Small fiber neuropathy?

Posted by Goaway @nemo1, Feb 16 9:00pm

I never had a biopsy to dx it. I’m wondering if I have the biopsy does it make a difference in the therapies? A year ago I was dx’d with severe chronic nerve damage in lumbar and cspine: polyradiculopathy.

I have severe pain and spasms in lumbosacral back, legs and feet since 2021.

In the summer of 2023 I started (an continue having) get spasms in the trapezeous muscles on the right.

I’m currently flaring with bad pains to both shoulder that is crippling then after a long while it disappears. I developed lightning like pains to the bottoms of my feet and toes. The only thing that seemingly helps the surface pain is the lidocaine cream I apply. So far…

The neuromuscular doctor said last year no long fiber neuropathy per the nerve conduction study. She said I’d need a biopsy to determine if i have sfn.

An old nerve doctor said I had demyelination in left leg she thought secondary to diabetes. WEll, the diabetes hasnt climbed to damaging enough numbers to put me in flair much less cause the demyelination.

The foot dr last week gave referral for feet, for neuropathy and balance. So this confuses me. It all does.

I’d like to know if SNF can move around the body and cause the tingling in forarms and fingers and can the pain in SNF affect the very surface of the skin?

If someone can make sense of what Ive written I’d appreciate any help insight or feedback.

I have not received a diagnosis regarding the polyradiculopathy. I’m going to press the doctors for answers now because it’s really out of control.

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

Sort of an update. Saw pain management doctor today. Positive news.

just wanted to update. I am receiving an epidural at L4-S1. She said it would help foot pain. Not spasm. But if she call reduce or illuminate my pain at these spine levels I will be a new person with a new lease on life. She will work on upper spine after we deal with lower spine. So, I had to ask her because the nm dr told me when I asked if such a procedure she woud recommend. She said, No. Because it would affect balance. So, for a year I’ve been suffering needlessly! I’m not happy with the nm doctor!!! She said the ablation is for if the pain is not helped for long enough of a period of time. All and all and eduction.

REPLY

I'm no expert--I'm new to SFN, but I've had tingling in hands and feet and the pinprick sensations in my arms and legs just at the skin or surface level.

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@nemo1

Sort of an update. Saw pain management doctor today. Positive news.

just wanted to update. I am receiving an epidural at L4-S1. She said it would help foot pain. Not spasm. But if she call reduce or illuminate my pain at these spine levels I will be a new person with a new lease on life. She will work on upper spine after we deal with lower spine. So, I had to ask her because the nm dr told me when I asked if such a procedure she woud recommend. She said, No. Because it would affect balance. So, for a year I’ve been suffering needlessly! I’m not happy with the nm doctor!!! She said the ablation is for if the pain is not helped for long enough of a period of time. All and all and eduction.

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clarification: It was the pain management doctor who spoke about the ablation it being for if the pain is not helped for long enough of a period of time - at the end of my post.Not the other doctor.

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@ebero

I'm no expert--I'm new to SFN, but I've had tingling in hands and feet and the pinprick sensations in my arms and legs just at the skin or surface level.

Jump to this post

Hello Ebero,

Sorry for the epic.

My problem used to be limited to the lower spine. Now I have issues with upper.

I’m no expert either. Were you recently diagnosed? I’m basically “new” to coming closer to a diagnosis but since 2021 I’ve been having problems, ones whose symptoms sound like ‘neuropathy’ (SFN).

However, I had a doctor tell me I need a biopsy to diagnose it. But my podiatrist said its neuropathy.

I’ve had diabetes I thought with decent control. For a time (a few months) numbers were high, but I was able to bring those blood sugar numbers down within 3 months to under 7. I was trying to avoid going on ozempic for specific reasons.

Symptoms started I’d say, with odd sensations. Before symptoms became worsened, they were mild. Mild meaning some numbness, a throbbing or twitchy type sensations with a burning sensation to bottoms of feet. I had sensitivity to touch.

The feet felt sun burned with sand paper rubbing the skin pain. When that developed, it stayed with me. Nothing relieves it. I could not put on tight/cotton socks or shoes.

