1. < Neuropathy

Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

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

Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2023
In reply to @tb01 "What are Ugg boots? Would they help me too? Where can I get them? TB01" + (show)
@tb01

What are Ugg boots? Would they help me too? Where can I get them? TB01

Jump to this post

Welcome @tb01, I'm not sure @kfrenc04 saw your reply so I thought I would respond. Ugg boots are just a brand of boots that some folks find warm and comfortable. I've never had them before but have friends that like them. Here's a link to see what's available:
https://www.ugg.com/boots/.
Have you been diagnosed with neuropathy?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 9, 2023
In reply to @behappy1 "Hi. From what I know, there is peripheral SFN and autonomic SFN. I would assume it..." + (show)
@behappy1

Hi. From what I know, there is peripheral SFN and autonomic SFN. I would assume it may be autonomic SFN you might have. I was misdiagnosed for over a year. Going from one neurologist to another, along with many other medical specialists.
There is a brilliant neurologist in NYC that finally diagnosed me and did all necessary testing, including skin and nerve biopsies, EMG/NCV and mri, blood tests , and had my diagnosis within a week. He wrote a book called “ the autoimmune brain”. His name is Dr. David S Younger. He thinks “ outside the box”, is kind, compassionate and brilliant. Perhaps this will be helpful to you and others.

Jump to this post

Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that helped you. Can you share a little more about your treatments and what has helped?

REPLY
2 replies
behappy1 | @behappy1 | Mar 9, 2023
In reply to @johnbishop "Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that..." + (show)
@johnbishop

Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that helped you. Can you share a little more about your treatments and what has helped?

Jump to this post

Hi, thank you for welcoming me. I will be speaking to my neurologist today , to discuss treatment, if there is any. He does want me on high doses of cannabis . I will be more specific after our conversation. I have tremendous empathy for anyone who endures the tremendous burning , pins and needle pain that I have suffered with for a year.

REPLY
bmelvin | @bmelvin | Mar 12, 2023
In reply to @brie87144 "@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like..." + (show)
@brie87144

@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like you said they said my other issues weren't apart of my SFN. Then I was diagnosed with chronic fatigue and bladder issues with it releasing it self to not being able to go at all. And diagnosed with IBS. I have a whole bunch of other things going on too but after being with mayo for 16 months, they still had no answers. And they weren't treating anything. My insurance found me another opinion and I was finally diagnosed with AAD-EDS (articilo-autonomic disorder/ Ehlers- Danlos spectrum disorder) which explains everything I have going on. From what I was told is that small fiber is caused by something. But trying to pinpoint it is the hard part and sometimes they never do. I was blessed when my insurance did an evaluation over my medical record when I asked and got me to the right doctor to be diagnosed. Have they looked for POTs? I have POTs and they said it's lile your body is stuck in fight or flight and it makes everything work incorrectly. Like my bladder, heart, bowels and hearing, etc

Not sure this will be much help but please if you need to reach out.

Jump to this post

Hello,

I was recently diagnosed with SFN, but have also had also every problem you described you have had above. I have been to Mayo and other hospitals with not much if any help. Who diagnosed you? I would appreciate any other advice you have. Thank you so very much!

REPLY
bmelvin | @bmelvin | Mar 12, 2023

Hello,

I am a 48 year old female who lost the ability to sit up, stand and walk shortly after having the Moderna vaccine in May of 2021. At the same time, I also developed severe pelvic floor dysfunction, a rectocele and Dyssynergia. Initially, over the course of about 6 months, I retaught myself to walk and only the pelvic floor dysfunction, Dyssynergia and complete numbness in my feet was left. In November of 2021 my legs began stiffening and now I am almost completely stiff and numb to my knees, I have developed joint pain in my hips and knees and have been diagnosed with SFN. I also do not have normal indications when I have to urinate. I have been to the Mayo Clinic twice (this is where I was diagnosed originally peripheral nerve damage as a side effect of the Moderna COVID vaccine) are currently working with doctors at Duke and have been in pelvic floor PT with limited success. Can anyone provide any information regarding similar issues, helpful intervention, specific specialist that might be able to help me? Any information would be incredibly helpful!

Thank you!

