1. < Neuropathy

Small Fiber Neuropathy burning?

Posted by katec @katec, Mar 22, 2020

Hi everyone! I hope you’re all doing well with the quarantine. We are hanging in there!!

I have a question about small fiber neuropathy. As you know, my 15 year old son has it. His only symptom so far (4 years now) has been severe pain on the bottoms of both of his feet. Today he’s complaining of a burning sensation when his shorts touch a certain place on his thigh. I know SFN is sometimes called the burning syndrome, but I thought it was more of a widespread type of burning, not just a small spot (size of an iPhone). Have any of you experienced this before? Just the patchy burning? Thanks so much!!

Interested in more discussions like this? Go to the Neuropathy Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | May 23, 2020
In reply to @cshallow "Acupuncture helped me the most but you need to find the right one. Prayers for your..." + (show)
@cshallow

Acupuncture helped me the most but you need to find the right one. Prayers for your son.

Jump to this post

Hello @cshallow, I see that you've been a member for awhile but this is your first post. Welcome to Connect and most of all thank you for sharing your experience with acupuncture. Have you also been diagnosed with small fiber neuropathy?

REPLY
patsydell | @patsydell | Dec 8, 2022

Does anyone have nerve pain and have found anything that helps whether it be natural or prescription. I have nerve damage in my feet in my hand. It drives me crazy the pain is so terrific especially in my hand. I numbness with burning pain. I am allergic to gabapentin.

REPLY
5 replies
pacer3702 | @pacer3702 | Dec 9, 2022
In reply to @patsydell "Does anyone have nerve pain and have found anything that helps whether it be natural or..." + (show)
@patsydell

Does anyone have nerve pain and have found anything that helps whether it be natural or prescription. I have nerve damage in my feet in my hand. It drives me crazy the pain is so terrific especially in my hand. I numbness with burning pain. I am allergic to gabapentin.

Jump to this post

5% Lidocaine patches have been life changing for me in controlling the nerve pain in my feet at night. Like you, I don't tolerate gabapentin. I no longer need the patches because, 19 months post-Covid vaccine, I am largely recovered from the resulting sensory and motor peripheral neuropathy.

REPLY
1 reply
mb63 | @mb63 | Dec 9, 2022
In reply to @patsydell "Does anyone have nerve pain and have found anything that helps whether it be natural or..." + (show)
@patsydell

Does anyone have nerve pain and have found anything that helps whether it be natural or prescription. I have nerve damage in my feet in my hand. It drives me crazy the pain is so terrific especially in my hand. I numbness with burning pain. I am allergic to gabapentin.

Jump to this post

Pregabalin really helped me. Not sure if its in the same family of drugs or not, but gabapentin didn't help me.

REPLY
patsydell | @patsydell | Dec 9, 2022
In reply to @pacer3702 "5% Lidocaine patches have been life changing for me in controlling the nerve pain in my..." + (show)
@pacer3702

5% Lidocaine patches have been life changing for me in controlling the nerve pain in my feet at night. Like you, I don't tolerate gabapentin. I no longer need the patches because, 19 months post-Covid vaccine, I am largely recovered from the resulting sensory and motor peripheral neuropathy.

Jump to this post

I tried the lidocaine patch that I had for a couple years and it may have not been any good because it didn’t do anything at all. I will purchase some more and try it
And see if it helps at all. I’m very happy for you that you no longer have neuropathy. That sounds like a miracle to me!

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Moderator
Amanda Roe | @amandajro | Dec 10, 2022
In reply to @patsydell "Does anyone have nerve pain and have found anything that helps whether it be natural or..." + (show)
@patsydell

Does anyone have nerve pain and have found anything that helps whether it be natural or prescription. I have nerve damage in my feet in my hand. It drives me crazy the pain is so terrific especially in my hand. I numbness with burning pain. I am allergic to gabapentin.

Jump to this post

Hello @pastydell. Because of your nerve pain and burning symptom, I thought you'd benefit from me moving your post into a discussion where other members are discussing small fiber neuropathy and burning. You can find your post here:
- Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/

I see @pacer3702 and @mb63 have both come in to share what is helping them. I'd also like to welcome in @lioness who may be able to share more of her experience with you as well.

What have you been using?

REPLY
1 reply
julbpat | @julbpat | Dec 11, 2022
In reply to @patsydell "Does anyone have nerve pain and have found anything that helps whether it be natural or..." + (show)
@patsydell

Does anyone have nerve pain and have found anything that helps whether it be natural or prescription. I have nerve damage in my feet in my hand. It drives me crazy the pain is so terrific especially in my hand. I numbness with burning pain. I am allergic to gabapentin.

Jump to this post

You might be able to take tegretol, which has been miraculous for me. I take 400mg each morning and evening.

REPLY
2 replies
deluga | @deluga | Dec 11, 2022
In reply to @jeffrapp "I have idiopathic small fiber PN, affecting both feet, legs up to my groin, and a..." + (show)
@jeffrapp

I have idiopathic small fiber PN, affecting both feet, legs up to my groin, and a little in my hands.
Most of my symptoms are severe burning when my skin senses a pressure, such as wearing shoes or even socks.
I have, like almost all of you, tried numerous medications, alternative treatments, devices, supplements, etc. Nothing seemed to work much, or at all. In fact, because I developed swelling in my legs (a fairly common adverse reaction to Lyrica), I have started to cut down on that, without any noticeable change in my pain level. the swelling has gotten somewhat better.
Lately, I think I feel a little better.
I noticed that when my feet were burning, I developed a red color to my skin that was actually hot to the touch. For example, I still ride my bike, and wear bike shoes without socks. The redness, etc. developed exactly in the area of my feet that was touched by my shoes.
I think I may have a form of erythromelalgia, although my neurologist doesn't seems totally convinced. I found some papers where the authors tried using a topical cream of various concentrations of ketamine and amitriptyline.
My doc wrote a prescription for ketamine 5% and amitrriptyline 5%. It has to be made by a compounding pharmacy and is very expensive.
Yesterday, I rode my bike for 4 hours without much burning. Previously, I couldn't even do that for 1 hour, so, so far, so good.
I hope this isn't another example of my imagination, or a coincidence, etc., causing me to come to the wrong conclusion (I'm sure that has happened to many of you)
Does anyone else have experience with this topical?

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Don't know if this is any help. I take ALA for my SFN which helps tremendously. But at times my feet would still burn, when wearing socks. I only wear socks that are mainly merino wool. Noticed that they only burn when I wear cheap pairs of merino socks. When I use good brands such as Darn Tough (if want strength) and Smartwool (if want warmth), they do not burn. I got seduced recently by the great ads and designs of Bombas merino socks. Again my feet burned in them and I always launder socks before wearing them. Back to the other brands.

REPLY
patsydell | @patsydell | Dec 11, 2022
In reply to @amandajro "Hello @pastydell. Because of your nerve pain and burning symptom, I thought you'd benefit from me..." + (show)
@amandajro

Hello @pastydell. Because of your nerve pain and burning symptom, I thought you'd benefit from me moving your post into a discussion where other members are discussing small fiber neuropathy and burning. You can find your post here:
- Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/

I see @pacer3702 and @mb63 have both come in to share what is helping them. I'd also like to welcome in @lioness who may be able to share more of her experience with you as well.

What have you been using?

Jump to this post

Thank you ☺️

REPLY
patsydell | @patsydell | Dec 11, 2022

I tried gabapentin and I can’t use it as I’m allergic to it. Pretty much gets up I tried another prescription drug but I can’t even remember the name and that didn’t help at all.

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