Not everything is FMS/CFS related......

Discussion in 'Fibromyalgia Main Forum' started by twjen, Dec 17, 2002.

  1. twjen

    twjen New Member

    Just wanted to say that I dont think every thing is fms/cfs related, but some "normal" things everyone gets are harder on us on top of having the fms/cfs. For example, we can get a cold/bug, headache, muscle strain, blue day, toothaches, hang nails, etc. on top of our DD and doesnt always mean the fms caused it, but I do understand completely that these things are harder on our already messed up systems. If anyone can get Montel, or Oprah, or Dr. Phil to do a show on fms/cfs, they should stick to the true basics and nature of illness, without adding every little insignificant complaint that arent nessisarily fms related. But also let people know that even the everyday things that alot of people get are just that much harder on us because of our illness. I think we will get more attention if we stick to the true basics and nature of our illness. I know its somewhat different for everyone, but the nasty basics are mostly the same. I dont want anyone to see us as complaining about everything hypo's, as Ive gotten that enough by a few unknowledgable creeps. Just wanted to voice this and see what you all think. Have a great day, and thanks to all who have been here for me and helped me with your support. Jen
    [This Message was Edited on 12/17/2002]
    [This Message was Edited on 12/18/2002]
  2. Annette2

    Annette2 New Member

    I agree with you. I think that every time something is wrong, a lot of us automatically assume it's from FMS. Well, it's not always. But I also agree that when something is wrong it can be harder to deal with on top of a body that's already wracked with pain. We don't all have the same symptoms with many things - but we do have the basic pain, fibrofog, sleep deprivation, etc. I know that I have to be careful that I don't attribute everything to FMS. Sometimes, though, it's hard to know which is which. Right now I'm recovering from a hysterectomy and I have a lot of fatigue. Is it from FMS, the surgery, or anemia? How do I know? Well, these are my thoughts. Thanks!

    Annette2
  3. Mikie

    Mikie Moderator

    Should be checked out by the doc and we should not assume they are CFS/FMS related. By making the wrong assumption, we could miss a serious condition.

    Love, Mikie
  4. HOUSEOFBLUES

    HOUSEOFBLUES New Member

    But, I noticed that since i've been diagnosed with Fibro
    that every time I get a new symptom, the Doc's are the first ones who automatically attribute it to the Fibro.
    That's why i have such a hard time with them to "see past" the fibro and to look at "other" reasons.
    It's very difficult......

    Love,
    HOB
  5. twjen

    twjen New Member

    I am in ALOT of pain also with the symptoms of fibro. and also cognitive issues. What I mean is this, THERE ARE TOO MANY PEOPLE WHO COMPLAIN ABOUT THINGS ON THIS BOARD THAT ARE "NORMAL" THINGS AND NOT FIBRO RELATED! It is fine to share these also, but not to assume that everything is fms related and confuse the issue! FOR INSTANCE, I READ POSTS ABOUT PEOPLE BEING SENSITIVE TO TOOTHPASTE, BIG DEAL, ALOT OF PEOPLE ARE SENSITIVE TO TOOTHPASTE. AND THERE ARE OTHER POSTS LIKE THIS THAT ARE UNRELATED AND HINDER OUR FOCUS, RATHER THAN HELP US IN BEING HEARD BY THE REST OF THE WORLD!
    IM JUST SAYING WE NEED TO STICK TO THE LARGE ARRAY OF BASICS WHEN EXPRESSING OUR ILLNESS. WE CAN DISCUSS OTHER PHYSICAL PROBLEMS ALSO, BUT NOT HAVE TO ATTRIBUTE EVERY LITTLE THING TO FMS! LIKE I SAID, SOME "NORMAL" THINGS ARE HARDER ON US THAN THE NORMALS, AND I UNDERSTAND THIS. AND YES I AGREE THAT NEW SERIOUS SYMPTOMS SHOULD BE CHECKED OUT!
    BUT NOT TRIVIAL LITTLE THINGS SUCH AS HAVING POST NASAL DRIP FOR A COUPLE DAYS. I JUST WANT OTHERS TO BE AWARE THAT WE KNOW THE DIFFERENCE BETWEEN OUR ILLNESS AND NORMAL EVERYDAY THINGS THAT ALL... PEOPLE DEAL WITH, SUCH AS CATCHING COLDS, ETC. I AM NOT!!! DOWN PLAYING FMS SYMPTOMS BY ANY MEANS AND FEEL SLIGHTLY OFFENDED MYSELF THAT SOME CANT UNDERSTAND WHAT MY POINT IS! IF WE WALK AROUND WhINING ABOUT EVERY LITTLE - (REPEAT) LITTLE THING THAN THE OVER ALL BIGGER ISSUES WILL NOT BE HEARD AND WE WILL CONTINUE TO BE IGNORED AS BIG HYPO'S. I HOPE IVE EXPLAINED MYSELF BETTER.
    PLEASE UNDERSTAND I AM SICK ALSO AND WANT OUR ILLNESS TO BE RESPONDED TO AND STUDIED BETTER SO THAT WE CAN FIND MORE ANSWERS TOWARD BETTER TREATMENT OR A CURE. I DONT THINK WE WILL GET THAT BY COMPLAINING ABOUT HANG NAILS, BUT RATHER STICKING TO THE TRUTHS OF THE ILLNESS. THANKS AGAIN, GOD BLESS YOU ALL! JEN
    [This Message was Edited on 12/18/2002]
    [This Message was Edited on 12/18/2002]
  6. lucky

    lucky New Member

    I totally agree with you. Lucky
  7. theimpossibleflute

    theimpossibleflute New Member

    ...people get scared. I am 19..was only diagnosed 6 months ago. I am basically alone in dealing with this; my family, if I say anything, hovers and fusses and basically gets in my way. My fiancee left me becuase of this DD. With nowhere else to go, people turn to this board. Especially when the disease is still "new," people start wondering and get terrified that their body is just falling apart. I understand the amount of info. that goes up on this board everyday. I understand many of you have been suffering many, many years and have, quite honestly, become bitter, but please have a heart..and a little patience. I AM STILL SCARED, TOO. I have no idea what my future will hold anymore. I don't know if I will still be able to attend med. school after college..or even attain a career. When people get scared, they overreact. Let them vent and, if necessary, let them know gently that they might be a little paranoid. But at least take the time to love them gently. Putting angry posts that make people feel inadequate doesn't help anyone. Sorry I had to join in that number...You waste more energy responding than reading a post and letting it slide by...

    Happy holidays, everyone!

    Abby
  8. joyof3

    joyof3 New Member


    You said it so nicely Abby.

    twjen i think i understand what you are saying. I hope that we all can undrestand what you are trying to say, I hope that no one feels hurt by your words. the way i see it no one was ment to be hurt.


    stephanie