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!!

@ilovedoodie

I apologize. I did not read your whole post, but stopped at "punch biopsy". What the heck is that? I've never heard of it. I usually would talk to Mr. Google, but I'm spending too much time on here, lol. Also, I have wondered about the causes of my chronic pain. I do have some degenerative disk/nerve issues–cervical–before injections into the optical lobes of my brain, I often felt like the back of my head was going to explode. I have osteoarthritis here and there, but nothing that explains my chronic allover pain. Sometimes I feel like it would hurt if someone touched my skin, like when you have a high fever, and others my back feels like it is on fire, seriously on fire, but when a doc pushes on it no increased pain. OK, I did just read your entire post. I have never tried or been suggested to try the CBD/THC route. Guess I am still somewhat skeptical.

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@ilovedoodie

CBD and the other related products aren't for everyone, but lots of people sing their praises. A punch biopsy is, in my limited knowledge, an extraction of muscle or nerve or skin that is analyzed to give a diagnosis. It's not as scary as it sounds.

Jim

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@jimhd

@ilovedoodie

CBD and the other related products aren't for everyone, but lots of people sing their praises. A punch biopsy is, in my limited knowledge, an extraction of muscle or nerve or skin that is analyzed to give a diagnosis. It's not as scary as it sounds.

Jim

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It does sound scary! Thanks for the response.

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@ilovedoodie

Most of the tests are no big deal, except for one I had at the neurospecialist. He stuck a large needle into the muscle of my leg, in 4 places starting at my hip and ending with the top of my foot next to my toes. After the needle went in, I had to flex that muscle. Now that one was painful. Except for the one in my foot – because of the numbness from neuropathy I didn't feel it at all. The fact that I had no sensation was the scary part. I'm not diabetic, but my father was, and he had to be really careful with his feet for that reason. I never walk without solid sole shoes bc I'm afraid that I'll step on something and not know it.

Stay safe and stay home.

Jim

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@jimhd

@ilovedoodie

Most of the tests are no big deal, except for one I had at the neurospecialist. He stuck a large needle into the muscle of my leg, in 4 places starting at my hip and ending with the top of my foot next to my toes. After the needle went in, I had to flex that muscle. Now that one was painful. Except for the one in my foot – because of the numbness from neuropathy I didn't feel it at all. The fact that I had no sensation was the scary part. I'm not diabetic, but my father was, and he had to be really careful with his feet for that reason. I never walk without solid sole shoes bc I'm afraid that I'll step on something and not know it.

Stay safe and stay home.

Jim

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I know a man who lost feeling in both feet, just randomly, no apparent cause. He can no longer drive or operate anything that requires feeling in feet. His wife is constantly with him when they go out. On a separate note, I was experiencing neuropathy in my left hand that my PC assumed was due to my diabetes. I had a cervical MRI due to severe pain in the back of my head like it was actually going to blow up. PC referred me to an awesome pain doc who is very knowledgeable regarding which nerves and areas of the spine cause symptoms in various areas of the body. The injections he has been providing in the occipital lobe of my brain (not so fun) due to the above issues have completely removed the neuropathy in my left hand which I also mentioned to him. Unfortunately, not all doctors are created equal, and often the specialist field you are referred to is not the one that ends up helping. Frustrating, huh?

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@ilovedoodie

I know a man who lost feeling in both feet, just randomly, no apparent cause. He can no longer drive or operate anything that requires feeling in feet. His wife is constantly with him when they go out. On a separate note, I was experiencing neuropathy in my left hand that my PC assumed was due to my diabetes. I had a cervical MRI due to severe pain in the back of my head like it was actually going to blow up. PC referred me to an awesome pain doc who is very knowledgeable regarding which nerves and areas of the spine cause symptoms in various areas of the body. The injections he has been providing in the occipital lobe of my brain (not so fun) due to the above issues have completely removed the neuropathy in my left hand which I also mentioned to him. Unfortunately, not all doctors are created equal, and often the specialist field you are referred to is not the one that ends up helping. Frustrating, huh?

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@ilovedoodie I can understand the doctor making the connection between diabetes and neuropathy. I don't know the statistics, but I gather that diabetic neuropathy is the most frequently diagnosed. Mine is idiopathic.

You're right about doctors. I've been fortunate to have several good specialists, and they all keep my PCP in the loop.

Jim

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@lioness

@lorirenee Ive been using Topricin cream it is for the burning also . It works also but I like Frankincense and Myrrh I,ll have to try it

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@lioness The topricin did not work for me, but the Frankincense does. I guess we keep trying, till we find something…Lori

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@lorirenee1

@lioness The topricin did not work for me, but the Frankincense does. I guess we keep trying, till we find something…Lori

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@lorirenee1 I just ordered the Wise Men will give it a try. Everyone is diff. The Topricin does work but am wondering and will see if the Wise men gives me a longer period of relief. Hang in there .

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Hello. This is my 1st time here and I am wondering if I may have found an answer to an old periodic problem and perhaps it relates to a new one in last 2 days. I have had the burning hypersensitive skin issue on forearms and a lot on top of thighs over decades- could not stand clothes touching it. Comes and goes, never sought help. Been a couple years since felt it. Then last year had 1 foot get a rush of heat once in awhile and off and on i get burning tongue syndrome. Doctors had no answer. My newest issue is my elbow feels not so much burning skin but as if I have a friction/rug burn inside. So I am wondering if all these are related or is this new elbow thing, which is not on outer skin, the same. I have never heard of small fiber neuropathy. I do have stenosis in my neck on opposite side of this elbow and I take gabapentin that dulls pain, though only somewhat.
Thoughts?

