Small Fiber Neuropathy: What helps?

Hi Dan @jhoops, welcome to Mayo Clinic Connect. Thank you for sharing. It definitely helps when we know we are not alone. I have idiopathic small fiber PN for over 20+ years and only bothered to get a diagnosis a couple of years ago. I am fortunate that I only have the numbness in my feet and a little above the ankles but do not have any pain.

Have you found any treatment that helps you? I don't have to take any medications because they don't have any to address numbness. If you see a post by a member and want to ask them a question just type their @membername and they will receive and email notification.

John

Hi, John. Like John, I have had PN also for over 20 years. My symptoms have always included tingling and pain..It started in my right foot and then my left and now my hands. But it has been a fairly slow progression. I have had severe problems with my bladder and in the last two years my bowels. They have always called it neurogenic bladder and said there was nothing to help me surgically. For a long time, drugs like Detrol, oxybutynin worked quite well. But in recent years the problem has worsened. My current research indicates that PN can also affect the autonomic system and particularly mentioned was the bladder. I will discuss it with my neurologist and post what I find out. If you learn anything more about this, I would love to hear about it.

Peggy

Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines lyrica cymbalta gabetin amptrypilline nothing has calmed the burning pain. I have burning pain on my triceps and entire back into my buttocks area and a band of numbness below my chest Around the upper area of my stomach which makes it difficult to breathe and eat. I was vitamin b deficient even though my numbers read high and my blood sugars where out of control. I have lowered my ac1 to 7.5 and have been receiving vitamin b-12 methlycoloban shots. Has anyone ever experienced the burning sensations on there backs and the band of numbness. I only read about hands and feet and nothing else.

Hello @rgolia13, welcome to Mayo Clinic Connect. There is currently another active discussion for small fiber neuropathy where your post may receive more visibility and you can meet other members talking about small fiber neuropathy. I'm tagging @lisalucier to see if she can move your discussion so more members will see it.

Groups > Neuropathy > Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

It's good that you have lowered your A1C. Has your doctor or neurologist offered any treatment suggestions?

Hi @rgolia13
I've severe burning of hands/ feet. It also can be anywhere on my legs, toro, arms (in small area's) at different times.
I can not tolerate any of the mentioned medications.
I do get significant relief from medical marijuana oil and vape.
It does not make me "high" unless I take and do not eat. Ie: breakfast.
I had to try several brands. The oil and vape are from medical marijuana supplier, not over counter or online products.
I still get flair ups that usually last about 3~4 days. When that happens, I continue my dosing and use ice packs. It has disabled me from working.
Still worth the relief. But I do get pretty regular burning on legs,arms and torso. Usually short lasting as my hands/ feet/lips are daily.
Hope this helps.

@clairecas Good morning. Thank you for the “introduction” to your journey into the small fiber neuropathy world. We share the same commitment to medical marijuana for pain control. I appreciate your warning about not medicating on an empty tummy. Please tell us more about the flares. Do you know what triggers them? Do you notice that symptoms are stronger with low barametric pressure? And finally, what dosages are you using for tinctures? 2:1? Have you tried a 3:1 or other dosage balm for your hands? Oops, one more question. What do you use to combat the “burning “, especially in the torso? Does it interrupt your sleep? Be safe, be free of pain even if it is for just an hour? Chris

I have tried the medical marijuana it intensifies my numbness no relief from the burning. I’m now in the fourth treatment of PEMF therapy and have been on a vitamin and supplement regimen for about a month. My neurologist and Dr latov of Cornell medicine put me on the treatment with lyrica gabetin cymbalta I was on 1800 MG of gabetin that did nothing. I was on 600 MG of lyrica that did nothing and 30 MG of cymbalta and 35 MG of amptrypilline and nothing has calmed the burning pain. I just started tramodol which has helped take the edge off a little. I have had mri of my brain neck back and yesterday I had one of my lower lumbar done.

The only medication that gave me total relief for a short period of time is prednisone and I’ve only done it once given all the negative side effects. For anyone reading this - be careful with gabapentin. I was on it for a year and it only provided limited relief and as time went by, it worked less and I have to take more. It’s VERY difficult to get off those drugs - they are addictive. I went cold turkey and that was not fun. I’ve tried every med you listed. I am choosing to live with the daily pain (marijuana had the same effect for me as you). I have SNF and something else yet to be diagnosed. I also have lesions on my lower spine. 4 years before they did a skin punch test while symptoms got worse and worse. What an awful journey!

Hi Chris,
That's a lot of questions early in the day : )
First, I have not figured out what triggers me. It comes on quickly or wakes me at night.
I shift around to get away from any burning in my torso/ arms/legs. I don't have better relief methods right now. The burning (not H&F)is more tolerable if i'm preoccupied. When my hands & feet are really flaired, I can do nothing. I will usually increase my oil which is 6:1 to add another dose. That gives some help.
The vape I use is 1:1, I use as needed.
I did not notice a diff w pressure, though I do get severe migraines strongly influenced by the weather.
Lastly, I purchased a salve suggested by John B from CBDNANOMEDS.com.
It works for short periods of relief w flairs. I will put on at night if wake up irritated enough.
I hope this helps.

I was on prednisone 40mg and it did nothing for me. I’m going crazy to get some relief of the burning sensations and numbness around my upper stomach.