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Small Fiber Neuropathy: What helps?

Neuropathy | Last Active: May 17 2:03pm | Replies (284)

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@rgolia13

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.

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Replies to "Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines..."

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.

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!

Hello! Such helpful discussions. I am 57 and have been suffering w idiopathic SFN for almost 3 years. I am trying to manage with healthy lifestyle and such... Wondering...has anyone had success with microdosing w THC??? I have heard it can help symptoms. Possibly a better alternative to Gabapentin....

thank you for reaching out! suffering with SFN can be such a lonely journey. my husband found it, and suggested i join. i am not sure what he was searching for - likely he just googled Small Fiber Neuropathy.

I have a question. I have Small Fiber Neuropathy in my left foot spreading up left leg. The burning pain is horrible but i recently started physical therapy for kneecap slipping and spur. My pain has increased severly! I cant sleep. Does PT make SNF worse? My friend is a PT Professor and helped me with nerves flossing. Will I improve with time?

Trish

Thank you for your response Chris! Like you, I do not like the idea of wasting the day zoning out! So I save my THC:CBD for night, but have heard small dosing during the day can help without the grogginess. I will try the topical from P & B for sure. Thank you for the suggestion. Yes, I often wake up during the night with achiness in my legs mainly. Life style wise, I used to exercise a lot. Now mainly walks, and I find yoga stretching really helps temporarily. Thank you for your tips!