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@grandmaraines

Hello. This is my 1st time here and I am wondering if I may have found an answer to an old periodic problem and perhaps it relates to a new one in last 2 days. I have had the burning hypersensitive skin issue on forearms and a lot on top of thighs over decades- could not stand clothes touching it. Comes and goes, never sought help. Been a couple years since felt it. Then last year had 1 foot get a rush of heat once in awhile and off and on i get burning tongue syndrome. Doctors had no answer. My newest issue is my elbow feels not so much burning skin but as if I have a friction/rug burn inside. So I am wondering if all these are related or is this new elbow thing, which is not on outer skin, the same. I have never heard of small fiber neuropathy. I do have stenosis in my neck on opposite side of this elbow and I take gabapentin that dulls pain, though only somewhat.
Thoughts?

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Hello @grandmaraines, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy. I think it's a good thing you are asking questions and learning as much as you can. I have no medical background or training like most of us here on Connect so I can only share my personal experiences. I'm wondering if your symptoms might be associated with your stenosis?

Here's is some information that may be helpful – Cervical Spinal Stenosis – Mayo Clinic: https://www.youtube.com/watch?v=sWPB0fzX8ao I'm tagging @jenniferhunter who may be able to offer some suggestions or helpful information.

Have you tried any physical therapy or exercises for your neck?

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@johnbishop

Hello @grandmaraines, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy. I think it's a good thing you are asking questions and learning as much as you can. I have no medical background or training like most of us here on Connect so I can only share my personal experiences. I'm wondering if your symptoms might be associated with your stenosis?

Here's is some information that may be helpful – Cervical Spinal Stenosis – Mayo Clinic: https://www.youtube.com/watch?v=sWPB0fzX8ao I'm tagging @jenniferhunter who may be able to offer some suggestions or helpful information.

Have you tried any physical therapy or exercises for your neck?

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Thanks! I will check it out.
I have been to a neurologist with crays and mri- it is comoinded with arthrits. She gave me exercises. Also had 2 shots deep in neck( no effect) and have done 3 different rounds of PT. Has worsened recently , aggravated last Nov. by a fall on that side, causing lots of arm pain, but can not afford the copay to do 2-3 visits a week. I worry I may have some rotator cuff damage too as it was the 4th bad fall on that shoulder and neck. Waiting to address until after my daughter has her baby in July- not going to miss that because doc says I need surgery- I will hold that baby!
So I am going to get more dilegent with exercises and hope that helps. But I do not believe this new burn is from that as it is opposite side where I have no issues with neck.

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@grandmaraines

Hello. This is my 1st time here and I am wondering if I may have found an answer to an old periodic problem and perhaps it relates to a new one in last 2 days. I have had the burning hypersensitive skin issue on forearms and a lot on top of thighs over decades- could not stand clothes touching it. Comes and goes, never sought help. Been a couple years since felt it. Then last year had 1 foot get a rush of heat once in awhile and off and on i get burning tongue syndrome. Doctors had no answer. My newest issue is my elbow feels not so much burning skin but as if I have a friction/rug burn inside. So I am wondering if all these are related or is this new elbow thing, which is not on outer skin, the same. I have never heard of small fiber neuropathy. I do have stenosis in my neck on opposite side of this elbow and I take gabapentin that dulls pain, though only somewhat.
Thoughts?

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@grandmaraines Id like to add my Welcome to connect as others have . I have the burning pain on thighs and do have 2 back fractures the DR,S contribute it to is the impinging of the nerves to the thighs . I have neuropathy also in the shoulder neck area . It has been trial and error to see what can help . I had to cancel my apt with a neurosurgeon bec. of the covid-19 but will reschedule later . I have found that a cold washcloth cools the burning for awhile , I use Topricin cream which is for neuropathy and fibromyalgia as I have this also . When I hurt bad getting a hot shower helps. These are things I do that help but its a trial and error for this. My forearm had the burny feeling also but this all helps . One other thing for the neck arms I found is sleeping without a pillow does help it doesn't pinge the nerves. Good luck I was on gabapentin for awhile but for me it didn't help so we discontinued this . At night I do take CBD to sleep which I do . Getting a full night sleep is important .

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@grandmaraines

Hello. This is my 1st time here and I am wondering if I may have found an answer to an old periodic problem and perhaps it relates to a new one in last 2 days. I have had the burning hypersensitive skin issue on forearms and a lot on top of thighs over decades- could not stand clothes touching it. Comes and goes, never sought help. Been a couple years since felt it. Then last year had 1 foot get a rush of heat once in awhile and off and on i get burning tongue syndrome. Doctors had no answer. My newest issue is my elbow feels not so much burning skin but as if I have a friction/rug burn inside. So I am wondering if all these are related or is this new elbow thing, which is not on outer skin, the same. I have never heard of small fiber neuropathy. I do have stenosis in my neck on opposite side of this elbow and I take gabapentin that dulls pain, though only somewhat.
Thoughts?

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Hello @grandmaraines and welcome! My thoughts are…get tested. Your symptoms definitely line up with SFN. It's a simple skin biopsy that your neurologist most likely will agree to perform given your circumstances. Good luck to you.
Rachel

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