knowledgeable. You should check out his posts especially when he is talking about ganglionopathies.

The discussions on related issues occur on the Peripheral Neuropathy board. Feel free to PM me if you want copies of the articles I referenced or just to talk as I have NLD SFN/G also!

You need a referral...
 

...To a pain management doctor from one of the MDs familiar with your case. Pain management docs get thousands of "walk-ins" and a significant portion are people looking for drugs for abuse purposes. Also once you are referred, bring the articles I talked about earlier and some statements from a neurologist as to the pain levels you are likely experiencing. Good Luck,

Mike

Is yours length dependent? Is it all over your body, constant, intermittent/random, or lower body like feet?

If it is in your feet it couldn't hurt to try a diet called "nutritional ketosis" which lowers the glucose you have. Maybe they are wrong about diabetes and it is just the glucose that is toxic to the nerves. Search for "Jimmy Moore" and "nutritional ketosis".

currently on 300mg of Lyrica, guess im one of the lucky ones, have no side effects and 80% pain reduction