NeuroTalk Support Groups - Small Fiber Neuropathy: update and notes

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Small Fiber Neuropathy: update and notes

So I've been treated for SFN for about a year now.

3600 mg gabapentin a day.

This stops the pain, tingling, of my hands and arms, pins sticking in my finger tips sensations, completely. I don't notice it in my feet and legs, since my PN is so profound. And not another places except my face.

But I still have tingling of my face,mostly around my mouth, my lips and tongue.

It is much less than it was. Apparently when SFN progresses to the face that is about the furthest extent of progression.

As far as I can tell it isn't: 1)disabling 2)dangerous to my 'health'. It just is what it is. Nerve damage of surface nerves that don't cause anything but discomfort.

I suppose I could take MORE gabapentin, but the facial sensations aren't painful, just weird. I can sort of 'tune them out' like I tune out my "tinnitus' most of the time.

So if you have SFN, my sense from my own experience is that it is only uncomfortable, and with one of the anti-seizure drugs, the discomfort should improve.

Hugs, Elaine

That is absolutely wonderful news ! So happy for you !

I truly wish my story with SFN was as successful as yours.

Skin punch biopsy in Sept 2013 revealed severe SFN. No A and C Fibers left in my feet.

I could only go up to 1800 mgs on gabapentin before 'hearing' muffled music and voices.

So I'm on 1800 mgs gabapentin, BuTrans patch 20 mcg/hr and 3 oxycodone 10-325 a day. And I still have severe pain.

Pain doctor says my best bet is an SCS but I will still have pain. I'm not ready to take that route yet.

I was approved for SSDI starting in Nov 2013. I have to go to bed several times a day as my feet and hands cannot take one more second of me being up. I cannot grocery shop because even the vibration of the electric carts sets off the nerves in my feet. I don't drive unless absolutely necessary. When I ride in a car I have to put my feet on my Spiderman pillow that I keep in the car just for that reason. I rarely cook....my sweet daughter cooks for me and my mom everyday. I also cannot do very much cleaning as being on my feet and using my hands will cause an awful flare.

This disease has been debilitating for me and many others.

It's nice to read a story like yours.

Thank you

Debi from Georgia

I think the feet are the hardest Debi because they take so much pressure, and it sounds like the pain you have when you aren't using your feet is like the horrible pain I had in my hands, like hot needles in my finger tips.

I have profound peripheral neuropathy in my feet and legs. Two of the main nerves are dead and one is severely damaged. They are so 'gone' that I actually didn't have pain from them.

I do get cramping, and my feet are ice cold, and look like I have Raynaud's.

The biggest disability is that I can barely walk and my feet and legs are atrophying.

I assume you don't have PN, just SFN? The seem to go together for some of us, tho' the PN came before the SFN.

As soon as I write about the SFN I can feel the weirdness in my face.

But I'm so sorry that you are suffering so. One thing I've learned is that we are all so different from normal people AND from each other, even with the same conditions and medications.

We must use great care and trial and error to find out what works for us.

It is so wonderful to have this forum for sharing.

Hugs, ElaineD

Quote:

Originally Posted by ElaineD (Post 1184689)

SFN is a type of PN. PN is a general term, with lots of different kinds.
Hope the weirdness in your face gets better.:hug: