Idiopathic small fiber neuropathy

janieg · 08-26-2014, 12:28 AM

Thanks for the replies. Obviously I have company...unfortunately.

I'm not giving up yet, but am getting close. My alt med doctor is willing to keep at it with me, so I'm going to give it a few more shots I'm taking some tests that I don't "normal" doctors would order, so we'll see if something turns up.

Next up will be a test by this lab by Cyrex Labs. They won't let me post a link, so you can Google it if you like. I like what they say, though:

"Cyrex™ addresses the cross-connections between the body’s endocrine, gastrointestinal and neurological systems which play a significant role in the development of today’s complex disorders."

wildcovey · 08-26-2014, 04:23 PM

I was diagnosed with Idiopathic Small Fiber neuropathy in 2012 at Barnes Jewish in St. Louis, MO. Since, my neuro doctor and I have had a hard time communicating on symptoms and questions over the phone to a point that my primary care physician is thinking of sending me to Mayos. Is there one particular facility that specializes in this disorder or that folks have had good luck with?

Tony
Missouri

Kitt · 08-26-2014, 04:49 PM

Welcome wildcovey.

JHop11 · 09-01-2014, 09:14 AM

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

janieg · 09-06-2014, 10:21 AM

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

Susanne C. · 09-06-2014, 12:16 PM

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.

janieg · 09-06-2014, 12:19 PM

Quote:

Originally Posted by Susanne C.

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.

mrsD · 09-06-2014, 01:17 PM

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

Tarlov Australia · 05-01-2019, 12:45 AM

Quote:

Originally Posted by SFNgirl

Hi, this is my first post, am totally new to this sort of thing. I started reading your posts over the last few weeks and decided I should join. You all have provided so much helpful information, very appreciated for the newly diagnosed.

I began having back pain and nerve symptoms last October, and after months of tests, was diagnosed in january through skin biopsy with idiopathic small fiber neuropathy. I have gripping pain in my feet and freezing burning pain in my feet, legs, torso, back and neck. My hands mostly just go numb periodically, mostly at night in my sleep. In the midst of this, in December, I had an extremely painful attack in my face which took me to the ER and was diagnosed with trigeminal neuralgia. In hindsight, my doctors do not believe its that but somehow related to the rest. Have any of you had this connected to your trigeminal nerve?

I am taking 2700 mg of gabapentin, Tramadol, Nortriptyline at night, and just finishing 2 month trial of steroid infusions. None of it seems to help.

I have seen mention from a few of you about a smaller subset of non length dependent type of SFN, given my body wide symptoms, am wondering if I fit in that category. And if so, is this something to pursue that might lead to an identification of an underlying cause or different treatment plan?

Thanks for listening,
SFNgirl

Hi SFNgirl
I was taking Lyrica (same as gabapentin) for my nerve pain and it helped for a while then stopped, I wasn't prepared to keep increasing the dose so weaned off it under medical supervision. I'm finding that R Alpha Lipoic Acid (natural substance) is helping me just as well as the Lyrica was. May be worth a try, but make sure you get the one with R in name, the one without isn't natural.
Hope it can help you as it's helped me.

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