Hi Canagirl, I am in the same boat. I am affected head to toe including face. In addition I have UC flare (bloody bowl movements) to deal with. My eyes even bother me as I have Blepharitis. All these happened in just last year. I was healthy before. I am not sure I can get better either I am praying for you and me both.

I'm so sorry. Thank you for sharing this. I too have it in all those places - scalp, jaw, inner ears, throat etc. At the start of all of this, I had wet, hot, warm sensations inside my ears, a roaring case of tinnitus, and a balance disorder (disequilibrium - the floor moves when I walk). I even lost my hearing for 48 hours in one ear - my hearing got turned up to 11 (hyperacusis), after that I heard sound in different two tones with a time delay (diplacusis). This coincided with my worst period of burning.

I have body-wide burning with a normal skin biopsy (2 punches in the leg), large fiber damage in one of my legs, and sensory deficits in my arms (they are not numb, but are dulled and can't sense temperature). It is very frustrating indeed to not find the cause. Hang in there. Do you have any issues with swallowing?

Madison Girl... how brave we have to be. Thanks for sharing.
Peace and Grace

[QUOTE=madisongrrl;1149177]I'm so sorry. Thank you for sharing this. I too have it in all those places - scalp, jaw, inner ears, throat etc. At the start of all of this, I had wet, hot, warm sensations inside my ears, a roaring case of tinnitus, and a balance disorder (disequilibrium - the floor moves when I walk). I even lost my hearing for 48 hours in one ear - my hearing got turned up to 11 (hyperacusis), after that I heard sound in different two tones with a time delay (diplacusis). This coincided with my worst period of burning.

I have body-wide burning with a normal skin biopsy (2 punches in the leg), large fiber damage in one of my legs, and sensory deficits in my arms (they are not numb, but are dulled and can't sense temperature). It is very frustrating indeed to not find the cause. Hang in there. Do you have any issues with swallowing?

Hi Madisongrrl
I'm sorry you are suffern with this type of pain. I get the "roaring" tinnitus and it coincides with my worst period of burning too. I thought I was the only one, mine is exactly like that. (I do not have a balance disorder tho ) Sometimes I get the "high pitch sound-tinnitus" all day long with or with out burning. And sometimes I get horrible "surges" of buzzing from in my gut that runs down my legs with the tinnitus. I do not get any dulled feeling and I have no loss of temperature anywhere.
what do you mean by hyperacusis and diplacusis? Did you get checked by an ear Doctor? Did he dx you with these "things" going on in your ears?

What is mostly disturbing to me is that you say your punch skin biopsy was normal. Are you saying the Doctor(s) are saying you do not have small fiber neuropathy? What do you suffer from? Im sorry for all the questions.
Rewind: I had a punch skin biopsy (2 sites, lower calf and thigh) in 2012 at that time the results were "mild" : Consistent with small fiber neuropathy. My symptoms were anything but mild and continued to progress. In 2013, I had another skin punch biopsy at Mt Sinai Hospital, NYC. It Showed no progression, but result was still "mild SFN".

Fast Forward..I'm getting worse, more pain, tingling, pins & needles, buzzing, burning, stabbing ,poking, itching, (all over inclding face, mouth & scalp) and now I develop tinnitus, etc. March 2015 , I go back to Mt Sinai Hospital (Dr Lan Zhou-Neuro-muscular Doc). She does another punch skin biopsy (3 sites). I was terrified the results would show progression after 2 years. To my surprise the results came back as "Normal, No SFN"!!! I asked the Doc how could this be with all this pain and burning. She could not explain why there was no correlation between my pain and the "normal results". She said there was NO MARGIN FOR ERROR! She said she counted the fibers herself. My missing nerves grew back! The only thing she kept saying was, this was GOOD news. The "injured nerves were healing"! My Biopsy showed improvement, "I was getting better".
As you can imagine I was excited and confused. But I hung on to her (Doctor) every word. That I was healing or getting better. I'm just waiting for my symptoms to"catch up".

After reading your post, I'm not so sure anymore. I'm heart-broken and more depressed. I don't trust or believe these Doctors anymore. I know I still have small fiber neuropathy!! I hate it, It has ruined my life..

Also, what do you mean by you have large fiber damage in one leg, how was this diagnosed? Did you have an EMG or NCS? Were you told you have SFN (small fiber neuropathy)?

If "our" skin biopsy's are "normal" then why do we suffer the way we do...?

Hugs to you , Marie

[QUOTE=canagirl;1148246]Hi

When I wake up, any muscles that were engaged while sleeping or touching the bed shake and twitch so quickly I feel like I'm having a skin and muscle seizure. Does anybody get this? It last for a while then lessons to normal shaking and twitching . happens everywhere face neck,scalp, arms , legs etc
Also, does anybody have permanent pins and needles and tingling in lower legs/ feet and lower arms/ hands? I mean all day everyday? Has anybody had this improve? I'm so scared...

Any part of my body that is being used will go into overdrive twitching, tingling , pins and needles etc. ex. If I sruntch my face up ( I often make funny faces at my son when we r being silly) my face goes into such crazy fast twitching mode it's like having a seizure. Along with extra tingling , pins and needles etc. does this happen to anyone else?
I just feel like my sensations are so much more widespread than others on here and much higher in severity. I feel like since us the case there is no chance of recovery. What r the chances of every nerve in my body healing?

Hi Canagirl
I'm sorry your having such a hard time!
I received your email(s). I wrote a reply email to you about a month ago. Apparently you haven't received it. I'm having a hard time responding to you. I would like to talk to you and answer any questions. I do not want you to think I'm ignoring you. Your profile says you do not accept emails. let me know how to "contact" you.
Sincerely
Marie

[QUOTE=Marie33;1148418]Hi Marie,
Thanks for responding. I had no idea my profile said I don't accept emails and I haven't received ur emails. Please pm me!

Thank u to everybody that takes the time to respond. I really do appreciate it. The responses do help and I do try to take what you in and try my best to heed the advice. It's just so hard! I know you all know this. I just keep needing to be reminded and need to hear the stories ( bad and good) of others

Yes this happens to me. I don't feel like I'm having a seizure though. I started taking videos to show my doc of all the twitching because it hasn't happened in his office and he always asks me if anything visible is happening. So... this time I have some footage of some wild wigging out my body does.

The thing that makes me the most upset is when I laugh, I have to stop laughing because sometimes I get lightheaded like I could pass out and my stomach muscles go insane with twitching from the exertion. It doesn't happen all the time though. I think it has to do with how bad my autonomic stuff is at any particular time.