Non-Length Dependent Small Fiber Neuropathy

Anybody in here with this diagnosis? I’ve been living it for over 11 years. It’s pretty much wrecked me. The neurologist that diagnosed me told me on that first day “This is probably not gonna kill you, but it’s gonna make you miserable. You need to go find a good pain clinic.” He was totally correct. I have tried everything that can be tried to help. No help. It’s only by the grace of God that I haven’t killed myself.

Hello @jemock. Nerve pain is undoubtedly trying, as you well know, given that many pain medications don't even address it.

Before I go on, you will notice that I have moved your post into an existing discussion on this same topic, which you can find here:
- Non-Length Dependent Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/non-length-dependent-small-fiber-neuropathy/

Did you ever try care from a pain clinic?

Thank you for that. Yes, I’ve been working faithfully withy pain clinic, did IVIG, plasma-pheresis, biologics, acupuncture, marijuana, spinal stimulator, and more different kinds of drugs than I can remember.

Hey friend, yea, I’ve been deep into it for 11years. It affects my eyes, ears, nose, has ruined my teeth, burning from head to toe, joint pain, stinging, aching all over, fatigue, autonomic problems like blood pressure, gastroparesis and on and on. I’ve tried plasma-pheresis, biologics, marijuana, acupuncture, spinal-stimulator, and about every drug that can be thrown at it. I’m always in a state of misery. You definitely learn some coping mechanisms and give up a lot of dreams.

I know your post is old, but you describe some things VERY similar to mine - I’m trying to locate a physician to conduct the biopsy test for SFN & believe it’s definitely in the Non-Length Dependent SFN realm caused by AI diseases. Ruled out MS & others w/ MRI’s/CT’s/X-rays but along with your left side face tingle and the right cheekbone/ear situation you mention, my neurological symptoms are a daily battle. I’m only 41 yrs old and would love any knowledge you have learned in your journey!

I hear you, I’m 53 years old and can’t imagine living with this rest of my life. But some days are good and some bad. I live in NYC and all of the neurologists I have seen (five!) administer the skin biopsy test.
I have been trying too figure out if there is any pattern to what sets off the pain and where I get the pain. On my third year of this, I have yet to find a pattern. I do notice that pain lessens when I exercise and generally move around. I also use an ice pack (especially helps when the pain is on the face). Advil in addition to the gabapentin and duloxetine helps but I try not to take it too often. I am now trying Chinese herbal medicine. At this point I have nothing to lose. Will report back if it helps. We should all help each other out and share anything that works. Hang in there.

Howdy, I started into it 12 years ago. It’s blossomed into the full-blown deal now. Affects me all over the body, has ruined my teeth, ringing ears, burning eyes, gastroparesis, blood pressure, crazy pain 24/7. I tried and done everything, I do believe, but to no avail. Tough stuff.

Absolutely! I’m on an array of meds already 👎🏼 which mostly were to address the Mixed Connective Tissue Disease I was diagnosed with last year . It was great to find a name to my misery, but it didn’t really explain all the add’l symptoms I was displaying. The doctors have all mentioned Sjogren’s Syndrome in their visit summaries as well. I have had MRI/CT/X-ray on hands, wrists, cervical spine, head & neck, brain, etc. No arthritis for me either and the odd thing is that all bloodwork has normalized and there never has been any “inflammation” markers - how can so many joints be inflamed, but no inflammation present?! Cervical Stenosis diagnosed, but they said it’s minor and not producing enough impact to create visible symptoms, yet my neck and shoulders are sore every-single-day! Nerve conduction study showed normal, which is why we’re now onto the SFN testing if I can find a place. My dizziness/balance/heavy bobble head feeling hasn’t shown a source for the cause & I even pushed on my own to get a VNG test done just this week - all normal. So ears aren’t causing these neurological symptoms either.

I’m confused on the SFN biopsy. My symptoms are all in my upper body & face for the most part. Why would she order the biopsy be done in my ankle/thigh? The lab I found to process the sample is full of very helpful info & they note other areas (in the upper body) that biopsy can be taken. So, should I ask the neuro to re-do the referral so we can ensure accurate location & results?

Stay well & keep pushin’ on~

Let me know if it works. I’m in constant pain.

The same here, with the teeth, ringing ears, watery burning eyes, blood pressure. Pulse rate. I ended up getting a pacemaker because the autonomic neuropathy is killing the nerves in the top part of my heart. I’m on hospice for the autonomic neuropathy and have been told there no longer is anything they can do but make me comfortable until I die. I’m sorta depressed but then again I’m happy I won’t have to suffer any longer. This horse rap disease is the gift that keeps on giving. If it’s not one thing, it’s another. Constant unrelenting pain. Like out of your mind pain. So I actually welcome death. I just cannot take this torture for another 15 years. And it is just like torture.
Funny how none of the actors or sports figures are advocates helping with neuropathy and with research. Wait until they get it or the President get it then there will be funding to help us all out. Just my opinion.
I hope all my small fiber sensory neuropathy and autonomic neuropathy friends get a decent sleep. That way tomorrows battle may not be as bad.