Could this be neuropathy?

ChookityPop

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I have this thing that bothers me. Could it be PN or SFN?

For example when I type a lot on my computer I get this crazy burning pain/sensation in my arms. All the way from my wrists to high up towards my shoulders. Its very painful and I have to stop typing. Anyone else?

It also comes and goes in a way. This summer I felt the best Ive felt in a since my relapse and the burning wasn't that big of a problem that it normally is, though it was noticeable ofc.

I dont have any skin pain where it hurts to touch etc. But I had that in my legs when I relapsed last year, I couldnt have my sleeping blanket over my legs etc.

I cant play videogames anymore because of this and that breaks my heart tbh and I cant type that much either. fuck! It couldve been worse I guess. Thats what I tell myself, it can always get worse. So shut up pussy.

How have you diagnosed PN or SFN? And do any of you guys have the same issues? I would LOVE to get rid of this.
 

Pyrrhus

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when I type a lot on my computer I get this crazy burning pain/sensation in my arms. All the way from my wrists to high up towards my shoulders. Its very painful and I have to stop typing.
That might well be peripheral neuropathy of a large nerve in the arm. A neurologist may be able to do a nerve conduction test to confirm this or figure out which nerve is affected.

I dont have any skin pain where it hurts to touch etc. But I had that in my legs when I relapsed last year, I couldnt have my sleeping blanket over my legs etc.
When it hurts to touch the skin, that sounds more like small-fiber neuropathy, which is a related, but different type of peripheral neuropathy. Small-fiber neuropathy can be confirmed with a skin-punch biopsy.

Hope this helps.
 

ChookityPop

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That might well be peripheral neuropathy of a large nerve in the arm. A neurologist may be able to do a nerve conduction test to confirm this or figure out which nerve is affected.



When it hurts to touch the skin, that sounds more like small-fiber neuropathy, which is a different type of peripheral neuropathy. Small-fiber neuropathy can be confirmed with a skin-punch biopsy.

Hope this helps.
Helps a lot. Thank you!
 

Pyrrhus

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There are also many other interesting discussions on neuropathy:

Autonomic and peripheral neuropathy with reduced intraepidermal nerve fiber density can be observed in patients with gastrointestinal dysmotility
https://forums.phoenixrising.me/thr...ents-with-gastrointestinal-dysmotility.79113/

Link Between Sleep Apnea and Peripheral Neuropathy
https://forums.phoenixrising.me/threads/link-between-sleep-apnea-and-peripheral-neuropathy.77855/

Cardiovascular Autonomic Neuropathy CAN
https://forums.phoenixrising.me/threads/cardiovascular-autonomic-neuropathy-can.79812/

Have you been diagnosed with Idiopathic Polyneuropathy?
https://forums.phoenixrising.me/thr...agnosed-with-idiopathic-polyneuropathy.77194/

Mitochondrial and bioenergetic dysfunction in trauma-induced painful peripheral neuropathy
https://forums.phoenixrising.me/thr...-induced-painful-peripheral-neuropathy.54438/
 

ChookityPop

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There are also many other interesting discussions on neuropathy:

Autonomic and peripheral neuropathy with reduced intraepidermal nerve fiber density can be observed in patients with gastrointestinal dysmotility
https://forums.phoenixrising.me/thr...ents-with-gastrointestinal-dysmotility.79113/

Link Between Sleep Apnea and Peripheral Neuropathy
https://forums.phoenixrising.me/threads/link-between-sleep-apnea-and-peripheral-neuropathy.77855/

Cardiovascular Autonomic Neuropathy CAN
https://forums.phoenixrising.me/threads/cardiovascular-autonomic-neuropathy-can.79812/

Have you been diagnosed with Idiopathic Polyneuropathy?
https://forums.phoenixrising.me/thr...agnosed-with-idiopathic-polyneuropathy.77194/

Mitochondrial and bioenergetic dysfunction in trauma-induced painful peripheral neuropathy
https://forums.phoenixrising.me/thr...-induced-painful-peripheral-neuropathy.54438/
Thanks!!
 

junkcrap50

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After a while the burning in my arms almost disapeared, the same with the burning in my legs.
I get burning pain after exertion, this can be from typing too much that will make my arms burn.
These quotes, as well as many of your other posts, reference burning as a major symptom of yours. Not sure where to ask/talk about it, so posting here. Can you expand on describing your burning pain?

Is this a nerve burning or a muscle burning? Is this a heat or fire burning feeling, electrical type burning, or a lactic acid burning feeling? Is it isolated/stay in one place? Or does it travel up your limb/nerves?

