Ok, let's get serious

Discussion in 'Fibromyalgia Main Forum' started by SharonR, Sep 1, 2002.

  1. SharonR

    SharonR New Member

    I have a proposal, there are a lot of really bright people here with very aggravating conditions.
    And someone is always posting a similarity thing, which are really the most responded to on this board.
    How about a group of us individually volunteering to post the thing that seems to be the most unusual about our situation, and see how many responses immolate our own.
    i.e.: age groups, 15/20, 21/30, 30/39, 40/50, and so on.
    What could be the common denominators that spark this DD?
    Is it inherited? Is it a virus. Does it lie dormant like herpes, till something triggers it.
    I know all of this stuff must be here but I for one do not have the time nor energy to go thru everything on this board.
    Broken down into teams may give us the ability to take a look at the "big picture", and not wear us down.
    Each team would be responsible for looking at the answers in their own group of postings, and connecting the dots.
    Then all come together and come up with some sort of synopsis.
    Then take it a step further and cross-link between age groups.
    I am so tired of muddling thru all the fragmented information.
    Who wants to play?
    Smiles
    SharonR
  2. SharonR

    SharonR New Member

    I have a proposal, there are a lot of really bright people here with very aggravating conditions.
    And someone is always posting a similarity thing, which are really the most responded to on this board.
    How about a group of us individually volunteering to post the thing that seems to be the most unusual about our situation, and see how many responses immolate our own.
    i.e.: age groups, 15/20, 21/30, 30/39, 40/50, and so on.
    What could be the common denominators that spark this DD?
    Is it inherited? Is it a virus. Does it lie dormant like herpes, till something triggers it.
    I know all of this stuff must be here but I for one do not have the time nor energy to go thru everything on this board.
    Broken down into teams may give us the ability to take a look at the "big picture", and not wear us down.
    Each team would be responsible for looking at the answers in their own group of postings, and connecting the dots.
    Then all come together and come up with some sort of synopsis.
    Then take it a step further and cross-link between age groups.
    I am so tired of muddling thru all the fragmented information.
    Who wants to play?
    Smiles
    SharonR
  3. jackiec

    jackiec New Member

    I'm game. Just don't know exactly what you are asking----will you "assign" us our topic to follow? Possible topics to track: is there a genetic connection, EBV connection, major flu or other illness, was it brought on after surgery, age when noticed symptoms/current age/age when diagnosed, improper diagnoses first (such as how many were diagnosed as "depressed" before getting CFS/FM diagn.), and how long did it take to find a doctor who believed in you.

    Gosh, this list can go on and on can't it? Someone needs to suggest the main themes we want to look at. Just let me know when we are starting and what you want me to track.

    Sounds like a good idea to me, even if it's just for my own personal "investigations"...might be of interest to some of our doctors who are understanding (tho few and far between they may be).

    Jackie (J.C.)
  4. dlizard

    dlizard New Member

    I understand completely about the amount of reading required to get a handle on this DD but * we are all typing each other all about ourselves already!!!! ANd to boot there are paid researchers doing this... check at some medical centers. I believe in my heart for the time being there are no answers.... I know I've been devoting about 3 hours a day to reading to try to figure out what my doctors can't,.... unfortunately or fortunately we are all very different, therefore the puzzle.
  5. SharonR

    SharonR New Member

    We should have 6 people who extract info,(by Posting) ex: How many on this board are between 15/20?
    After accepting answers for one week, we will chart the age groups.
    Then,if someone will volunteer to graph then we can start tracking by turning the information in to this individual, who in turn can keep the board informed. Some where thru out this process, someone may recognize something.
    The next week the info should change, and the process starts all over again.
    This will probably take about 3 months, maybe longer.
    There are things happening in my life that were not transparent to me when I first got involved with this group, but I am beginning to have suspicious little anxiety's over some strange happenings in my family. past and present. And I see little threads of this all thru this board.
    Understanding that it takes mass consciousness to make things happen, why not use a little synergy and get to it?
    Who is willing, JackieC and I make two, we need 4 others.
    And Dlizard,I have responded to research questions on this board, and read all the postings, but still think there's a vague possibility we could learn from our own research, at least help out ourselves. We simply need to organize our game plan. And it's as simple as responding to a post.
    So who else wants to play?
    Smiles
    SharonR
  6. Wildcat

    Wildcat New Member

    I think it sounds interesting, but would seem very hard to start. Some people just like to get on and let out some anger sometimes, and if it was not your week, or age group, how can we make these people wait until their turn?

    I do think it would be interesting to find out the people in my age group (39) when they were diagnosed, what they think their trigger was, and the meds and things they take, I know that Fibro has many symptoms and age doesn't have anything to do with it, but would be nice, (unoffical medical documentation) of when and how of all of us on this board.

    I know that since I have become older, and wiser, I have learned new things than when I was first diagnosed years ago. I had a hysterectomy at age 26, and 3 weeks after that had another emergency surgery for a bowel obstruction, I just wanted to die! Got and infection with the second surgery, and I think that is when my problems all started. Had shock menopause, at 26! I didn't understand everything that was going on with my health that made me ill and depressed. I would be curious to see if others were in the same situation as me, and how they dealt with it.

