What helps the symptoms of Small Fiber Neuropathy?

Posted by margie1234 @margie1234, Dec 12, 2021

Good morning
I know most members here have more severe symtoms than I.
I woke up one morning in august with both feet tingling and with a sandy like feeling under my toes and bottom of both feet. I had no previous warning. My family doctor said that is strange maybe it will fo away on its own?? I had a short assessment with a poditrist which cost me $95 dollars and he said I had beginnings of small fiber neuraphy buy cushioned insoles and come back if it gets worse. To see a neurolagist here is 3 year wait and I have no coverage I am at my wits end on what to do for this. I thought only diabitics got this. My anxiety level is off the wall. I have researched on line and do stretches and walk. Any advice on what to do to possibly stop the tingling would be so much appreciated. Margie

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@johnbishop

Just an FYI...."Is small fiber neuropathy the same as peripheral neuropathy? -- Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain." --
Small fiber neuropathy: MedlinePlus Genetics: https://medlineplus.gov/genetics/condition/small-fiber-neuropathy/

You are correct, the skin punch biopsy is the gold standard for diagnosing small fiber neuropathy but sometimes it takes a village approach. My neurologist could have done a punch biopsy but I'm quite happy with the diagnosis. May not be a big deal but if I have nerve damage why would I want to have a punch biopys which by definition is going to remove some good nerves along with some damaged ones to see how bad it is. Just my thoughts.

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A skin punch biopsy is not gong to remove your nerve. It takes a sample of you skill a few mm deep to examine the nerves. It takes about 15 minutes and the punch is about the small of pencil eraser. It will confirm that you have SFN if all other tests are coming out negative. It may still be idiopathic. I had it done and it was a simple procedure that confirmed having SFN.

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@virginiashort

Yes, mine was diagnosed with a skin biopsy

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mine was diagnosed with no skin biopsy. I have tingling in both feet. the podotrist used a 2 sided needle thing to see what I felt or didn't feel with my eyes closed . ran some kind of probe down my leg to see how my
ciculation was which came out ok

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@kelsey1234

A skin punch biopsy is not gong to remove your nerve. It takes a sample of you skill a few mm deep to examine the nerves. It takes about 15 minutes and the punch is about the small of pencil eraser. It will confirm that you have SFN if all other tests are coming out negative. It may still be idiopathic. I had it done and it was a simple procedure that confirmed having SFN.

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Actually the skin punch biopsy does remove some small fiber peripheral nerves along with the epidural layers - "...Some of the available tools for testing have included the neuropathic pain inventory, quantitative sensory testing (QST), quantitative sudomotor axon reflex testing (QSART), electromyography, and nerve conduction studies. Additionally, another diagnostic technique that has recently become widely and commercially available is the skin punch biopsy, which is used to measure epidermal nerve fiber density (ENFD) ..." --- Routine use of punch biopsy to diagnose small fiber neuropathy in fibromyalgia patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/.

Details of counting the small nerve fiber density from the same article -- "...To fill in the void of objective diagnostics for SFN, the skin bunch biopsy technique was developed at the Karolinska Institute and later standardized at the University of Minnesota and at Johns Hopkins University. These punch biopsies began to be included in the diagnostic workup of patients with suspected SFN after the identification of antibodies against protein gene product 9.5 (PGP 9.5). PGP 9.5 is a neuronal form of ubiquitin carboxyl-terminal hydrolase transported with the slow component of the axonal transport. The availability of this antibody enabled visualization of the extensive innervation of the epidermis [5, 14] and the capacity for quantitation of epidermal innervation by small fibers [9]. This skin biopsy test was so specialized, however, that it remained solely in research hands for many years. It requires skilled and highly trained pathologists to process the sample and perform the very detailed task of manually counting the nerve fibers. It has, however, recently become commercially available at many academic centers and a few specialized labs in the USA. Each lab has its own established cutoff values for ENFD (lab norms), which allow the practitioners to make a diagnosis of SFN with greater certainty [15]. The convenience and ease of modern day shipping methods have made this test readily available to clinicians all over the country...."

Even though it's only the size of a pencil eraser, my symptoms along with my physical exam and nerve conduction tests are enough for me. Why? Because I know even with the results of the skin punch biopsy, it's not going to tell me what caused my idiopathic SFPN. The only thing it's going to do is remove a few more of my small fiber nerves that are good for the sake of measuring the epidermal nerve fiber density.

It might be different if I didn't already have a diagnosis and I was still trying to find out why I'm having these numbness symptoms. Then I might be OK with having the neurologist order a skin punch biopsy if it would provide a diagnosis.