Where do you get this burning? Seems from your posts like it's all over: upper back, arms (when typing), legs (sheet sensitivity), etc. Does it move around? Do you get it in your feet like typical neuropathies?

You say get the burning pain after exertion. Can you expand on this? If you sat or laid still, would you have burning pain? Or does it come on quickly and go away quickly with motion/effort/exercise? Is it isolated to only the areas/muscle being used?
 

junkcrap50

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I ask these questions because I am trying to figure out the cause of my muscle burning, which started after doing methylation protocol (so maybe taking folate & B12 screwed up & caused SFN in me by causing b12 deficiency). After doing methylation protocol, my muscles would burn with any movement such as climbing the stairs, combing my hair, brushing my teeth, holding a piece of paper up to read, and even burning in my abs when standing/leaning when it was at its worst. Intensity varies day to day. I never thought it was nerve related as it felt like it was in my muscles and not electrical/nerve pain. Any overlap with our burning symptoms? Could mine by small fiber neuropathy? Thanks.
 

ChookityPop

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These quotes, as well as many of your other posts, reference burning as a major symptom of yours. Not sure where to ask/talk about it, so posting here. Can you expand on describing your burning pain?

Is this a nerve burning or a muscle burning? Is this a heat or fire burning feeling, electrical type burning, or a lactic acid burning feeling? Is it isolated/stay in one place? Or does it travel up your limb/nerves?

Where do you get this burning? Seems from your posts like it's all over: upper back, arms (when typing), legs (sheet sensitivity), etc. Does it move around? Do you get it in your feet like typical neuropathies?

You say get the burning pain after exertion. Can you expand on this? If you sat or laid still, would you have burning pain? Or does it come on quickly and go away quickly with motion/effort/exercise? Is it isolated to only the areas/muscle being used?
I will try to describe the burning pain I experience but its very hard to explain.

The burning can vary. Sometimes I have burning pain in what Im pretty sure is the median nerve, since I can feel the nerve itself is irritated.


"Is this a nerve burning or a muscle burning? Is this a heat or fire burning feeling, electrical type burning, or a lactic acid burning feeling? Is it isolated/stay in one place? Or does it travel up your limb/nerves?"

I honestly don't know, it may be both. I think its both nerve and muscle burning. and it can be the one or the other at different times and both at the same time. It kind of itch burns. Maybe electrical? But at the same time it may feel like fire burning too. I honestly have big issues describing it. I have a feeling of lactic acid burning as well.

You can get lactic acid pain in the muscles from SFN as I have understood. Since it can decrease circulation making it harder for the blood to transport oxygen to the muscles.

I have burning in my arms when typing too much and after different exertions. In my legs as well which is also connected to exertion. I get coat hanger pain which is a dysatuonomia symptom and it feels like lactic acid buildup in my upper back on both sides of my back. It feels like I dont get enough oxygen in those muscles. It helps sitting down and it also helps using a needle mat.

I dont have the sheet sensitivity anymore, though I can get it sometimes. The burning in my legs isnt that bad anymore either, though it goes up and down in severity. I think compression has been one of the best things Ive done. I have less fasculations after I started using compression as well. I had hardcore burning pains and muscle twitches in my legs and in the beginning I couldnt stand the feel of compression. But I pushed through since the pain I get from walking got a little better and after a while the burning and twitching got better.

I dont get pain if I lay in bed and take it easy. But when I first get the burning it can take a while before it gets better, from days to weeks or sometimes it can disapear faster. It feels like it isnt that isolated. I get burning on different places on my arms, but the same ish each times.

Its also possible to have SFN and dont experiencing burning pain at all. You can have it without knowing it. SFN is very likely vastly underdiagnosed.

https://www.youtube.com/results?search_query=oaklander+small+fiber+neuropathy
You have probably seen this, if not I highly recommend it. All ME patients should watch this.

https://arrowheadhealth.com/will-compression-garments-help-with-peripheral-neuropathy/
"Most people think the increased blood flow velocity and the compressed fabric on your skin will help with the burning sensation and discomfort that often accompanies peripheral neuropathy. Compression garments have also been said to reduce cramping and help with nerve and temperature sensitivity."
 

ChookityPop

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I ask these questions because I am trying to figure out the cause of my muscle burning, which started after doing methylation protocol (so maybe taking folate & B12 screwed up & caused SFN in me by causing b12 deficiency). After doing methylation protocol, my muscles would burn with any movement such as climbing the stairs, combing my hair, brushing my teeth, holding a piece of paper up to read, and even burning in my abs when standing/leaning when it was at its worst. Intensity varies day to day. I never thought it was nerve related as it felt like it was in my muscles and not electrical/nerve pain. Any overlap with our burning symptoms? Could mine by small fiber neuropathy? Thanks.
"so maybe taking folate & B12 screwed up & caused SFN in me by causing b12 deficiency)".
Did you mean excessive levels of b123? Im sorry Im not that familiar with methylation protocols though I have been looking a little bit into it lately since I have homocysteine levels quite I bit under the ref range.

