PLEASE! I need your input!!!!

Discussion in 'Fibromyalgia Main Forum' started by clueless, Oct 25, 2002.

  1. clueless

    clueless New Member

    Would some of you please tell me about your pain and how it affects you? Mine is a hot burning nerve type pain and I am afraid maybe I am being misdiagnoised. It is`nt a muscle pain as much as the hot nerve pain. I have asked this question before and really did`nt get much input.I am hoping some of you will come to my rescue this time and fill me in on it. Thanks in advance!
  2. clueless

    clueless New Member

    Would some of you please tell me about your pain and how it affects you? Mine is a hot burning nerve type pain and I am afraid maybe I am being misdiagnoised. It is`nt a muscle pain as much as the hot nerve pain. I have asked this question before and really did`nt get much input.I am hoping some of you will come to my rescue this time and fill me in on it. Thanks in advance!
  3. fibolady

    fibolady New Member

    when you described nerve and burning, do you mean at the surface?

    my pain, how selfish!, i will try to put into words that make some sense. first like a cement block is pushing down on my whole body. (this will get better as the day goes forward) remember the indian burns we used to give us other in school, how it hurt afterwards. not a burn, but more sore like a bruise. and sooooo..... fatiqued the muscles.

    hot nerve pain reminds me when i had shingles (yuck) on my belly, now that was hot nerve pain. felt like someone took an iron and placed in on my middle. i did not have blisters, just looked like a big red iron mark and it did spread. it was misdiagnoised twice, before i finally got the correct treatment, very high dose antibiotic. it was a horse pill. by the way shingles can pop up anywhere, limbs even your eye.

    hope this helps you, surprised you didn't get a lot of replies before but you know how it goes on the board, some days hot, some days not!

    warm regards, fibolady
  4. sean

    sean New Member

    You might want to look into Lupus as a possible cause. It may be that you have this also, it is not unusual to have more than one immuno type disease.
  5. Thella

    Thella New Member

    To describe my pain I can give you a visual example. Have you seen the commercial about what Chemo does to a person. The anemia one with the robot moving so slowly. That is me on there. Hurts to move so I move slowly but it still hurts. I think the eyes are not seeing what they should because the head can't turn properly. Every move is like lifting weights and you have very poor small motor skill responses.
    I do not have any nerve pain. Maybe you should seek a second opinion just to ease your own mind.
    take care
    thella
  6. karen2002

    karen2002 New Member

    Clueless....I have nerve pain running from the back of my neck, across right shoulder and length of right arm. It feels like burning in my neck and shoulder. It is a genuine burning feeling, not a muscle ache or pain. By the time it reaches my arm though, down to my hand, it feels more electrical in nature, and its so deep, it feels like the bone is affected.
    Karen
  7. klutzo

    klutzo New Member

    Ever seen someone wring out a wet towel and twist it tighter and tighter? That's what my pain is like. My muscles get so tight that I lose my balance.
    Have you been checked out for possible peripheral neuropathy? Have you been checked for possible Reflex Sympathetic Dystrophy?
    I would ask the doctor about both of those next time I saw him/her if I were you. It may be that your FMS pain just takes that form...we can have all sorts of pain, but you always need to be diligent in weeding out other possible causes.
    Best wishes,
    Klutzo
  8. dd

    dd New Member

    I don't get any burning sensations at all. I have a lot of stiffness and achy muscles. Someone else mentioned the feeling of cement blocks, that is a good description. I feel like I am walking around with a few hundred tied to my feet slowing my whole body down. Sometimes I feel like I have cement blocks attached to my arms too. My arms just feel so weighted down, like I have been lifting weights or something.

    Hope this helps.

    Debbie
  9. jpswife_4boys

    jpswife_4boys New Member

    I get that burning sensation from time to time also. The only way I can explain it is like when your back is sunburned and someone comes up to you and slaps you. That painful sensation left is how I feel. It goes from my back to my shoulders and down my arms. It hurts for even my clothes to touch it. When I'm experincing this in my hands it hurts to have to wash my hands. I don't know what to do to help stop the burning but some time I get a cold wash rag and place in on my skin.

    lots of gentle hugs
    crissie
  10. clueless

    clueless New Member

    I have never had anything so hard to describe! I have had emg`s and been told that I had peripheral neuropathy and then another doctor said he did`nt really believe it was but was from the tail bone being removed. That is when all of this started but the surgeon said there were no nerves there to cause this. So--maybe the surgery was the trigger to start the fibro.The burning pain is deep and even hits the bottom of my stomach.My legs are stiff and my balance is bad. I have never had the headaches but have pain in the bones in the side of my skull, and I am so awful tired. We spend the winter in Florida and I am trying to get packed for maybe the last winter, it just is`nt fair to my husband ,he has had two open heart surgeries and the cold is`nt the best thing for him. Life sure can get tedious can`t it? Thanks for answering my email it gave me some things to think about.