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Margie,It took me a long time to get into a neurologist. I had 3 tests…One for long fiber..which turned out negative. Then the biopsy for short fiber…which was positive.No numbness….just that sand feeling you describe…then 🔥 burning in my feet and legs, which came on suddenly.I’m not diabetic…and I’m active. My sister has the feeling in her toes that I started with at first.
My doctor prescribed Gabapenten and Duloxetine. It’s controlling my symptoms ..not perfectly..but much better

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@jwalker12

I'm not sure how bright your neurologist is, small fiber and peripheral neuropathy are different diseases. Small fiber neuropathy is diagnosed by a skin biopsy. I have read of several patients and neurologists with the same confusion, the latter diagnosing sfn with a eeg.

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Wow, this neurologist stated it as fact: "EEG identifies sfn". End of story. Go see a rheumatologist.

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If you have small fiber neuropathy diabetes has nothing to do with it. I have it as well and I am not diabetic. I have the tingling in my fingers and toes and it has never gone away neither has the intense burning in my legs. I take Gaberpentin but I am in the process of switching to Lamotrigine. It’s a long process but my neurologist thinks it will manage my pain better. I have had many tests including genetic testing and they can’t find the source. While I have small fiber neuropathy, I have the autonomic type which affects the autonomic nervous system which affects normal everyday functions that we have no control over, ie, bladder, digestion, bowels, breathing.

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@johnbishop

Just an FYI...."Is small fiber neuropathy the same as peripheral neuropathy? -- Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain." --
Small fiber neuropathy: MedlinePlus Genetics: https://medlineplus.gov/genetics/condition/small-fiber-neuropathy/

You are correct, the skin punch biopsy is the gold standard for diagnosing small fiber neuropathy but sometimes it takes a village approach. My neurologist could have done a punch biopsy but I'm quite happy with the diagnosis. May not be a big deal but if I have nerve damage why would I want to have a punch biopys which by definition is going to remove some good nerves along with some damaged ones to see how bad it is. Just my thoughts.

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That is simply incorrect. Peripheral Neuropathy (PN) by definition is a disease of the periphery, i.e. the hands and feet. Small Fiber Neuropathy (SFN), in which only the small sensory cutaneous nerves are affected, can affect the entire body (and bodily functions one would not readily associate with neuropathy). Therefore, one could simply have PN, or conversely, SFN that is only affecting the periphery (where symptoms often begin). However without a biopsy, one cannot be sure which disease they have. If the symptoms remain in the hands and feet, a lack of confirmation is not a problem, as one would most likely treat and deal with the pain in the same manner. If the problems progress beyond the periphery, one is in a more difficult situation. Many of the full body debilitating symptoms (detailed below) of SFN mirror those of other serious diseases and without a biopsy, one could only assume they were a product of the SFN. The state of not knowing can create extreme anxiety. I have a confirmed case of SFN and still get extreme states of anxiety when a new pain or condition arises. However, even in many medical journals, the medical community often refers to the disease as one of the hands and feet, regardless if this is merely out ignorance or hubris. When Swedish did my biopsy, they sent it to a neuropathology company called Therapath for analysis. Their information on SFN (copied below) best describes the disease. One cannot read the following and think PN and SFN are even close to the same disease…

Therapath: Symptoms of sensory small fiber neuropathy include numbness, hypersensitivity, and spontaneous painful or annoying sensations called paresthesias. The latter can present as tingling, burning, freezing, stinging, stabbing, itching, squeezing, tearing, buzzing, aching, or electric sensations that fluctuate in severity. These sensations can occur anywhere in the body, including the feet, arms, legs, torso, scalp, face, or even the mouth.

Symptoms of autonomic small fiber neuropathy include abnormal sweating or temperature regulation, lightheadedness or fainting when standing up from hypotension or tachycardia, gastroparesis with bloating and constipation or diarrhea, incomplete bladder emptying or difficulty initiating a stream, sexual dysfunction from hypo or hypersensitivity, dryness and thinning of the skin, hair loss in the legs, and ridged or brittle nails.

Patients with rheumatological disorders can present with a variety of syndromes that can result from Small Fiber Neuropathy (SFN). These include musculoskeletal pain, muscle cramps, fasciculations, widespread unexplained pain, reflex sympathetic dystrophy/complex regional pain syndrome, burning paresthesias, and autonomic instability including orthostatic hypotension, postural tachycardia, or gastrointestinal dysmotility.

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@total99

Wow, this neurologist stated it as fact: "EEG identifies sfn". End of story. Go see a rheumatologist.