REPLY
1 reply
bmelvin | @bmelvin | Mar 12, 2023
In reply to @johnbishop "Welcome @tb01, I'm not sure @kfrenc04 saw your reply so I thought I would respond. Ugg..." + (show)
@johnbishop

Welcome @tb01, I'm not sure @kfrenc04 saw your reply so I thought I would respond. Ugg boots are just a brand of boots that some folks find warm and comfortable. I've never had them before but have friends that like them. Here's a link to see what's available:
https://www.ugg.com/boots/.
Have you been diagnosed with neuropathy?

Jump to this post

Go to the UGG Outlet online. UGGS are quite expensive and you can get them at a much better price from the outlet. I live in my UGG slippers because my feet are always frozen. If the online UGG outlet is not open, keep checking back on a regular basis. There are also UGG outlets all over the nation. You can find a listing of them on the UGG website.

REPLY
bmelvin | @bmelvin | Mar 12, 2023
In reply to @johnbishop "Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that..." + (show)
@johnbishop

Welcome @behappy1, Thanks for sharing your diagnosis. It sounds like you have a great neurologist that helped you. Can you share a little more about your treatments and what has helped?

Jump to this post

I have freezing feet from SFN too. Buy UGGS from the online UGG outlet. They are much less expensive and the same thing.

REPLY
Valerie | @lacy2 | Mar 12, 2023

.....would a painful flushed face mainly cheeks and nose, burning feeling whether flushed or not, since June 2022 possibly be SFN? I am waiting 7 months to see Neurologist I saw years ago 2016 for hands and feet p.n. after meds. Saw dermatologtist who had no diagnosis so on my own til end of April when see Neurologist.... Clinic where I go has no idea (nurse practitioners) and have offered no suggestions how to cope with the burning that now goes to lower jaw and neck and am beside myself with pain for hours...only today I discovered a site re SFN and sure sounds possible, thank you

REPLY
1 reply
larry4343 | @larry4343 | Mar 13, 2023
In reply to @bmelvin "Hello, I am a 48 year old female who lost the ability to sit up, stand..." + (show)
@bmelvin

Hello,

I am a 48 year old female who lost the ability to sit up, stand and walk shortly after having the Moderna vaccine in May of 2021. At the same time, I also developed severe pelvic floor dysfunction, a rectocele and Dyssynergia. Initially, over the course of about 6 months, I retaught myself to walk and only the pelvic floor dysfunction, Dyssynergia and complete numbness in my feet was left. In November of 2021 my legs began stiffening and now I am almost completely stiff and numb to my knees, I have developed joint pain in my hips and knees and have been diagnosed with SFN. I also do not have normal indications when I have to urinate. I have been to the Mayo Clinic twice (this is where I was diagnosed originally peripheral nerve damage as a side effect of the Moderna COVID vaccine) are currently working with doctors at Duke and have been in pelvic floor PT with limited success. Can anyone provide any information regarding similar issues, helpful intervention, specific specialist that might be able to help me? Any information would be incredibly helpful!

Thank you!

Jump to this post

Hi @bmelvin,
Very sorry to hear about your condition. your doctors are probably already aware, but I saw a paper by researchers at Mass General. They found that in some cases, post-Covid vaccine neuropathy was due to an autoimmune response. They were able to successfully treat most of the patients in their cohort with steroids, and/or IVIg. I’ve posted a link here in the past but you can probably find it faster by google, or by going to the publication section at the neuropathology Commons site. Best of luck.

REPLY
1 reply
bmelvin | @bmelvin | Mar 13, 2023
In reply to @larry4343 "Hi @bmelvin, Very sorry to hear about your condition. your doctors are probably already aware, but..." + (show)
@larry4343

Hi @bmelvin,
Very sorry to hear about your condition. your doctors are probably already aware, but I saw a paper by researchers at Mass General. They found that in some cases, post-Covid vaccine neuropathy was due to an autoimmune response. They were able to successfully treat most of the patients in their cohort with steroids, and/or IVIg. I’ve posted a link here in the past but you can probably find it faster by google, or by going to the publication section at the neuropathology Commons site. Best of luck.

Jump to this post

Thank you so much,

When this initially happened I was treated with 5 days of steroids and 5 days of IVIG. I am going to read what you sent me to see if the people in cohort received more treatments. Thank you again for the information!

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