I honestly feel im losing it... severe pain Could it be small fiber neuropathy?

Hello everyone! This is my firts post here. I've been diagnosed with fibromyalgia 3 years ago, but i had this pain all over for 10 years now.. But 3 years ago had the flu and left with more severe pain on my whole skin rom head to toe is just unbearably painful burning prickling, and just a touch, a hug, my clothing and shoes causes serious pain like sand paper and even cold air or wind not to mention my bedsheets..and its been like this for 3 years. My pain specialist said im a "1 in a million" probably because he never met someone with such an ugly widespread allodynia and pain.even my scalp and face skin is aching and so painful to touch i cant be kissed or hugged not to mention have a normal love life, i also suffer with vulvodynia(painful sore burning and constantly irritated uncomfortable vulva) my life is seriously not worth living.I don't know who to turn to i dont know what to do, My MRI tests showed nothing apart from some neck problems, but that doesnt explain the extent of my symptoms... i had nerve conduction tests which showed nothing..i wonder if i might have small fiber neuropathy, but i havnt had a biopsy, and my neurologist will only see me 6 moths later probably to tell me he cant do anything, can i request a biopsy for small fiber neuropathy? As it hasnt been ruled out yet??my whole body is a prison for my soul with all the severe suffering from these pain problems i think about death every day and i seriously wouldnt mind to die if i had to right now ..My life is a hell sorry about this long post, but want to know if anyone ever feels the way i feel as it is seriously debilitating and depressing to live like this.I'm 27 female and I have no friends, and cant socialize. I take imipramine, for the pain but it does nothing for the pain just helps me sleep at night. hugs and xxx please soemeone tell e there is hope for me.

6 Replies

  • awwwww reading your post is heart breaking , I also suffer pain all over my body and my sin on the sides of my arms and back is very sore even with the slightest touch, my muscles burn I cant open tins with a tin opener and I cant hold things for long nor lift my arms above my head I have been diagnosed with fibromalogy and I no that is what I have , this must be very hard for you , I will pray that they find out what is causing you so much pain and please try to think positive , I've also though to end my life but with help and support I've got threw it , best wishes xxx

  • Thanks fitzner, you are genuinely kind,and empathetic,Im sorry you have allodynia too.and the ugly fibromyalgia pain .:( the worst feeling is when u feel like u can't even stand or do anything because you paralyzed with pain. I also have difficulty opening bottles cans, my hands are soo stiff and shaky and clumsy with this pain i drop so many things every day. I bet you can relate :D best wishes for you too, i will definately update you on whats going on with me but it is most probably, central sensitization( pain wind up phenomenon) probably my neurons in my nervous system are oversensitized from the fibro and its causing my brain to be on permanent alert and so its sending out pain signals everywhere even from my clothes..:( when theres no need to :( so sad about this its seriously worse than having an illness which eventually disappears, or eventually kills you..,because there is no ending to this.not even bad, just the agony and suffering, but no relief.

    I try to think positive tho, i started taking orphenadrine 50mg too and i will have to work up to 200mg a day, How do you manage your pain? Do you see a pain specialist? hugs, and best wishes I'm so glad you wrote:) xxxxx

  • sad story its awful living in pain you feel like a outsider and not normal anymore i dont have any friends anymore i tend to like my own company now i never get fed always doing something to keep my mind and brain working love reading a long good book or watching a old film on the dvd player

  • You know I understand that completely! It's a very lonely and painful place. You are not alone! We're here for you, I say sometimes half the battle is care and understanding from others. Those you drop off the radar aren't worth the time. You do tend to see the truth in people when things are at there worse. Thankfully they can't understand because they've never experienced it and that is a true blessing.


  • Hi Electriclady And Andrea ! thanks for you replies. It is a lonely place but can learn to live with the pain...even tho its very hard sometimes, we have no choice just to carry on with our lives the best possible way we can.I still have no idea what is causing all of this pain in my body..., and i will only see my neuro again in march 2016 i had lots of tests yet not any answers, jut the diagnosis of neuropathic pain, and possibly fibromyalgia, but no real answers about the causes, and im completely healthy other than the widespread pain syndrome, its awful, and very sad that no one can tell why are we suffering so badly...:/ so strange Are you suffer from same problems as me? I wuld like to hear about your conditions, because i dont know anyone with the same problems. XoXoXo

  • Hello everyone back again I finally got diagnosed with Small Fiber Neuropathy, by skin punch biopsy and they found an underlying cause which is Celiac disease. So I started on a gluten free diet, hope everyone is ok and hope you all find some answers too, it took long years for me too to get answers. I'm on lidocaine infusions atm I can't take the meds due to side effects. And hopefully next year they offer something for my Neuropathy that actually treats it because it's still unbearable hugs Xxxx