Originally Posted by janieg

The best way I've heard the "altered sensation" I have in the toes on my right foot described is that they feel like my socks are bunched up. When it first started, I found myself continually checking my socks. It's kind of like a numbness, but it's not. I still have full sensory perception in those toes, I just feel something else that's not really there.

Originally Posted by canagirl

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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?

Originally Posted by Marie33

Canagirl... I've been frequently reading your posts but haven't yet reached out, partly because I, for one, can't offer what you want to hear... that it will get better. At least I can tell you that you are not alone. It seems to be something you need to hear. I have the burning, stabbing, pins and needles, tearing, stabbing pain EVERYWHERE in my body. Mine started after a bout with a horrible virus and spread quickly, and there I've stayed now for several years. I have been tested, literally, for everything under the sun, including a paraneoplastic syndrome, but it eventually circled back around to the virus after blood tests revealed that even after several years it was still active. Recently, after consultation with a new neurologist, it has been suggested that I have central pain syndrome. I hardly recognize myself with the pure grief that I've experienced because of how it has changed my life. I do persevere through it and have relented to taking the medication necessary to help me just survive this. It isn't anything anybody is capable of understanding unless you've experienced it, and the anger and isolation it has created between me and everybody else around me is something else I have to fight. I work hard to maintain my family, work and (minimal) social life, though everything has suffered. I refuse to let this unexplainable, unimaginable pain rob me of absolutely everything, and with time maybe you'll come to a place emotionally where you can dig deep to accomplish that. I takes a lot of courage. I, too, completely panicked when it all began four years ago, and especially struggled with the suggestion from a doctor or two that it may have all been produced from "anxiety." Of course I have anxiety... my body burns from head to toe! I also had severe, severe nausea, fatigue and muscle spasms which continue today but have improved over time. I have "good" days occasionally where the pain is maybe only a 6 (ironic), and I try to seize those days to do the things I like and enjoy them as best I can. I'm a stranger, but I just wish I could hug you because I understand your fear and grief. Maybe just knowing this will help in some small way.

Hi heb1212
I'm sorry you are having so much pain and suffering. I understand your pain. I also have widespread neuropathic pain. I thought I was the only one who had it all over. A lot of what you say sounds like me. This beastly thing scares me too! It has ruined my life. Mine is idiopathic, it was dx by punch skin biopsy. The only strange thing (according to all my neuro-muscular doctors) is that I do not have any numbness at all. It all started in March 2011 with pins and needles in my calves and burning under both feet..Boy little did I know what I was in for. I am otherwise "healthy" , but life as I once knew it, is gone ...I can not even work anymore (I miss my job)...
Over the past 4 years it spread to my arms, hands, fingers, torso, scalp, mouth , lips and throat, etc. Burning and yes, surges of buzzn starting in my torso, through -out my body going down my arms and legs! Its awful!!! It feels like my whole- body-electrical system is out of whack. when the burning starts, I also get "over-heated" feelings. last year I developed "tinnitus". I hear a high pitch sound while I'm having buzzing and burning!! No one understands what I'm feeling. I look well. I too, feel lonely and isolated. Even my Doctors don't know whats going on with me..Its frustrating and scary living this way. I hear the word "progression" and it scares me...
How was your Neuropathy diagnosed? And what kind of N do you have? Are your large nerves involved? sigh..sorry for ranting, I just had to vent.
Hugs
Marie

Originally Posted by heb1212

It progressed to my whole body within a couple months, including my scalp, face, mouth, tongue, gums, throat, inner ears. I also have the ear ringing, but that only started this year. It's both a high pitched ring and a rumble sound. I also look completely "healthy." People who know of my challenge always tell me, "Well, you look great!" Not really... I've let myself go because the challenges of just getting through the day are all I can handle. I also don't have any numbness. It's just a constant burning and other types of paresthesia. The thing is, my skin biopsy was considered normal..

Originally Posted by madisongrrl

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?

Originally Posted by Marie33

Hi Madisongrrl
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.

Originally Posted by Marie33

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?

Originally Posted by Marie33

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".

Originally Posted by Marie33

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".

Originally Posted by Marie33

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