The thing that does not seem to fit is all the spasms I have been getting. Bottoms of feet, calves, upper leg stiffness/pain, back…

Since early feb, had upper body involvement which prompted near future doctor appointments to figure out what this really is. Because as I’m feeling it, I thought it was just the feet, then legs and lower back. Now it’s involving upper body more and new things have crept in.

The nerve pains and muscle spasms are unbearable. There is no escaping it, Quality of life is reduced.

Some symptoms are 24/7 others come on unexpectedly without rhyme or reason and leave like they come on but I know they will always return, When it happens it’s agony then it stops like there wasn’t a problem, then happens again, rinse and repeat.

I am on lyrica (has just been doubled), baclofen, tylenol, advil ice packs, massager. I’ve started to wrap the lower leg up with it and vibrate away. I did that last night managed to sleep through the night.

Then I had what felt like a bee stings. When they first started it felt like sharp pricks. That started the progression, all with numbers under 7 (after which I had that high ‘blip’ of a - HBAIC number.

They progressed to ‘surface’ pains - felt like lightning pains that made me cry out. It lasts longer and more often, is unbearable until the lightning like pains. I contacted doctors. Long story short, ended up in pain management doctors office. So, I”m having an epidural next week.

I am scheduled to see my favorite neurologist. See what she says. I have not seen her in a while. Ive been to others. But the on call said it doesn’t sound like polyradiculopathy, so off I go.

I’m over due for a proper diagnosis. Neuropathy is one thing, this all is something else. I live in this body and feel everything. There is no denying I’m in a “flare” of some kind with worsening symptoms.

I hope I get answers.

This is just me. I doubt I’m the poster child for SNF, but it’s a place to start.

They need to look at differentials and not blanket me with a diagnosis of neuropathy when the spasms are just as bad.

The one thing I strongly suggest, is learn as much as you can, get answers, treatment and take care of yourself. Don’t suffer in silence. Seek medical advice when you have issues.

💜

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@nemo1

Hello Ebero,

Sorry for the epic.

My problem used to be limited to the lower spine. Now I have issues with upper.

I’m no expert either. Were you recently diagnosed? I’m basically “new” to coming closer to a diagnosis but since 2021 I’ve been having problems, ones whose symptoms sound like ‘neuropathy’ (SFN).

However, I had a doctor tell me I need a biopsy to diagnose it. But my podiatrist said its neuropathy.

I’ve had diabetes I thought with decent control. For a time (a few months) numbers were high, but I was able to bring those blood sugar numbers down within 3 months to under 7. I was trying to avoid going on ozempic for specific reasons.

Symptoms started I’d say, with odd sensations. Before symptoms became worsened, they were mild. Mild meaning some numbness, a throbbing or twitchy type sensations with a burning sensation to bottoms of feet. I had sensitivity to touch.

The feet felt sun burned with sand paper rubbing the skin pain. When that developed, it stayed with me. Nothing relieves it. I could not put on tight/cotton socks or shoes.

The thing that does not seem to fit is all the spasms I have been getting. Bottoms of feet, calves, upper leg stiffness/pain, back…

Since early feb, had upper body involvement which prompted near future doctor appointments to figure out what this really is. Because as I’m feeling it, I thought it was just the feet, then legs and lower back. Now it’s involving upper body more and new things have crept in.

The nerve pains and muscle spasms are unbearable. There is no escaping it, Quality of life is reduced.

Some symptoms are 24/7 others come on unexpectedly without rhyme or reason and leave like they come on but I know they will always return, When it happens it’s agony then it stops like there wasn’t a problem, then happens again, rinse and repeat.

I am on lyrica (has just been doubled), baclofen, tylenol, advil ice packs, massager. I’ve started to wrap the lower leg up with it and vibrate away. I did that last night managed to sleep through the night.

Then I had what felt like a bee stings. When they first started it felt like sharp pricks. That started the progression, all with numbers under 7 (after which I had that high ‘blip’ of a - HBAIC number.

They progressed to ‘surface’ pains - felt like lightning pains that made me cry out. It lasts longer and more often, is unbearable until the lightning like pains. I contacted doctors. Long story short, ended up in pain management doctors office. So, I”m having an epidural next week.

I am scheduled to see my favorite neurologist. See what she says. I have not seen her in a while. Ive been to others. But the on call said it doesn’t sound like polyradiculopathy, so off I go.