    I do understand where you are heading, would be kinda interesting Wildcat
  7. amymb74

    amymb74 New Member

    I think that would be interesting if we could get something like this organized - I don't think responses to simple questions would be a problem - look how long the thread went on when somebody asked where we were all from. Keep us 'posted'......... AMY
  8. kadywill

    kadywill New Member

    Sharon,
    I'm 47, tired, in pain, frustrated, overwhelmed, but glad to be here! My problems all started at age 18, when I was first pregnant.....I was a healthy highschool cheerleader prior, then BAMMMMMMMMM!! I hardly knew what hit me! I TRY to work fulltime, but I take this one-day-at-a-time!
    Let me know what to do with your plan and I will try!
    In health,
    Kady
    p.s. I've always been positive for Eptein-Barr.....connection??
  9. imruggers

    imruggers New Member

    Sharon,
    I am new here but would be glad to help out in anyway that I can.

    Susie
  10. jackiec

    jackiec New Member

    Been giving this more thought over the weekend. It can be overwhelming to chart all the questions we might have, but I still think it will be interesting, if not scientifically accurate.

    I was diagnosed in my early 50s, but feel I've had CFS coming on since about 1969 after Hong Kong flu epidemic (was 20 yrs. old then). My doctor believes my positive EBV is the connection. Just throwing this in as my own personal thoughts connected to self.

    Let me know what we decide to do!

    J.C.
  11. Shoobie

    Shoobie New Member

    If you give me a specific topic, I'll do the research!

    -Shoobie
  12. SharonR

    SharonR New Member

    I am working today and have to pick up my niece at the airport tonight, so time is limited. I will work on this tomorrow, and try and sort out a game plan that makes sense.I think in the first segment we need to gather the age groups. I am 55, so I will start the ball rolling from 50 to 60 , we can break it down in 10 year increments. That way we were all approximately in school at the same time frame. Those of you who are game can choose your age group and identify yourself. Do not post your age on this posting, I will put it out tomorrow, and leave it for a week. I will track the post myself. We just need to start somewhere, and this appears to be the simplest way.
    Smiles
    SharonR
  13. SharonR

    SharonR New Member

    You are all correct, the info is all on this board, it is just fragmented and buried under old postings.
    This will be a concious effort on all our parts to chart the info in a way that we can see it with eyes wide open.
    If we are systamatic then we actually might see something that has been missed.
    Smiles
    SharonR
  14. SharonR

    SharonR New Member

    I will start a new thread asking how many of us are in the 50/60 bracket. I suggest you post here which thread/ age group in 10 year increments you choose to represent. It should be indicative of our ages, so the tracking can be done, and we don't duplicate ourselves. I will wait one week so we can pick up those who have not been on the board daily.
    After a week we will go on to another identity question, just to establish the basic elements involved.
    I promise to start tracking the age business on a chart so we can look at it after the week is up.
    Then someone else can volunteer to choose the more advanced challenges as we get deeper into this.
    But I commit to putting together the charts if we can gather ample information.
    The only way it will work is if everyone will take a minute to post.
    Group Therapy, maybe? But maybe more than that. Let's hope so. If this is not simple enough then please suggest otherwise. Check for the posting coming up.
    Smiles
    SharonR
  15. amymb74

    amymb74 New Member

    are we talking current age or age of onset - big difference since many have been ill for decades!(finding out both would be interesting - easy way to find out how long we've all been ill)
    Also, I hope I am not out of line but I will start the 20/30 age group....AMY[This Message was Edited on 09/03/2002]
  16. SharonR

    SharonR New Member

    Perfect, you go ahead and start it. Keep abreast of your thread, 20/30 and we will compare notes at the end of the week.
    Smiles
    Sharon
    [This Message was Edited on 09/03/2002]
  17. JaciBart

    JaciBart Member

    I am a 41 year old former professional, I have an incredible husband who has a heart condition at 39 yo, he had a pacemaker surgically implanted on May 1 of this yr. Fourteen days after the surgery we discovered at home one evening in a book that his condition is "progressive" with no cure or favorable outcome, his Dr confirmed this to us on the 15th, next day. May 18th we were at the horse races and my husband defibrillator went off 7 times, it was incredibly painful & scary for us both. They don't tell you it can go off more than once, we thought he was dying. He got airlifted to the nearest Heart Center, it went off 4 more times the next morning. Apparantly the device got reset somehow by accident on the 15th at the Dr appt from 185 on the high end to defib at 125, oops. They were sorry, family had flown in, in our mind it was the end. I have never gotten over it, I am no longer working as of June 1, I am in a constant flare, I have maybe had 4 good days since, my life is destroyed, or at least my life as I knew it. We have an 8 yr old son, I have herpes, he does not....thank God. I now have everything involved with Fibro except migraines, everything else that I have read on this site (and I think I have covered it).
    That is how I got this DD, now my life consists of self pity in between Dr appts, I am awaiting to see if I have lupus also.

    Jaci
  18. amymb74

    amymb74 New Member

    I'm on this board quite often - especially during the week - I will do as much as you need - just let me know.......AMY
  19. SharonR

    SharonR New Member

    Gotcha! We will touch base in a week. Thank you so much!
    Smiles
    SharonR
    [This Message was Edited on 09/03/2002]
  20. SharonR

    SharonR New Member

    Let's get the age thing over with and then we can each take a week and choose a relevant subject, i.e.: geographical, whatever, we will pick it apart logically, till we uncover some answers.
    There are some brilliant minds on this board.
    Smiles
    SharonR