Hi Glenn,

Any idea what threads you might have posted them on? I quickly scrolled through 2 pages of posts, and didn't see anything obvious.

Here's one of them--
 

Thanks much. I'll check out the links.

That's very interesting to hear your connection btwn small fiber & trigeminal neuralgia. I have had peripheral neuropathy (Related to antibodies) for a year and in the past 3-4 months have been experiencing lancinating pains on my right face and was curious if it was trigeminal but haven't addressed it with my doctor yet out of fear he would think I'm crazy-- since your trigeminal is a a cranial nerve, whereas your small fiber neuropathy is a disorder of the peripheral nervous system.

I would only think that the two are related if you have a disorder affecting your central nervous system (brain and spinal cord).

If you have risk factors for trigeminal neuralgia (history of blood vessel disorders, multiple sclerosis, age 40-60) that would likely make you consider that it may have been a separate, isolated incident.

It would be interesting to hear back if you find out the link.

-J

I'm just wondering if anyone else with ISFN has good days and bad days with the disorder. I will have the occasional very bad day with much more discomfort than normal, and I'll have to double up on my gabapentin dose to stand a chance at getting to sleep. The symptoms may not seem worse during, but really flare at night.

I'm trying to figure what I might be doing, if anything, to cause the really bad days. I had one on Wednesday, and there were two things different from the norm that day: 1) I spent about 5 hours sitting in a car 2) I ate more gluten (bread) than I've eaten in awhile.

I'm waiting on the results of a food sensitivity test in case something like gluten is involved, but the sitting is curious to me. Yesterday I went out and played 18 holes of golf, and didn't have more than "normal" discomfort last night.

Has anyone found that being sedentary worsens their symptoms?

Thanks.

Janie

I have to take extra pain meds for any car ride over 30 minutes. I am extremely tall though (6'2"). We take breaks every hour or so for me to walk around. Airplane seats are extremely painful. I think it is very likely that the car ride had something to do with your pain increasing.

Thanks, Susanne. This is something I'm going to keep tabs on. It doesn't bode well for going back to work at a desk job.

I find that huge rapid drops in barometric
Pressure (weather) will cause me grief
Many times.

We had a monsterous storm up here
On vacation that lasted over 24 hrs and
By some coinkydink my back flared up
With severe pain that totally incapacitates
Me. I am using Lidoderm patches and
Tramadol with flexeril (small dose of it)
Just to be able to walk.

I am not going to be able to drive our
Second car home alone with our stuff
And had to arrange for our son to get
Up here to rescue me and drive me
Home! This is a first for me!
We have delayed our closing up to next
Friday... I hope the weather holds.. Sigh

Recently Dx with Idiopathic small fiber neuorpathy
 

as a result of a skin biopsy. But, my symptoms are primarily constant burning in my hands.

I get the stabbing lightening strikes in my feet, luckily it is only a couple of times a week. Last week I thought I stepped on a nail, but when I looked nothing was there. I guess if you had that level of pain constantly, you would have to pre-medicate with a lot of strong opiates. Although I have found that opiates have very little effect. Mostly my pain is constant burning in hands and feet radiating up to the knees and elbows.
Only one more month before I get my skin biopsy, to test for SFN. Not that it will help me, as I already know I have it! But maybe the doctor will get something out of it...