Anyone been told THIS??????

Discussion in 'Fibromyalgia Main Forum' started by FadedChina, Jul 29, 2008.

  1. FadedChina

    FadedChina New Member

    I was diagnosed with fibro 17 yrs 44...and I've been through so many tests and meds that I feel like a lab rat, and still it gets worse with each passing year.

    This past yr has been a nightmare that began April 27, 2007
    when I was in a near fatal car accident. I was busted, comatose, sewn together, operated on, and woke up 15 days later to hear I have permanent brain damage!! Having fibro, you just KNOW nothing healed right or painfree. This past early January, I was flippin out from pain and begged my doctor to amputate my legs (Always a major source of pain and tears). He prescibed a high dose of Lyrica which brings me to my question:

    The doc told me that all my pain is NOT even in the muscles or joints, but it is all NERVE damage and it's the nerves that spark the pain, and often not even in the area that is actually hurting!!! Has anyone else heard that their pain isn't muscular or auto-immune, but rather "nerve damage"?

  2. kbak

    kbak Member

    Hi china,

    Yes, that is right for some people. I had a neurologist tell me that. Nerve pain is VERY hard to treat. Last winter I had shingles which has made my nerve pain even worse. I took Neurontin in the past but the side effects bothered me so much I quit it. Lyrica is just a stronger form of neurontin.

    I wish you much luck because it's the devil to deal with. I hope the lyrica works for you!

    Take care,
  3. spmom

    spmom New Member

    I think there is different kinds of pain for people with fibromyalgia, from stiffness, muscle aches to nerve pain/sensations. My primary pain is nerve pain--it is very specific and fleeting. I can't say is due to nerve damage, but there is some nerve regulatory breakdown for sure.
  4. simonedb

    simonedb Member

    a rheumatologist told me that, I had injuries to neck
    no one told me about it hurting in other places though, unless you mean referred pain, a PT talked about that, like from neck to shoulders
  5. Janalynn

    Janalynn New Member

    Yes I have heard that. The pain doc wanted to make sure there was nothing wrong with my back because there are certain nerves that can cause aches/pain in the part of my legs that bothers me most.

    When I hear that Fibro is associated with our Central Nervous System, there is so much involved.
    It all really does make sense, at the same time this whole thing makes no sense.. How do you like that for a "sensible" sentence?
  6. Juloo

    Juloo Member

    I know someone who was injured and developed RSD, which can develop at the site of an injury. It can develop with or without nerve involvement. Please do some research on "RSD symptoms" and read up. You want to keep an eye on your pain situation.
  7. dannybex

    dannybex Member

    I would strongly suggest googling "Andrew Holman M.D.". He's a rheumatologist in Seattle, at the University of Washington who's found that many people with terrible fibro symptoms actually have inflammation of the spinal cord -- often due to a trauma -- like a car accident.

    He's also found some abnormality at the base of the skull (sorry, my brain fog won't let me remember specifically what it was), but it had to due with how it presses against the spinal cord, which increases the pain. And I believe he mentioned that this may in some cases be surgically corrected.

    He spoke at our support group meeting about 4 months ago. You don't have to live here to speak with him, or have your doctor speak with him. He said repeatedly that he's very open to discussing his new findings with other doctors.

    Hope this is helpful,

  8. WhoSaid

    WhoSaid New Member

    I know first hand about fantom pain and itch. They are worse then the real thing.
    In 1997 I had a bilateral mastectomy because I had cancer. Then I had reconstructive surgery with saline filled implants. I still have pain and itch in places I know I don't have. When I get these fantom itches I can about go crazy scratching everywhere else trying to figure out where the itch really is coming from.
    You have to laugh about it or you are going to cry.
    The sad truth is even if he were to amputate your leg that would NOT be the end of the pain feeling like it's coming from there.
    Wish I had something good to tell you at the end of saying that but all I can say is hang in there.
  9. bikrgrl

    bikrgrl New Member

    Fibro is a neurological disorder. He's right the pain isn't in you legs, it's in you head.
    No i do mean it's all you head as if to say you are imagaining it.
    What i mean is, according to doctors fibro is caused by a "miswiring" between the brain and spinal cord. As a result your brain send messages out to the spinal cord telling it to send pain signals to the rest of your body, even though there is nothing there to cause the pain.
    There are many theories as to why this happens, but no one knows for sure.
  10. marti_zavala

    marti_zavala Member

    It rings true for me.

    I am not sure that Lyrica would help but I suppose it's worth a try.

    I had a bilateral foraminal epidural root block to help with the nerve pain in my ribs (too large an area to do individual injections).

    It worked for me and has lasted 3 years. This means I take Ultram for pain and not a whole lot else.

    I still have pain but it is not unbearable.