All I know is I am losing my mind over it,, I cant enjoy the sun today,, it feelsl like Ip;m burning, I dont kjnow how you people deal withit,, my armshurt and burn,, my finger tips are numb and burn,, and my neuro said today,, there is nothing more we can do,, so thats it,, leave me to writher inpain for the rest of my shortened life,,screw this

FTB: Reading the agony and resignation in your post is all too familiar. I have not been through the difficulties you have endured, but do know the pain of PN. It is not easy for most to understand how truly overwhelming the pain can be, so I’m sure you feel quite alone. You are not. We all understand, as only someone who has lived with that pain can.

There may be nothing more your neuro can do, but there is something you can do. Find another neuro. I think there are too many neuros that simply don’t want to understand the severity of PN pain, and others that actually feel treating PN is beneath them. But, there are many neuros who go out of their way to understand how debilitating PN is.

Don’t give up. There are people here who care and support you. I’m one of them. May I suggest you try checking out neuros who are members of the Neuropathy Association? I checked their website, and there appears to be a good selection of neuros in both Pittsburg and Philly that are members – meaning neuropathy is their area of interest.

http://www.neuropathy.org/site/PageS...utpo06a3.app5a

My neuro is a member, and it has made a big difference for me.

You wont believe this, but I have seen 3 of the neuros out of teh 5 listed in Pittsburgh ,, In one practice that one of the doctors practices out of,, I saw 2 neuros there,, and the very first one listed is the one that said he has no clue what is going ona nd made the recommendation for me to go to Mayo, and pushed for me to go there and got me approved by insurance,,

Craig:

May I suggest that you talk with your physician about trying "Cymbalta" for your neuropathic pain. I have had great success over the years with it for both small-fiber "burning" and other neuropathic-type pain.

One typically tapers-up with 30-mg once daily for the first week, and then goes to 60 mg once daily. However, you should wait three-full weeks after arriving at 60mg/day before judging success or failure.

If Cymbalta does not help (which it may well), then you could consider trying "Lyrica", which operates by a different mode of action.

However, whether you are on Cymbalta full strength for three weeks or a year, you must remember that when you finally decide to discontinue it you must taper off very slowly.

Best of luck ... you will get through this!

David

Small fiber definitely is a real diagnosis. My neuropathy is very real, small fiber sensory neuropathy. I do not take any meds for it as of yet, I do however use 5000mcg daily of B12, my level now is 1704, and my neuro told me to continue with this dose. I am not sure that healing is happening, but stopping the progression is very important too.

Has anyone in this thread mentioned gluten? I read many, but not all posts. Gluten intolerance does cause neuropathy too. My neuropathy was caused by years and years of misdiagnosis of gluten sensitivity. Now I'm stuck with it.

I don't think any one is disputing that small fiber neuropathy is real.

Deb, as you said, you were misdiagnosed and your Celiac disease was not found. Your neuropathy is due to Celiac Disease. I think Craig is wanting to explore what may be causing his neuropathy, and that is a good idea. I think it is wise for every one with SNF to have some tests done, even years after being told it is idiopathic. My ANA didn't convert for several years. Had I not pushed having tests done, I would not know. I think docs are very quick to proclaim it idiopathic, resulting in the etiology not being found. If there is some pathology that can be managed, it could cause the neuropathy to be controlled and not progress. I say could, because, I think that is debatable in some cases.

I do think that SNF can in and of itself be a 'disease' so to speak. It can be a stand alone condition, but, I think it is worth exploring all possibilities, especially in a very healthy person. Still even with this, 25% of all cases are idiopathic, or no reason found.

Cymbalta and Lyrica simply tune down the nervous system so it doesn't feel the pain of the condition. They are not a 'treatment'....but, thank goodness they work for some.

IVIG or in some case steroids can be used to try to treat it. The jury is kind of out on it. Some insurance won't pay for it, yet.

Oh, I have to give Glenn credit on my case......HE told me he thought it was possible molecular mimcry....I totally agree. He told me this, when I was first searching for answers.....

FTB, I am so sorry that you are going through such a tough ordeal. I understand what you said about the sun--my feet react that way, and if it's hot out I can't cover them with shoes either, so I just have to stay out of the sun completely.

Please don't give up. It's OK to say you feel that way (most of us have at some time or other), swear, cry, and whaterver else helps you vent, then keep trying. And remember that we're all here to support you in your fight.

As for that list of docs, I am scheduled to see one of them in a few months. I hope it's not one of the ones you found unhelpful.

I have my burka for the sun...at least in early summer. After that I toughen up some. Eh, after a beautiful week and plants coming up...now they tell us 7" of snow....hello???? What is wrong with this picture?

Meds can cause sun issues for some people. One has to cover up big time and be mindful of the sun. Some folks can not take sun at all.....such as in some porphyria.

It's the heat on my skin more than the UV, although being blue-eyed and fair-skinned, I can burn, too.

I found a fabulous little "personal tent" at Costco, but I can't really remember what it's really called. It was about $40 and folds up into a bag like a nylon camp chair. I can't wait to be able to hang out "in the sun" this summer with friends and family now that I have some portable shade!

After withering all winter in this dark, cold cave of mine, I can not wait to bake in the sun.....blue eyes, fair skin and all....don't care!! I want sun and warmth...no matter what the consequences. Give me my garden or give me death! Well, ok, maybe not death....