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.

@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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I am a 64 year old female with a history of Diabetes, Hypertension and RA, all of which are under control. For about a week now, I have developed an unbearable burning sensation in both of my legs especially my left leg. It feels like I have my feet over a hot stove. the feet are warm to the touch nut the heat I feel emanating from the legs feels like 120 degrees. i can also feel like a pressure on the legs. Blood clot has been ruled out. What can I do to get some relief?

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@eugenia007 I have small fiber peripheral neuropathy in both of my feet and the "burn" a lot. My pain medication helps but when it isn't working I wear socks soaked in cold water and let a fan blow on my socks. That gives me instant relief. I also have venous insufficiency where blood sometimes pools in my lower legs. I wear compression socks for that when I'm unable to elevate my feet. Hopefully a doctor can figure out what is wrong with your feet. Unfortunately, there are lots of possibilities for "hot" feet.

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

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@eugenia007

I am a 64 year old female with a history of Diabetes, Hypertension and RA, all of which are under control. For about a week now, I have developed an unbearable burning sensation in both of my legs especially my left leg. It feels like I have my feet over a hot stove. the feet are warm to the touch nut the heat I feel emanating from the legs feels like 120 degrees. i can also feel like a pressure on the legs. Blood clot has been ruled out. What can I do to get some relief?

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@eugenia007 I have had burning pain, starting in the balls of my feet, but by now, the pain is up to mid-calf. A neurologist gave me the diagnosis of peripheral polyneuropathy in 2013. Before the pain started I had numbness and tingling in my feet and legs.

As far as finding a treatment for the pain, every person is unique. What helps me could give you bad side effects.

Have you met with a neurologist? What you're experiencing could be neurological, but you wouldn't know for sure until some tests are done.

I had a Burst DR spinal cord stimulator implant in June of 2017, which gave me 75-80% pain relief. It was amazing, after having lived with increasing pain. I tried a bunch of medications, but nothing helped, and some had unacceptable side effects. I finally started taking morphine sulfate contin, and it takes the edge off the pain. I've been taking it for around 5 years now. It's a medication that offers pain relief when nothing else does.

There are lots of people here at Connect who have found things that help. All 5 of my siblings took Gabapentin, but it didn't do anything for me. Have you found anything that reduces the burning pain in your legs? Are you taking any pain medication?

Diabetic Neuropathy is the most common form of neuropathy, but there are other causes, and for some, no cause can be found. I haven't ever experienced anything that could cause neuropathy, except for a test that saw genetic markings for it.

Have you spoken to a doctor about the burning? Your primary care doctor may refer you to a neurologist, though you might have to ask for a referral. I hope you find answers soon.

Jim

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