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