I def get burning sensations in my muscles as well. At times it has been quite severe. But I also get this irritated, burning sensation in what I believe is my median nerve.

As I have understood its possible to have SFN without even knowing it. Dr Oaklander talked about that in the video I sent above. I have also talked to people with no burning at all who are positive for autoimmune SFN autoantibodies. Its possible to have a negative skin biopsy and have a positive sweat test and vice versa. So a patient with CFS ME should absolutely demand a skin biopsy. Dr Oaklander used fibromyalgia as an example, if she had fibro the first thing she would do would be to demand a skin biopsy. The same with CFS ME. The earlier the better as well.

Im no expert but I would say you should absolutely get adequately tested for SFN. In the future this will be be a standard thing to test for in ME CFS patients. I see more and more ME CFS patients getting diagnosed with positive skin biopsies. I had to make a complaint 3 times before I got my skin biopsy. Its not common practice where I live and probably most places. So its important to not stop before you get the appointment.
 

junkcrap50

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I will try to describe the burning pain I experience but its very hard to explain.
You can get lactic acid pain in the muscles from SFN as I have understood. Since it can decrease circulation making it harder for the blood to transport oxygen to the muscles.

I have burning in my arms when typing too much and after different exertions. In my legs as well which is also connected to exertion. I get coat hanger pain which is a dysatuonomia symptom and it feels like lactic acid buildup in my upper back on both sides of my back. It feels like I dont get enough oxygen in those muscles. It helps sitting down and it also helps using a needle mat.
Thanks for replying. Yes I know it's hard to describe how this stuff feels and our symptoms. But You were helpful. Didn't think SFN could do lactic acid type burning, but hearing from others, it can.

Its also possible to have SFN and dont experiencing burning pain at all. You can have it without knowing it. SFN is very likely vastly underdiagnosed.
I knew it was common in ME/CFS & Fibro, but thought it was only for neuropathy pain symptoms. Didn't think it presented much differently or with no symptoms at all.
 

junkcrap50

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Did you mean excessive levels of b123? Im sorry Im not that familiar with methylation protocols though I have been looking a little bit into it lately since I have homocysteine levels quite I bit under the ref range.
Not really sure what body levels of B12 led to the muscle pains. Must be low B12 as neuropathy comes from low b12, not high b12. However, I was taking high levels of B12 sublingually and methylfolate. So how can you get low B12 levels when taking sublingal b12? It is possible with methylation supplements. The whole protocol and science behind it is... inexact. It can kickstart cell growth & cell metabolism, increasing demand for B12/folate & thus drain whatever you have in your body, causing a paradoxical deficiency.

I would be very cautious on methylation and read as much as you can until you think you know it all, then read some more. I permenantly harmed myself by it (muscle pains going on 5 years now). Whatever you do, start very low and slow. And if you get negative side effects, stop and wait till they go away and restart slow.

I've pretty muched ruled out all other causes for my muscle pain besides SFN, so if a positive SFN biopsy comes back, it'll likely be due to b12 deficiency (even though testing my levels show normal). I'll will try taking B12 and folate again, but am worried because each time I've tried it made me worse. Got to figure out a way to do it without harming myself like I did originally.

As I have understood its possible to have SFN without even knowing it. Dr Oaklander talked about that in the video I sent above. I have also talked to people with no burning at all who are positive for autoimmune SFN autoantibodies. Its possible to have a negative skin biopsy and have a positive sweat test and vice versa. So a patient with CFS ME should absolutely demand a skin biopsy. Dr Oaklander used fibromyalgia as an example, if she had fibro the first thing she would do would be to demand a skin biopsy. The same with CFS ME. The earlier the better as well.

Im no expert but I would say you should absolutely get adequately tested for SFN. In the future this will be be a standard thing to test for in ME CFS patients. I see more and more ME CFS patients getting diagnosed with positive skin biopsies. I had to make a complaint 3 times before I got my skin biopsy. Its not common practice where I live and probably most places. So its important to not stop before you get the appointment.
Yeah. I'm learning a lot about SFN. Never interested me so I never learned about it. Thanks for the videos & Dr. Oaklander's talks. I'll watch some of them. I definitely am going to push for a biopsy. Got to research it and present my case with convincing support.