1. < Neuropathy

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.

mlee5309 | @mlee5309 | May 25 11:38am
In reply to @judithlynne "I am so compassionate for what you are going through. I have extremely painful SFN in..." + (show)
@judithlynne

I am so compassionate for what you are going through. I have extremely painful SFN in my feet which I feel has spread to 2 other areas as well as peripheral neuropathy and a bulging disc, osteoarthritis and a torn rotator cuff and 2 torn meniscus. Gabapentin caused severe edema so I can't do pregabalin and I can't do Lyrica. It's extremely debilitating especially at night trying to sleep with so much pain with the SFN. I take 50mg of CBD 4-5 times a day which can take the edge off somewhat. But when I lay down the small fiber neuropathy pain is a 10 out of a 10. On Amazon you can buy these socks that have gel inserts that you put in the freezer and basically I freeze my feet so I can fall asleep and I take 5mg of THC in the CBD to knock my myself out so I can fall asleep. If you try CBD you want the full entourage effect which includes CBG and especially CBN which is supposed to help you sleep. I usually wake up two times and have to take more because the pain for SFN is unbearable and then I need to get a different pair of the frozen socks. I never had any Neuropathy issues before taking the Covid vaccines and all the boosters recommended. The pharmacist said there are stories of the vaccines causing SFN. I didn't even prompt her with that theory of a relationship with SFN and the Moderna Covid vaccines but I have intuitively felt that that's what happened with me. I had extremely painful side effects from all the vaccines. I guess it doesn't much matter now. I just wish there was either a cure or a non-anti-anxiety pain relief cream or pill for SFN. My neurologist had mayo pharmacy compound creams for me but because of the gabapentin it made it worse because it created more edema. I guess they can compound with ketamine cream but I don't want to go on psychedelic journey. Has anyone tried that? I don't want to take anything that affects cognition. and finally there are so many supposed "miracle" cures on the Internet especially Instagram and Facebook. Has any of those worked for anyone?

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It’s a lock that this is from Covid. I didn’t get the vaccine but I got the delta variant and my neuropathy began after the flu portion of Covid ended. My taste was off and smell took forever to come Back and then these neuropathy symptoms came on. My doctor said it was from vitamin deficiencies but I fixed those immediately and my symptoms only got worse. It’s been years now and I’m way worse off now than before my diagnosis. I had never even heard of anyone with symptoms like this. I had a family member with diabetic neuropathy but his cleared up quickly and the pain he describes is nothing like this. It’s absolutely enraging.

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jonelson4 | @jonelson4 | May 26 6:00am

The tingling and burning in my hands and feet started in 2021 after I had a severe case of Covid. I never got the Covid shots. It especially bothered me at night & was very depressing. Thankfully, it has gradually lessened and is now bearable. I exercise, eat low carb (no sugar), and don’t take any pharmaceuticals. I still take zinc, vitamin c, quercetin, and vitamin d daily. I also take a probiotic in the am and magnesium glycinate at night. I drink electrolytes in water every morning. So thankful that I can now get some sleep at night!

REPLY
suetex | @suetex | May 26 11:28am
In reply to @judithlynne "I am so compassionate for what you are going through. I have extremely painful SFN in..." + (show)
@judithlynne

I am so compassionate for what you are going through. I have extremely painful SFN in my feet which I feel has spread to 2 other areas as well as peripheral neuropathy and a bulging disc, osteoarthritis and a torn rotator cuff and 2 torn meniscus. Gabapentin caused severe edema so I can't do pregabalin and I can't do Lyrica. It's extremely debilitating especially at night trying to sleep with so much pain with the SFN. I take 50mg of CBD 4-5 times a day which can take the edge off somewhat. But when I lay down the small fiber neuropathy pain is a 10 out of a 10. On Amazon you can buy these socks that have gel inserts that you put in the freezer and basically I freeze my feet so I can fall asleep and I take 5mg of THC in the CBD to knock my myself out so I can fall asleep. If you try CBD you want the full entourage effect which includes CBG and especially CBN which is supposed to help you sleep. I usually wake up two times and have to take more because the pain for SFN is unbearable and then I need to get a different pair of the frozen socks. I never had any Neuropathy issues before taking the Covid vaccines and all the boosters recommended. The pharmacist said there are stories of the vaccines causing SFN. I didn't even prompt her with that theory of a relationship with SFN and the Moderna Covid vaccines but I have intuitively felt that that's what happened with me. I had extremely painful side effects from all the vaccines. I guess it doesn't much matter now. I just wish there was either a cure or a non-anti-anxiety pain relief cream or pill for SFN. My neurologist had mayo pharmacy compound creams for me but because of the gabapentin it made it worse because it created more edema. I guess they can compound with ketamine cream but I don't want to go on psychedelic journey. Has anyone tried that? I don't want to take anything that affects cognition. and finally there are so many supposed "miracle" cures on the Internet especially Instagram and Facebook. Has any of those worked for anyone?

Jump to this post

What you have to put up with amazes me. I am so grateful (and puzzeled) that I don't have pain. Just feet that don't know where they are. This loss of balance would be awkward for anyone but I'm a horse person. Without the ability to jump out of the way if I need to. Or the ability to lift my leg to swing over the back of a horse. I can't even pick up a horse's foot without losing my balance-in a big way!
Here is my non medical take on what is happening with some of us SFN people. Everyone's body makes antibodies. It is part of our survival skills, and we take advantege of this ability to make vaccines. However, some of us are too good at it and get started making antibodies against our own body, in this case our small nerve fibers. Which are treated like foreign invaders and so get distroyed. Only part of a complicated picture, of course. Now we have to fix this, and that is a bigger question, one the medical community is working on. Stay tuned....

