a new way to describe fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by Sheila01, Oct 9, 2006.

  1. Sheila01

    Sheila01 New Member

    I dont have fibromyalgia, but attending back in October of 2003(I think that is the year) the 7th IACFS conference in which doctors from all over the world came and patients were invited to this one, it was very informative. Something concerning fibromyalgia I have only heard about at that conference, and never heard aobut it again, was a cross sectional view of an area of the muscle affected by fibromyalgia. It showed what looked like an empty area of a small circle. A lesion? I dont remember what they called it, but I know if you go you do an internet search and type in 7th IACFS cfs/fm conference, they have an entire listing/ papers talking about everything that went on there. All the studies done, some thereapies that benefit, etc. IT is on the IACFS website. Was really a great and informative three day conference.
    [This Message was Edited on 10/09/2006]
  2. llama

    llama New Member

    Hi sheila01,

    I've never heard of any of this info before. And to think that it was known 3 years ago! Don't want to sound paranoid but I swear it seems like certain people/agencies don't want certain information to be available to the general public.

    I'll definitely check this out!
  3. where is this lesion? I have been experiencing I think are dents in my legs Ruthie
  4. MsOnlyMe123

    MsOnlyMe123 New Member

    I did see this a few weeks ago. I was so angry at everyone at home, including boyfriend and Ma, up in Boston, I'm in Florida. Of course, I'm not angry anymore and or course I did not tell Joe and Ma how I felt. The both of them would die for me. If was just my first reaction of hurt, just knowing, maybe, just maybe, I would of been able to go to a real good thing and maybe understand alot more about Fibro. and damn it, who get help me get rid of the excruciating PAIN, after 9 years.

    At that time, I think I was healthy enough to fly up, but no one from back home told me about it. Alot of people read the daily newspapaer that this conference was being held. They said they did not see it and if they did of course, they would of told me right of way.

    There was an e-mail address on this site of the 7th IFCAS saying for $29.95 they would send you a whole day of the conference of the city you would like. I think the others were held in Atlanta and maybe Cincinatti, I'm not sure.

    Instead of e-mailing I did call the number and asked to speak to the women who gave her e-mail address to order this DVD or CD, don't remember. Anyway, the person who answered the phone, (it was a toll free number in Texas), said he did not know of anyone by that name and also said there was no such tapes being mailed out. I questioned him to death, and he would not let me speak to anyone else. I have a notebook with all that was said. He went on telling about the whole expereince that one would have by making an appointment at the FCC and approximately the $$$$$$$$$$$$$$$ it would cost.

    I asked him to please send me information on the FCC so that I would better understand the process. I never recieved anything. One day, I will call again, but there are just to many calls infront of this one to make. I would of loved to be there or atleast get the tape.

  5. LCasey

    LCasey New Member

    People that have fibro have shown to have less mitochondria in their cells. The mitochondria are the power house of the cells. Skeletal muscles are affected from this severly therefore less energy. I am a therapist and have therefore studied this extensively. The entire skeletal muscular structure is affected by fibromyalgia, hence the exhaustion after doing only a little work and the fatigue. My mother has fibromyalgia, my sister is older than I am, and has been dx as early stages. I was dx in 1998. Therefore, I do believe there is a genetic disposition to fibro among other factors. Cross sections of muscle tissue and further observation under microscope show the decrease in mitochondria.
  6. Sheila01

    Sheila01 New Member

    the conference was in 2204, not 2003. jsut to let you know. Now i remmeber it was found on some sort of scan, these circular 'gaps'.
  7. Anne_at_FibroFix

    Anne_at_FibroFix New Member

    what part of florida?