How Many of you continue to get worse instead of well????

Discussion in 'Fibromyalgia Main Forum' started by carebelle, Sep 30, 2006.

  1. carebelle

    carebelle New Member

    How many feel like this DD only gets worse ? I feel like it just get worse with something new all the time.
  2. mindbender

    mindbender New Member

    Whats' up w/ all this positive stuff/ It seems phony most of the time. why can't we tell the truth? Is it because we don't want be responsible for someone elses depression? I think the truth can be told without some one telling me to stop complaining. Just right now, my family is telling me to get off the internet because their waiting on a call, or we gotta go to the store. can they go w/ out me? yes, it's got to be something else. If my mind would clear up I could come up w/ the answer. If I come up w/ the answer they will tell me again to stop complaining.
  3. Aeronsmom

    Aeronsmom New Member

    I agree with you both, I am NOT getting better at all...infact I have been getting worse and worse as the weeks go by not matter how hard I try to take care of myself.
    take care of yourselves, Love to all, Ann
  4. Kathleen12

    Kathleen12 New Member

    Every time I go into "remission" for a couple of weeks, I always think that I may be getting better. But when the flare hits, it hits harder than the previous one. As the years roll on with this, it gets worse and worse. I think Mindbender has a very good point, though I do believe that there are some who have an actual diagnosis of say Lyme, Hep C, etc which can be treated and therefore do have improvement.
  5. MsE

    MsE New Member

    Part of it is aging, I am sure, but part of it is the same old same old CFIDS stuff: sudden exhaustion, sudden sleepiness, sudden aches and pains; sudden dizziness, etc.
  6. minkanyrose

    minkanyrose New Member

    all the time for me too. nothing seems to help I just try to go with the flow of my body if I can I do if I can't I don't It truely determines my life for me,

    wishing they get a mirical soon or like they said above maraculas cure.
  7. fieldmouse

    fieldmouse New Member

    Getting better is not on my list. Seems like something new weekly...sometimes daily. My flares (what I call crashes) seem to get woorse and last longer every time I have one. Used to last 2-3 days now they last a wee or more. Very frustrating...Mick!!
  8. Marta608

    Marta608 Member

    Personally, right now I'm worse than I was even a year ago - but I have had good times of more energy this year. And I see posts from people like Hayleycole and Mikie who've done such good work on there own behalf and I feel hopeful. I do get frustrated with the illusiveness of this illness! It's like chasing a shadow.

    Still, if I have to feel some way, and it appears that I do, I'd rather feel hopeful.

    I think that, until "they" find an actual cure or more specific ways of treatment, it's all about managing our symptoms. This past week has been a major example for me as I had such a crash on Wednesday. I'm pretty certain it's because of my son's visit and my anticipation. For me, even excitement must be managed. I don't like it but there it is.

    Let's not give up hope.

    Marta
    [This Message was Edited on 09/30/2006]
  9. tlayne

    tlayne Member

    but I still have hope! Hugs, Tam
  10. carebelle

    carebelle New Member

  11. Slayadragon

    Slayadragon New Member

    The problem with CFS is that most people get at least a couple of new weird problems associated with it per year. Mine this year have been associated with yeast (a won't-go-away vaginal infection and a vertigo thing exacerbated by a sinus yeast infection....see my post on "BPPV" if you're really interested). I also made the mistake of cleaning out my grandmother's house after she died.....she lived in an area where there was a lot of factory pollution,, and I think I ended up getting some toxic effects since some of the dust was pre-1970s (when environmental regulations went into effect). That took me a while to clear out.

    It feels like I'm trying to keep my body together with chewing gum and scotch tape. Yes, it's possible to do it, if you put enough energy into it (e.g. looking up info, consulting with the right doctors, buying and taking the right medications and supplements, installing an expensive steam shower in your house). I think I'm gradually getting better. It is very disheartening when a new weird problem comes along to fix. Most of them _do_ get fixed, eventually. But I spend an awfully lot of energy and money fixing them.

    My hope would be that this board would help people to fix problems more easily, since we all hit overlapping ones eventually. That's why it's particularly frustrating when whole threads of discussion are taken off the board with no reason provided by the censors.
  12. sfrazier

    sfrazier New Member

    I don't know if I would say worse but seems the longer I have this DD the more other things I seem to get new. I also think the pain is different. I just know that for the past 3 years I haven't been able to work because of this DD......SueF
  13. NightAngel

    NightAngel New Member

    I was diagnosed with fibromyalgia back in about 1989 (it was called fibromyositis and fibrositis back then) and I've gotten worse instead of better. I do have some days that are better than others, but overall I'm worse.

