1. < Neuropathy

Small fiber neuropathy?

Posted by Nemo1 @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?

Jump to this post

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.

REPLY
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....

REPLY
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.

REPLY
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.

Jump to this post

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.

REPLY
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.

REPLY
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.

REPLY
orsons | @orsons | May 31 9:23am

Thank you very much. Much appreciated.

Verna

REPLY
mmmerrimac | @mmmerrimac | Oct 20 5:14pm
In reply to @nemo1 "Hello Ebero, Sorry for the epic. My problem used to be limited to the lower spine...." + (show)
@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

I'm so sorry you've been going through this. Your symptoms and experience mirror mine in so many ways: pain!, tingling, fatigue, etc. I've been on a search for a diagnosis for almost 10 years.

I went to a movement disorder neurologist recently because of my restless leg, muscle spasms, and a tremor that I developed. She thought it might be Parkinson's, so she did a skin biopsy. It turned out I don't have Parkinson's, thank God, but the test results indicated small fiber neuropathy.

I'm trying to get an appointment with Johns Hopkins Small Fiber Neuropathy Center (I live in Maryland), but in the meantime I've been doing some research on SFN. I found a fantastic YouTube video of Anne Louise Oaklander of Harvard and Mass General in Boston. Her research on SFN is groundbreaking, and the video is one of the best I've found for explaining how SFN affects the body, and why the symptoms are so varied in type and location. There is a diabetes and/or glucose intolerance connection, although not everyone with SFN has diabetes/glucose intolerance.

I highly recommend the skin biopsy test. It shows the intraepidermal nerve density. Mine were low, indicating SFN. MRIs do not show SFN, which explains why my countless MRIs did not pick it up. Dr. Oaklander explains the difference between small and large fibers and why MRIs don't pick up SFN.

I don't know yet what my treatment options are, but I'm just so relieved to finally get an accurate diagnosis (I hope) of what's been going on with my poor, weary body. Wishing you the best of luck. Here are some helpful links. Let me know if you have any questions I might help with.

What Is Small Fiber Neuropathy?
https://my.clevelandclinic.org/health/diseases/17479-small-fiber-neuropathy)
Anne Louise Oaklander on SFN

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.