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artemis1886 | @artemis1886 | May 27 6:54am

I am not diabetic. Mine is autoimmune. I have had emg/nerve conduction test and biopsy. You can get neuropathy from medications, diabetes, autoimmune and idiopathic.
I was diagnosed with severe axonal sensorimotor (another word) polyneuropathy. B6 is not a good vitamin to take. It takes years to get out of your system. Dr. Oaklander told me to take a multivitamin every other day. I also take B12 shots the first two days high after the shot them starts coming down. Due to the neuropathy I have Gastroparesis and I can go for days without eating. I was diagnosed with cardiac autonomic neuropathy. To confirm it they did the test for SFN. The biopsy is considered the gold standard to diagnosing SFN.
My neurologist did the biopsy in three different places. You can’t tell someone they have SFN without the biopsy.
I am fixing to be tested for CIDP and a spinal tap to confirm.

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1 reply
orsons | @orsons | May 27 8:02am
In reply to @artemis1886 "I am not diabetic. Mine is autoimmune. I have had emg/nerve conduction test and biopsy. You..." + (show)
@artemis1886

I am not diabetic. Mine is autoimmune. I have had emg/nerve conduction test and biopsy. You can get neuropathy from medications, diabetes, autoimmune and idiopathic.
I was diagnosed with severe axonal sensorimotor (another word) polyneuropathy. B6 is not a good vitamin to take. It takes years to get out of your system. Dr. Oaklander told me to take a multivitamin every other day. I also take B12 shots the first two days high after the shot them starts coming down. Due to the neuropathy I have Gastroparesis and I can go for days without eating. I was diagnosed with cardiac autonomic neuropathy. To confirm it they did the test for SFN. The biopsy is considered the gold standard to diagnosing SFN.
My neurologist did the biopsy in three different places. You can’t tell someone they have SFN without the biopsy.
I am fixing to be tested for CIDP and a spinal tap to confirm.

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I am going to Kings College in London in August. I will see a consultant who is an expert in the field of Peripheral Neuropathy. It all happened in 2020 together with tinnitus under active thyroid Dysmotility of Osophaegus IBS and Pericarditis. You couldn't make it up! I lost a load of weight and went down to 7 stone. I think I have had a record number of tests at my local hospital that I should have a plaque on the entrance wall! I just want to know how I got it all. I never got COVID or was this another form. I really don't think the scientists are anywhere near knowing enough about the COVID NIGHTMARE. I am taking B12 in tablet form but my neighbour has shots like you and finds them to be very beneficial. I will ask my GP if I can have them.

REPLY
2 replies
artemis1886 | @artemis1886 | May 27 8:16am
In reply to @orsons "I am going to Kings College in London in August. I will see a consultant who..." + (show)
@orsons

I am going to Kings College in London in August. I will see a consultant who is an expert in the field of Peripheral Neuropathy. It all happened in 2020 together with tinnitus under active thyroid Dysmotility of Osophaegus IBS and Pericarditis. You couldn't make it up! I lost a load of weight and went down to 7 stone. I think I have had a record number of tests at my local hospital that I should have a plaque on the entrance wall! I just want to know how I got it all. I never got COVID or was this another form. I really don't think the scientists are anywhere near knowing enough about the COVID NIGHTMARE. I am taking B12 in tablet form but my neighbour has shots like you and finds them to be very beneficial. I will ask my GP if I can have them.

Jump to this post

Since I have gastroparsis from the neuropathy my body does not absorb nutrients. I can go a week without eating. I stay nauseous. The injectable B12 helps my a lot.
After, the shot elevated for a couple of days. I take them every other week. I can tell when I skip pain is worse.

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bobweller | @bobweller | May 28 8:42am

My feet started hurting in early 2018 after my second liver transplant. The doctor just called it Periferial Neuropathy. I saw SFN in Mt doctors report back in 2018. I have a new Neurologist now but the previous doctor said it might be from taking Prograf/Tacrolimus immune surpressant for my organ transplants.

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mizuzfritz | @mizuzfritz | May 30 7:48pm
In reply to @orsons "I am going to Kings College in London in August. I will see a consultant who..." + (show)
@orsons

I am going to Kings College in London in August. I will see a consultant who is an expert in the field of Peripheral Neuropathy. It all happened in 2020 together with tinnitus under active thyroid Dysmotility of Osophaegus IBS and Pericarditis. You couldn't make it up! I lost a load of weight and went down to 7 stone. I think I have had a record number of tests at my local hospital that I should have a plaque on the entrance wall! I just want to know how I got it all. I never got COVID or was this another form. I really don't think the scientists are anywhere near knowing enough about the COVID NIGHTMARE. I am taking B12 in tablet form but my neighbour has shots like you and finds them to be very beneficial. I will ask my GP if I can have them.

Jump to this post

If your GP doesn't want to allow you B12 shots, you can get them fairly easily online. Go to the facebook page "Vitamin B12 Wake Up" and become a member...there are all sorts of files, etc. for the cofactors, sales, diagnosis, etc. of B12 deficiency. Great site, lots of info.

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orsons | @orsons | May 31 9:23am

Thank you very much. Much appreciated.

Verna

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