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An EEG/NCS (nerve conduction study, usually done along with the EEG), can differentiate between large and small fiber peripheral neuropathy. With the usual symptoms, that is often enough to make the diagnosis of small fiber PN. Many patients do not get the biopsy for that reason, so your neurologist is probably correct.
I have small fiber PN, and I had the nerve biopsy because I insisted on it, because I wanted to know "for sure". It was positive, but has made no difference in my treatment, so it was unnecessary from a medical point of view.
BTW, the test is very expensive, and only available from a few labs. It may be that your insurance will not pay for it.
As everybody on this forum knows, this is a weird and frustrating disease. Hang in there, and don't get angry. It won't help.

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@jwalker12

That is simply incorrect. Peripheral Neuropathy (PN) by definition is a disease of the periphery, i.e. the hands and feet. Small Fiber Neuropathy (SFN), in which only the small sensory cutaneous nerves are affected, can affect the entire body (and bodily functions one would not readily associate with neuropathy). Therefore, one could simply have PN, or conversely, SFN that is only affecting the periphery (where symptoms often begin). However without a biopsy, one cannot be sure which disease they have. If the symptoms remain in the hands and feet, a lack of confirmation is not a problem, as one would most likely treat and deal with the pain in the same manner. If the problems progress beyond the periphery, one is in a more difficult situation. Many of the full body debilitating symptoms (detailed below) of SFN mirror those of other serious diseases and without a biopsy, one could only assume they were a product of the SFN. The state of not knowing can create extreme anxiety. I have a confirmed case of SFN and still get extreme states of anxiety when a new pain or condition arises. However, even in many medical journals, the medical community often refers to the disease as one of the hands and feet, regardless if this is merely out ignorance or hubris. When Swedish did my biopsy, they sent it to a neuropathology company called Therapath for analysis. Their information on SFN (copied below) best describes the disease. One cannot read the following and think PN and SFN are even close to the same disease…

Therapath: Symptoms of sensory small fiber neuropathy include numbness, hypersensitivity, and spontaneous painful or annoying sensations called paresthesias. The latter can present as tingling, burning, freezing, stinging, stabbing, itching, squeezing, tearing, buzzing, aching, or electric sensations that fluctuate in severity. These sensations can occur anywhere in the body, including the feet, arms, legs, torso, scalp, face, or even the mouth.

Symptoms of autonomic small fiber neuropathy include abnormal sweating or temperature regulation, lightheadedness or fainting when standing up from hypotension or tachycardia, gastroparesis with bloating and constipation or diarrhea, incomplete bladder emptying or difficulty initiating a stream, sexual dysfunction from hypo or hypersensitivity, dryness and thinning of the skin, hair loss in the legs, and ridged or brittle nails.

Patients with rheumatological disorders can present with a variety of syndromes that can result from Small Fiber Neuropathy (SFN). These include musculoskeletal pain, muscle cramps, fasciculations, widespread unexplained pain, reflex sympathetic dystrophy/complex regional pain syndrome, burning paresthesias, and autonomic instability including orthostatic hypotension, postural tachycardia, or gastrointestinal dysmotility.

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What's your point? Counting the nerves in a small section of a layer of skin to determine the nerve density determines the cause all by itself without other tests, exams, history, symptoms, etc. It is just another test to confirm you have SFN. SFN, SFPN, etc. are damaged or compressed small fiber nerves which out at the end of circuit is a small fiber peripheral nerve. The only thing important to me is if a specific cause can be identified by a skin punch biopsy.

It's not worth your time arguing with me as I'm not a medical doctor, have no medical training but I have read extensively about nerve damage and possible fixes. You are free to believe what you like and I respect you for that.
My belief is that there are no drugs that can fix nerves. They only address the symptoms and they do that mostly in the brain. The only hope I've seen is the possibility of stem cell therapy that is not really proven that it works yet for nerve regeneration in humans. The other is to provide the body what it needs through cellular nutrition to feed the nerves nutritionally and hope they will heal.

I would welcome and appreciate it if you want to provide some links to reliable medical information that I need to do some rethinking.

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@jeffrapp

An EEG/NCS (nerve conduction study, usually done along with the EEG), can differentiate between large and small fiber peripheral neuropathy. With the usual symptoms, that is often enough to make the diagnosis of small fiber PN. Many patients do not get the biopsy for that reason, so your neurologist is probably correct.
I have small fiber PN, and I had the nerve biopsy because I insisted on it, because I wanted to know "for sure". It was positive, but has made no difference in my treatment, so it was unnecessary from a medical point of view.
BTW, the test is very expensive, and only available from a few labs. It may be that your insurance will not pay for it.
As everybody on this forum knows, this is a weird and frustrating disease. Hang in there, and don't get angry. It won't help.

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BTW, we both misspoke. The test referred to is an EMG (electromyelogram), not EEG. Sorry foir the confusion.

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