Hi Everyone, new to the boards, but doing research

Discussion in 'Fibromyalgia Main Forum' started by TigerAce, Sep 5, 2006.

  1. TigerAce

    TigerAce New Member

    HI Everyone,

    I just found out about this great site today, and wanted to say hi to everyone who has CFS or FM...Personally, I've had CFS for 10 years, and was formally diagnosed by the Cleveland Clinic in 1996. I have a wonderful doctor there, who truly cares about his patients.

    I was also diagnosed with Mono in 1993, three years before realizing I was going to be diagnosed with CFS. However, I truly believe one of the causes of CFS or FM, could be genetics. I am doing research now on my own, to find out more about my late paternal grandmother, how she became ill, and exactly what her diagnosis was when she died.

    If any of you believe that you have relatives who had or have this condition, please let me know. I'd be really interested in your thoughts. I was only around 12 years old when my grandmother passed away. However, she was a wonderful seamstress, and then something happened.

    From what I understand, she got very sick, depressed, agoraphobic, etc, and had many of the same symptoms that came upon me suddenly in 1996.

    Thanks for taking the time to read.
    By the way, I also lost my long-time sportswriting job, after I was diagnosed with CFS. I had a no-lose lawsuit against my former company, however, my so-called great attorney cost me in the end....More than likely, a buy-out.
    I'd give anything if I could still get some justice over that one.

    But, on to a new day, with God's help every step of the way.
    I look forward to your responses.
  2. rockgor

    rockgor Well-Known Member

    Welcome to the Board. Lots of nice people here to share experiences, info, history, jokes, etc.
  3. StephieBee

    StephieBee New Member

    I have had FM, CFS, MPS and RLS for 7 years now...I am now 25. I believe my FM was triggered by a car accident in 1998.

    My sister and uncle were diagnosed with a mild form of FM. We believe that 2 of my aunts have it, but have yet to be diagnosed.

    I totally believe that genetics plays a role in FM and CFS. I believe that some can have it, but not have symptoms unless it is 'triggered' by and event, such as a car accident. In other words...it can lie dormant.

    Good luck with your reasearch and keep us updated!!

  4. Mini4Me

    Mini4Me New Member

    Hi, Diane, and Welcome!
    I'm new here too.
    I believe genetics are involved in these illnesses. I know my dad struggled with pain and stiffness throughout his 50's and 60's and died at the age of 64 of a strange form of leukemia (they thought he'd gotten it on his trip to China).

    My older sister suffers with scleraderma, which is linked to fibromyalgia. She's 2 years older, and we came down with our illnesses at about the same time a few years back.

    My fibro and chronic myofascial pain seemed to come on with menopause at age 46. I'm now 56.

    Interesting topic. Wish there were more concrete info on these illnesses!
    Best of luck..
  5. silkyblues

    silkyblues New Member

    I have 3 sisters. All but one us has fibro. My daughter has CFS. My grandson is Autistic...connection there with me having RLS and autism.
  6. carebelle

    carebelle New Member

    if you read back into some of my threads we talk about things we think could have given us CFS/FM and yes many think it could come several ways even from family
  7. TigerAce

    TigerAce New Member

    HI again and thanks to all who wrote responses to my post.

    Due to the fact I was very tired today, I just got on now, and am wowed by some of the information written. It's kinda funny how practically overnight, I have read more interesting news about CFS and FM, families, trauma, mono, etc., then I have in over a month on anything regarding both illnesses.

    I really want to start compiling data, but it will take me a few days to analyze all of your wonderful info, and then put it in some type of research form...haha...I know if anyone wants to get into some genealogy research, there are some wonderful links out there.

    I can relate to the 'spells' as my dad's cousin once told me about my grandma, and her doctor had diagnosed her as "she's just all in"....Now, I know what that saying means, but many people just look at me with a stare.

    Well, if someone is all in, they are just plumb tired and exhuasted. So, this prompts me even more to do never-ending research on genetics. I also believe in the trauma theory, and it was very interesting to read about the thymus gland as well.

    I will be back in touch for sure, and keep those posts coming. If we together, as a group, can come up with some concrete connections or similiar symptoms, traumas, etc., it could mean a major breakthrough as to causes of both diseases.

    Also regarding Cleveland Clinic, my doctor there is Dr. Leonard Calabrese, Head of the Dept. of Ruematology, Immunology. If anyone needs a phone number or more info, I'd be happy to help! :)

    Thanks again and thanks for the wonderful welcome.
    Talk to everyone soon.