Non-Length Dependent Small Fiber Neuropathy

Why did you say its doubtful to improve?

So much has changed (progressed unfortunately) with my disorders & it’s become quite frustrating to say the least….I was recently diagnosed with trigeminal neuralgia in Dec 2024 along with dermatomyositis, and let me tell ya - the winter time is especially HORRIBLE! I couldn’t even have the heater on my car blowing on direct heat, and only on defrost on low because the tingling/burning sensations on my face were excruciating & I’ve also learned that this heightened sensitivity has also caused so much havoc with the ceiling registers in the house and even vibrations in the car when I drive, which my neurologist said I kind of have the worst of both worlds going on with the Tri N and SFN when it comes to that. At some point over the past 7-8 months, I’ve developed some type of advanced infection that my GI suspects is some sort of systemic involvement with bacteria and yeast, so has referred me to an infectious disease provider…just waiting on the call to schedule the appt & hoping that maybe those were compounding my issues with the SFN and Tri N and this winter won’t be so bad, but not sure yet. How are you doing!? Would love to hear more of your story - feel free to private message (if that’s a thing?)

@sdmamaof2
I shouldn't have said that.
There is always hope.
However, neuropathy does more often worsens than improves.
How often do you see patients who's neuropathy is cured or improving on this forum? I think that adds some credence to my claim.
@alan123123 has your neuropathy improved?
@sdmamaof2, if you have neuropathy has it improved?
Take care,
Jake

I am not on this forum often but in other forums I have seen people who have had it improve several times 🙂

I think these spaces tend to be full of people more in the middle of their struggle and people are less likely to come on these spaces if they have improved. I agree though that it is less common than those that plateau ot worsen.

Wow— you are going through it. I am so sorry! How long ago was your onset of SFN and how long did it take to turn into TN and is it both sides of the face?

Hi I’m taking nortriptyline now and my symptoms have slowly improved with fluctuating symptoms. Not sure how much it’s the nortriptyline helping or my neuropathy is improving. I’m in a lot better place now than I was a year ago. I’ve changed my lifestyle. I don’t drink alcohol anymore and I find drinking lots of water staying hydrated makes a difference to my symptoms.

I think the biopsies were done for SFN in 2021. I had to relocate due to a breakup and moved from Florida to Indiana Nov 2024. So, of course, winter’s onset began along with a lot of other stressors and I had a virtual appt with my rheumatologist in FL (I hadn’t yet gotten established with any specialists here) - my symptoms at that time were showing the dermatomyositis similarities, so she gave me a bloodwork order and it confirmed that. I had gotten an appt with a rheumatologist here in Indiana Feb 2025 and they confirmed the derm diagnosis along with CREST syndrome and she reviewed my neurologist’s file from FL and my new symptoms and referred me to the neuro which took a little longer to see, but her impression was that it was TN - so officially until I saw the neuro in June 2025, I didn’t get it confirmed with the “correct” specialist until then. It’s mostly on my left side, but my right side occasionally chimes in.

I had other complications previously with the autoimmune stuff (MCTD/Hashimoto’s among others) - but had an episode where I blacked out and fell in the bathroom and woke up on the floor bleeding from my face - later confirmed concussion & still persisting damage from the head injury - so it’s unclear if the TN actually was caused by the fall in Dec 2023 and part of the post concussion syndrome or if it’s part of the autoimmune stuff or if it’s part of the SFN…It’s a crazy roller coaster I’ve been on - and my stuff came on in for years slowly but surely but heightened in April 2020 - I’ve never had Covid - I’ve been tested numerous times for the illness as well as the antibodies - i think everything has been hiding in my body for years and my “go-go-go” work my tail off long hours to live my dream life finally came to a head about 3 months after I turned 40 - - so it’s crazy when people say “once you hit 40…” “it’s all down hill from there” - they aren’t lying!!!! Because it came and hit me like a brick wall that’s for sure…

My relocation initially was a good one, but then it turned sour quickly due to my dad’s rekindling of his previous wife & her high drama life - so my nervous system has definitely not had time to rest and heal anything that was already happening & therefore, the hits just keep coming - 🙁

I am a victim of non-linked dependent small fiber neuropathy that was rapid onset. I have been on all of my skin from my head to my toes and every crack and crevice and have so far over six years. I would love to meet and talk to people then also suffer from this terrible invisible disease that can be debilitating pain wise

Welcome @blueyedawn, Having a condition like neuropathy is not something I would wish on anyone. Sorry to hear that yours developed so rapidly. While you wait for other members to respond, I thought you might like to scan through other discussions and comments from members who have mentioned non length dependent neuropathy - https://connect.mayoclinic.org/search/?search=non%20length%20dependent%20neuropathy.

Have the doctors or neurologists been able to determine a cause of the rapid onset? Have you started or tried any treatments?

Hi there,
I am so sorry you’re dealing with this pain.
Mine started up my legs in 2019 and is now all over my body! My mouth burns inside and out, my head feels like someone is pouring hot water on my brain. My neurologist thinks I have an underlying rheumatism that is not showing up yet. I’ve been on Gabapentin, Lyrica and now I am on Cymbalta. Nothing has helped.
I’m able to function daily by the grace of God!
I pray you find help soon!
You are not alone!🙏🏼