fibro amongst us

Discussion in 'Fibromyalgia Main Forum' started by tala, Nov 13, 2002.

  1. tala

    tala New Member

    There is an alarming rate in number of women in my small south central town of Kansas that have firo/cfs.
    There are over 20 women that I know personally, with these dibilitating syndromes including myself. And those 20 know of 20 more. We've had to quit working, lost our social life, and living day to day wondering what we'll be able to do tomorrow.
    I wish someone would look into this epidemic proportion in numbers. If I knew who to contact, I would. But I hardly have the energy to stay up through one day, let alone try to find information as to why we have this going on.
    Does anyone else know of such concentrated #'s in one small place?
  2. tala

    tala New Member

    There is an alarming rate in number of women in my small south central town of Kansas that have firo/cfs.
    There are over 20 women that I know personally, with these dibilitating syndromes including myself. And those 20 know of 20 more. We've had to quit working, lost our social life, and living day to day wondering what we'll be able to do tomorrow.
    I wish someone would look into this epidemic proportion in numbers. If I knew who to contact, I would. But I hardly have the energy to stay up through one day, let alone try to find information as to why we have this going on.
    Does anyone else know of such concentrated #'s in one small place?
  3. Kathryn

    Kathryn New Member

    Might be something worth making public, possibly on Unsolved Mysteries or 60 Minutes, or something of that nature. Any sort of favorable publicity can only help all of us in this condition. I have never researched concentrations of fms/cfs in particular areas. I am still too busy trying to learn what I can about the syndrome itself so I can send my doctor to remedial med school. Good luck to you and all your friends.
    kathryn
  4. Shirl

    Shirl New Member

    Welcome to the board. That is such a huge number of people in one area!

    I have had Fibro for 20 years and do not personally know anyone else who has this or CFS.

    I am sure some one will be able to tell you who to contact, but why not your local goverment for starters?

    I have lived in New Orleans all my life, except for the last eight years, I am still in Louisiana but a different area.

    I have never known anyone with any symptoms even remotely like mine.

    You need to start right where all of you are, then have your local goverment take it further.

    Hope you join us here, we do have some wonderful helpful people on this board, and they will be glad to welcome you.

    Shalom, Shirl
  5. Danielle

    Danielle New Member

    I live in oregon and work at the health department. There are around 15 people in my building with fibro. Almost everyone I talk to knows at least one person with this. Two nurses have it here. My boss who was also a nurse was just diagnosed. Another gal in my section also has it. It seems odd to have 3 of us in the same section. It seems there are many of us in Oregon.

    Danielle
  6. tala

    tala New Member

    Thank you very much. I didn't know where in the world to start with this thing. I just know something wrong has to be going on in the part of the state. It's so prevelant.
    Thanks again, I'm going to proceed with this.
  7. tala

    tala New Member

    Hello, I live in a small south central town on the Okla./Ks., border. Recently I've found out there is an epidemic proportion in number of women who are being diagnosed with the above conditions, with myself included. Although mine was diagnosed 21 yrs ago when the aformentioned was hardly heard of at that time. While I can count at least 20 women with this condition, they know at least 20 more. Something is terribly wrong here. Along with that I'm learning the alarming rate of young women whom are sterile with my two girls (young women) who are included. Sleep apnea also runs its course here. I've talked with the local pharmacies that handle the CPAP machine rentals and sales, and they were amazed also of the high numbers. This just staggers the imagination, and I've got to find out why there is such a high concentrated number in this area. Is there any way you could help me? I would be most grateful for any information.
  8. amymb74

    amymb74 New Member

    Isn't there a big cfids/fm research place in Wichita (sp?) I have read in a lot of books/articles etc. that studies are out of a place there. I am sure of it. Check it out. Amy
  9. tala

    tala New Member

    No I didn't know that, thank you for the info. This isn't going to stop untill I get a response from someone.
  10. Mikie

    Mikie Moderator

    CFIDS has long been known to break out in clusters, the most famous being in Incline Village, NV in the mid-80's.

    Love, Mikie
  11. tala

    tala New Member

    I was directed to the National Institute of Health with my inquiry, so again I'll wait for a response and keep everyone posted.
  12. amymb74

    amymb74 New Member

    I just did a yahoo search for 'cfids study wichita ks' & there are tons of links to the studies - the largest cdc study was out of wichita too. check it out. Amy
  13. tala

    tala New Member

    Wow!! Ahead I forge with this subject, content and hopefully some answers, THANK YOU