Does anyone have this?

Discussion in 'Fibromyalgia Main Forum' started by karmageddon, Dec 27, 2002.

  1. karmageddon

    karmageddon New Member

    How about this symptom: am I the only one?

    "Vestibular system abnormalities: difficulty orienting self in space"

    When I read "difficulty orienting self in space", I gasped. I could never put this into words before, but this is exactly the way to say it. It speaks to what it is like to live without feeling right or being confident of who you are, or as my ignorant parents might put it: "Do you even know which end is up?"

    This is an inner ear "tweaking" caused by the autoimmune system out of control, as far as I can tell...

  2. Mikie

    Mikie Moderator

    Read the post about clumbsiness. All my life, I have had spatial difficulties. The worst is clanging a glass against my two front teeth. Ouch! They've been bonded and I don't want to knock the bonding off them.

    I'm all beat up from bumping into things and falling off things. It's part of our illness.

    Love, Mikie
  3. Kim

    Kim New Member

    If so will you describe it. Mine is not like fibro fog or lightheadedness. Been through vestibular testing, MRI's, Ct scans, etc. They are still running tests!!!! I am still dizzy.
  4. susabar

    susabar New Member

    I get dizzy so easily, have always hated amusement rides... hate when kids run around in circles, that kind of stuff... also I get "car sick" real easily... I have to sit up front and cannot read or do anything but look ahead.... I am often klutzy or clumsy, have been my whole life...
    Good Luck sue
  5. LisaMay

    LisaMay New Member

    I never knew it had a name! I have been really suffering in "space" and experiencing some wicked dizzy spells along with killer headaches. All the tests show normal. This is not normal!! I'm going to see an ENT next month. Maybe he'll have some answers.

    Struggling for a better day. Lisa
  6. Kathryn

    Kathryn New Member

    The nurse practitioner at the OHSU fibro clinic says it could possibly have been caused by the original whiplash that produced my fibro. She wants me to get tested by an ENT to determine whether there is inner ear damage. from what I have been reading, this is a common occurance. It can be quite scary at times.
  7. 1Writer

    1Writer New Member

    I have CFS and I have had problems w/dizzy spells and lightheadedness and feeling what I call "spacey" for years. I always thought it was inner ear and I've never had that particular symptom checked out...guess I will...can't hurt. Sometimes, even when I'm writing, I have trouble putting the pen to work (I'm a writer)or typing what I'm's really hard to describe...sort of my brain feels disconnected from my hands...I don't that what you mean?

  8. karmageddon

    karmageddon New Member

    Thanks, all... I expected so.

    I can't say why I am in my viewpoint, but this is yet another symptom of mercury poisoning. I was married to a chiropractor and in the mid 80s, he was showing me trigger points and I was in tears with the pain, and shocked. I bet most of you would agree that global pain is different than poking a single spot and so I didn't expect the trigger point hot-poker stuff.

    I was truly alarmed and asked him what the hell was going on with me and he didn't know.

    Less than 24 hours after I found out that fibromyalgia has been identified and I are one... right down to the ridges in my fingernails and that hot spot on my head... I read the report on the connection between mercury and autism and I effen flipped out with "OMG, that's it!"

    I was born in 1945 and autism wasn't even in the dictionary and my family thought I was just evil incarnate all of a sudden after being such a happy kid. I was kept in the basement as much as they could get away with.

    So, I reacted to my vaccinations within months, had one hell of a life and now have every symptom in the classification of fibromyalgia. I have little choice but to acknowledge mercury poisoning.

    I have lost 99 percent of my fear and anxiety almost overnight. I am still hitting spells of incredible anger that I was taken out of life so early, but then I realize millions of people were, too.

    I recognize that there is no "official" cause, but after four years of research to come to this diagnosis on my own, as noone else could help, I'm setting up my web site from this perspective.

    I'm still trying to find anyone who can tell me how one single person could have kept the mercury injected with vaccine from migrating to the brain and setting off the immune system and a long, uncomfortable and painful life and death.

    The implications are so staggering, I have met with a universal reaction of shock, but not a single person has disagreed.

    I will be putting up this avenue of experience at by the end of January, hopefully.

    I am scheduled to lose 6 teeth filled with amalgam (more mercury) in hopes that I can gather some strength and lighten the load on my body.

    I still can't find a doctor, but I'm doing the right stuff as far as I can see for the moment.

    And, yes, I get the dizzy thing too. What I was really thinking about with this inability to locate myself in space was the constant uneasiness in life. This poisoning has caused me to doubt myself when I needn't have. Because I didn't know what was wrong, I had to at least consider what other people were saying about me. <shudder>

    I sound a bit heavy at the moment, but I have a rough several months coming up, losing my teeth and healing for three months before I can start fighting with appliances. Since mercury poisoning is not acknowledged, I will have a battle to get the least toxic stuff wired in my mouth, and I'm considering just not getting any hardware, but it is very unsettling at the moment, so I'm not too much fun right now, but basically I'm tons of fun!

  9. dlizard

    dlizard New Member

    and occasionally have related it to an out of body experience.... I had one of those too when my hemoglobin was 2... ( that wasn;t in my head LOL ) but while I feel like my clumsiness is increasing the spacey feeling has always been there.... its much worse when I try to take antidepressants.... Good luck! < and ya'll know that song on the radio now,,,, something is wrong here and I don't belong here.... I feel that way about being on earth!>>
  10. karmageddon

    karmageddon New Member

    I can relate... to the "all my life" bit.


    But I've got my headphones on and I'm listening to classic rock: "...what a long strange trip it's been".

    I'm definitely not alone! LOL...

    (got my piccy posted, finally)