Small fiber neuropathy (SFN) experiences

Hi everyone,

Does anyone know where I can go to get properly diagnosed with this—maybe via a skin or nerve biopsy? My neurologist and I are both leaning toward this being the culprit, but unfortunately, the clinic I’ve been visiting in downtown Chicago doesn't offer these specific tests. It’s a bit frustrating because I seem to be checking off every single symptom on the list, one by one. I would truly appreciate any leads or information you might have!

Anyone out there?

I don't know, I personally dealt with intercostal neuralgia—that was my official diagnosis after they ruled out everything else, and the symptoms lined up perfectly. What exactly are you guys dealing with? Where on the body does it hit you? And what kind of pain relief actually works for you?

Greetings,

I’m experiencing this all over my body—paresthesia, an extreme sensitivity to the touch of my clothing, and all sorts of bizarre, painful sensations. To make matters worse, nothing I take for the pain seems to offer any relief at all.

Harold Reed4 said:Hey there,

I get this all over my body—paresthesia, being super sensitive to how my clothes feel, and just all these weird, painful sensations. And honestly? Nothing I take for the pain actually helps.

So, what have you guys actually tried for the pain?

I’ve cycled through Tramal, Lyrica, Neurontin, various antidepressants, and even anti-epileptic medications, yet I haven't seen even a 1% improvement in how I feel.

And what are the odds that some random group of anonymous internet strangers on a forum is actually going to know more than your own neurologist? 🤷

The odds are actually quite high that someone out of a million people here has dealt with a similar issue, which means there's likely someone who knows exactly where to turn. I'm not looking for medical advice or a lecture on what this condition actually is; I simply need to know which specialist or institution to contact. This forum is full of people living with the same thing who possess that specific knowledge. I’ve already sent a private message to some of you regarding this, though I haven't heard back yet. If you aren't in a position to offer actual guidance, I’d sincerely appreciate it if you didn't comment just for the sake of it.

If none of those meds actually do the trick, then honestly, we shouldn't be surprised when nothing else works either.

Harold Reed4 said:There's a much higher chance that someone out of a million people here has dealt with a similar issue, so they actually know who to reach out to. I'm not looking for medical advice or a lecture on what this condition is; I just need to know which specialist to see. This forum is full of people living with this exact problem who have the answers. I already sent him a private message, but I haven't heard back yet. If you can't be helpful, please just refrain from commenting.

Have you tried getting in touch with Dr. Bakran over in Palm Springs? From what I understand, he's one of the leading experts on neuropathies here in the States.

restlessbadger2 said:Have you tried reaching out to Dr. Bakran over in Palm Springs? From what I gather, he’s one of the leading specialists for neuropathy here in the States.

I did, actually. He referred me over to the Mayo Clinic, but I hit a total dead end there. It’s been a nightmare—it started with this burning sensation in my feet, then the tingling and stinging spread until it hit my entire body. Now, I’ve developed allodynia; even my clothes feel like they're made of sandpaper against my skin.

Harold Reed4 said:I did, but they just referred me over to the Mayo Clinic and nothing came of it. The burning, tingling, stinging, and numbness started in my feet, then spread to my entire body, and now I've developed this sensitivity to clothing—allodynia, if you want to be technical. Wearing clothes feels like being rubbed with sandpaper.

Does this happen all over your body, or is it localized to specific areas? And if it is spreading, where exactly are you feeling it most?

restlessbadger2 said:Does this show up all over, or just in specific spots? If it's localized, where exactly?

It’s my entire body.

Harold Reed4 said:My entire body.

Has anyone here experimented with medications like Neurontin, Lyrica, or Cymbalta? Does any of that actually provide some relief?

edit: I just realized looking back that you all have already tried pretty much everything.

You should just head to a pain management clinic—they have them at basically every major hospital, and you'll find actual specialists there.

Karen Campbell59 said:Just head down to the pain management clinic; every major hospital has one, and they’re staffed by actual specialists.

Well, I did exactly that, and all they did was hand me a handful of medications that haven't done a single thing for me. Their big solution? They told me I need to track down an immunologist and figure out my next steps from there...

Harold Reed4 said:I reached out to them, but they just handed me these medications that aren't doing a thing. They told me I should follow up with an immunologist to figure out my next steps...

Does anyone have a recommendation for a good immunologist? And more importantly, how do I even get an appointment—who should I ask for a referral?

How are you holding up lately? Did you end up getting that skin biopsy done yet? I’ve been dealing with some symptoms myself... starting to suspect it might be this...

Harold Reed4,
Are you hanging out around here somewhere?
How did things go with the immunologist?
I know that with certain autoimmune conditions like Sjögren's or sarcoidosis, SFN can sometimes tag along.
I'm guessing they might treat that with steroids 🤷 🤔 ... my own polyneuropathy (granted, it's not an exact match, but mine is linked to SLE, and Sjögren's and lupus are basically cousins) cleared up once I was on Medrol. Of course, they aren't identical, and since we still have to figure out the root cause, this is just me thinking out loud...

Harold Reed4
Reach out if you're still hanging around. I know of this one straightforward test—heard it’s pretty reliable—to help figure out if you're actually dealing with Small fiber Neuropathy or not.