    Because of how my illness has affected me, and how it's affected other people I know, I've always wondered why everything I read is contrary to what me and my friends have experienced. The books say Fibromyalgia isn't a progressive disease. Why? Why do they say things like that when the majority of people I know have gotten worse through the years?

    Another thing that they say in books that bother me, is that we need to keep moving and stay busy and exercise. On a bad day for me, getting to the kitchen and back to the computer in my bedroom is a major accomplishment and more exercise than I want or need.

    *stepping off soap box*
  14. JimFM

    JimFM New Member

    WELL GANG I HAVE FOUND A GREAT VALUE IN THIS SIMPLE DRINK MIX AND IT'S SUPER TO USE. HERE IS HOW IT'S MADE. BY TAKING A ONE GAL MILK BOTTLE (PLASTIC) AND WASHING IT OUT CLEAN.
    THEN MAKING UP TWO STANDARD SIZE BOXES OF JELLO ORANGE SEEMS AS THE BEST ONE I, LIKE.

    AFTER I MAKE TO THE MIX AND FINAL POINT WERE IT SHOULD GO INTO A BOWL, I DUMP IT ALL INTO THE MILK CARTON AND ADD COLD WATER UP TO THE TOP. FILLS IT UP TO ABOUT 3/4 FULL AND STOPS DUE TO THE FOAM. NOW AT 3/4 FULL I PUT THIS IN THE FRIG TO COOL DOWN FOR 2 HRS. AND EVERY DAY I WILL TAKE A GLASS OF 6 OZ OR SO AND DRINK IT SOME DAYS 3X OTHERS 4X. EACH DAY. IT SEEMS LIKE WHEN I DO MY BODY FEEDS OFF IT FAST AND I FEEL BEST WITH IT'S USE. GIVE IT A TRY AND LET US KMOW WHAT YOU THINK. IT'S BETTER THAN THE OLD MY PAIN NEVER GOES AWAY SPEACH TO COME UP AND SHARE WHAT WE DO TO HLEP THAN TAKE PLACE IN SO MUCH OF THE SAME OLD SAME OLD. LIKE THEY SAY IF IT WORKED GO BACK TO WHAT WORKED WHEN YOU DID FELL THE BEST AND DO IT AGAIN, AND AGAIN.

    JUST THOUGHT I WOULD SHARE THIS WITH YOU ALL TONIGHT.

    GOOD LUCK AND PEACE BE WITH YOU.
    IM NEW YET NOT TO WRITING THOUGHTS.
    JIM FM.
  15. NightAngel

    NightAngel New Member

    Drinking jello daily makes you not hurt?
  16. dragon06

    dragon06 New Member

    I have only been diagnosed for 3 years but it seems that I have had FM since I was 3 years old as we can trace the symptoms back that far. I have definitly gotten worse my whole life.

    I have always been sick and I always get worse. I will have some good days and even weeks sometimes but I definitly get worse as time goes on.
  17. JLH

    JLH New Member

    Unfortunately, I am one of those who keep getting worse; however, it's not just my fibro, it's also with my heart, back problems, arthritis, and everything!! Even though my overall health is worse now than it has ever been, I still try to keep a positive attitude about life and not dwell on my health status and let it overpower me--which mine easily could.
  18. carebelle

    carebelle New Member

    the post about jello what does jello help your pain ? Or just give you something to do?

    Angel I relate to your post.

    Thank all of you Please help keep this bumped this week Its important that we have a place to say those articals are not always true there are a lot of us that do not get better but worse.
  19. karinaxx

    karinaxx New Member



    i have been gradually getting worse or at least to say, new symptoms are popping up regularly and i also had month of doing incredible good and i thought i am going uphill,just to have some new stuff making me miserabel after a new crash.

    i am though still researching! and have come over some interesting stuff, having to do with antibiotic treatments. i have been following some other research boards and one in especially, nicos cfs reaearch board , where Dr.Nicholson also answered to some people.
    i will not go into detail, it would take to long and i really have to sit down and sort it all out. i will post on all of this on another thread, but i really would like to ask the people who are getting worse, if they have had several antibiotic treatments and which and if you were getting markedly worse after the treatment was finished or while?
    so, anybody answering on this post could just quickly add about abx treatments, it would help me figuring some more things out.
    if you dont mind, of course!
    love
    karina

    [This Message was Edited on 10/01/2006]
  20. Worse for me, its one thing after another. Gain more weight , eat less. PAIN ! OMG when does it ever end.