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?

I have been trying to get you to slow down and I'm sorry. I can hope that you are in an acute phase or have a systemic need like hydration or a mineral deficiancy. I have pins and needles from knees down and numbness in toes but the sensations are more of an aggravation. I think you are on a downward spiral in your thinking as far as every nerve in your body having to heal. Has a Neurologist told you this?

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?[/QUOTE]

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.

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

Thanks so much heb1212 and narie33, it helps to know somebody understands this.

Marie, I don't have numbness either. When I start getting my compression sensation ( feels like I'm wearing bodysuit that gets tighter and tighter) I FEEL numb but I'm not. I can touch my leg and still feel my hand.

My neuropathy has been constant since it started in januarary. it started out as pins and needles, but eventually experienced all the kinds that ever one has, stinging, prickling, tickling,sensitivity, twitching,,etc.
Numbness is usually nerve damage, like those with diabetes, but it does happen.
i also have loss of sensation and altered sensation in my right hand as well, maybe thats what your having, some reduced sensations.

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.

My right hand experiences similar thing, it seems when im touching something its like its either reduced sensation, or its altered sensations, its wierd that i cant describe it.

Hehehe....I have what I call "pretend" rocks in my shoes all the time. Take my shoe off and there are no rocks in my shoe.

I have tingling all the time. I also have some loss of sensation.

Marie... thank you so much for your hug of support and understanding. Really, I think we're an odd bunch even within the peripheral neuropathy world. I'm so tired of reiterating my story to doctors -- always trying desperately to find out what's caused this -- only to be asked the same questions: What's your pain like on a scale of 1 - 10? 9. Where does it burn? Everywhere? Yes, EVERYWHERE. How discouraging that they can't even fathom it. Mine, too, started with intense burning in my toes, then feet, and tingling in my claves. 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. They nerve fiber densities were within range at the ankle and just barely at the thigh; but, there was "occasional" axonal swelling of "unclear clinical significance." So, they have suggested I have a central pain syndrome likely triggered by the prolonged viral activity I experienced. Vent all you want... we absolutely need each other for that. I only periodically check in on the threads here, though, because I find that I become overwhelmed sometimes. Day by day and by God's grace I make my way through this life changing experience. It's humbled me greatly.