I’m over due for a proper diagnosis. Neuropathy is one thing, this all is something else. I live in this body and feel everything. There is no denying I’m in a “flare” of some kind with worsening symptoms.

I hope I get answers.

This is just me. I doubt I’m the poster child for SNF, but it’s a place to start.

They need to look at differentials and not blanket me with a diagnosis of neuropathy when the spasms are just as bad.

The one thing I strongly suggest, is learn as much as you can, get answers, treatment and take care of yourself. Don’t suffer in silence. Seek medical advice when you have issues.

💜

Jump to this post

Hang in there! I have apparently had symptoms for years but am only now going to doctors and getting diagnosis/treatment. I think diabetes is a common entry point for neuropathy, not sure why they won't just treat you for it. My doctor put me on the Auto Immune Protocol Diet: https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
I went two weeks with NO sugar at all and it made a difference! Burning stopped and cramping in legs reduced.
I do not have diabetes, so I was run through a brain MRI, the skin biopsy and the electrical nerve tests and got the SFN diagnosis.
Best wishes to you, hope you find relief.
ebero

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I have neuropathy. It affects my calves to my toes. I was diagnosed years ago with small fiber neuropathy via a punch biopsy in my calf. It has progressively gotten worse. I saw a neurologist who ordered a nerve conductive study involving the lumbar down to and including my feet. That showed that now I have dvn which is causing a lot more pain, numbness and tingling in my feet and toes. MRI's showed that I also have lumbar herniated discs and radiculopathy. This may be an attributing factor in my neuropathy. I am now in my third week of lumbar spinal decompression every day. It seem to be having a good effect on this issue. Hopefully as time progresses, that techique will have conquered this issue. Due to the cervical spine having the same issue, I have pain, numbness and tingling in my hands and fingers. I hope to undergo cervical spinal decompression there also. I wish you hugs, bravery, and peace. Topricin Fibro Cream helps a lot with my nerve pain.

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Hi, can't find anything on a lumbar spinal decompression as a daily therapy, only a surgical procedure... what does a daily decompression therapy consist of? Thanks!

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@ebero

I'm no expert--I'm new to SFN, but I've had tingling in hands and feet and the pinprick sensations in my arms and legs just at the skin or surface level.

Jump to this post

Small Fiber Poly Neuropathy can be caused by vitamin B6 Toxicity. B6 Toxicity is caused by excess B6 accompanied by a dehydrating event. Thus, the excess is not excreted in our urine. I was taking 100mg of B Complex. There was 5,887% RDA of B6. Same symptom tingling, pins and needles, numbness weakness in lower legs up to my knee. It was idiopathic with no other reason.
understandingb6toxicity.com

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@debduh11

I have neuropathy. It affects my calves to my toes. I was diagnosed years ago with small fiber neuropathy via a punch biopsy in my calf. It has progressively gotten worse. I saw a neurologist who ordered a nerve conductive study involving the lumbar down to and including my feet. That showed that now I have dvn which is causing a lot more pain, numbness and tingling in my feet and toes. MRI's showed that I also have lumbar herniated discs and radiculopathy. This may be an attributing factor in my neuropathy. I am now in my third week of lumbar spinal decompression every day. It seem to be having a good effect on this issue. Hopefully as time progresses, that techique will have conquered this issue. Due to the cervical spine having the same issue, I have pain, numbness and tingling in my hands and fingers. I hope to undergo cervical spinal decompression there also. I wish you hugs, bravery, and peace. Topricin Fibro Cream helps a lot with my nerve pain.

Jump to this post

What is DVN?

Is the decompression you refer to done with a physical therapist? Reason I ask is because my therapist would take a long strap and hook it up around my foot (sneaker on) and do gentle tugging and swaying left to right on both legs one at a time each session. I’m not sure what it’s called but am wondering if it’s a form of decompression. Being that I know nothing about the therapy which you mention. I looked it up and found surgical intervention.

Hugs, bravery and peace - yes please!

is the top ricin like lidocaine cream?

Thank you and feel better.

🧡

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@seamusmacd

Hi, can't find anything on a lumbar spinal decompression as a daily therapy, only a surgical procedure... what does a daily decompression therapy consist of? Thanks!

Jump to this post

Look up spinal decompression therapy, could be a chiropractic treatment. It’s done with a machine by a trained professional.

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