Poll...How many feel worse as time goes on?

Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Mar 19, 2006.

  1. Lolalee

    Lolalee New Member

    When I was first diagnosed with FMS and later CFIDS I read literature and was told by doctors that these illnesses are not progressive....that symptoms level off or improve.

    I've had FMS/CFIDS symptoms for about 10 years and this past year has been the worst with no signs of improvement. I have tried many protocols...improved diet (no sugar, processed foods or dairy), massage, acupuncture, water aerobics, supplements, prescrip. drugs..........still not getting better.

    How about you?

    Looking forward to hearing from you.

    Lolalee
  2. dragon06

    dragon06 New Member

    I definitly think the dd is progressive. In my experience and in watching my mom get worse (we both have it).
    I have been steadily getting worse over the last 2 years. Nothing has worked so far to make me better.
    I get some relief frm pain pills at times but that is it.

  3. musikmaker

    musikmaker New Member

    I agree with progressive. In the earlier years I would get breaks from the symptoms. If I get a break now it will be a day or a couple of hours and its never completely gone. Another interesting thing is that new symptoms develop over the years so I have more to deal with.
  4. marw

    marw New Member

    I probably had it even before I knew....maybe for years....because the symptoms were so slight.....then it leaped off the deep end about 4 years ago, and has kept getting worse and worse. Every year is worse! Sometimes I have even worried that it can kill me, although I know it can't.

    It is definitely a progressive disease.

    Margaret

    P.S. My doc agrees that this is progressive, only he doesn't call it that....he just says that some people are worse than others. He says some of his FM patients are bed-ridden! THat scared me. I am going to ask him point-blank if it is progressive (if only I can remember to!)
    [This Message was Edited on 03/19/2006]
  5. splinter

    splinter New Member

    most literature says not progressive, but I think it is. Everyone I have talked to about it agree, it gets worse.
  6. PVLady

    PVLady New Member

    I can believe the condition is not progressive, but I am not sure it ever goes away either. I was very sick for several years and in the last two years have gotten much better.

    Most of my improvement is from reducing stress, getting enough sleep, eating right, eliminating "toxic" people from my life, (that was hard) -

    I hope I can continue improving and one day be able to have a more "normal" life. I really do "protect" myself from stress.

    I find needlework and crosswords very relaxing.
  7. AnneTheresa

    AnneTheresa Member

    I'm uncertain of the medical meaning of the word 'progressive'. If it means progressive in the sense of worsening of symptoms and loss of function, then from my experience FMS is progressive However, if the word progressive refers to visible and increasing damage to the bones or fibrous tissues, then I suppose FMS would not be considered progressive.

    I have experienced FMS as progressive, that is to say the condition itself has worsened over the years. Since the onset of my symptoms (1980)and subsequent diagnosis, I've gone from having a few bad days each month to almost all bad days. Very infrequently a good day occurs, but a good day now is what I would have considered a bad day in the past.

    I've gone from teaching aerobics to using a walker for mobility. From working 40-50 hours per week to being unable to work and frequently housebound.

    God bless,
    Anne Theresa

  8. foggygirl

    foggygirl New Member

    I was dx mono in May 05 after surgery. Dx CF/FM in Jan 06. Had little pain before--now every joint & muscle hurts--how depressing.

    God Bless,
    Foggygirl
  9. Lolalee

    Lolalee New Member

    It is really helpful to me to read your responses and know that I am not the only one who struggles constantly with these diseases.

    AnneTheresa...I've always understood progressive to mean to continue to feel the same without improvement or to feel worse with each passing day.



  10. ckzim

    ckzim New Member

    we are not going to die from it...how morbid is that?
    But anyways...that's what he said...like some dieases like cancer...
    Fibro isn't a diease I'm told it's a syndrome...I guess syndromes don't progress???? Well my symtoms of my syndrome get worse and worse each year.

    KathyZ
  11. mom4three

    mom4three New Member

    I am getting worse.
    I am not getting better. I was told you will hit a bad apot and that is it is can't get worse then that.. Yeah right. I have gotten worse 4 times since that.

    I too have tried all the new trends, diets, guai, rx, no rx, pt, no pt, exercise, no exercise, water therapy, no water therapy.
  12. kch64

    kch64 New Member


    I gotten somewhat better since I was first diagnosed.

    I guess time will tell.

    K.
  13. MamaDove

    MamaDove New Member

    My conditions seem to overlap so I wouldn't know which one is actually worsening at any given time, however, if I just go by the symptoms of FMS/CF, I am worse than when it began over 10 years ago...

    I have done several diets, exercise, vitamins, supplements, therapies all to no decrease in my symptoms nor increase in good health...

    I come here everyday looking for the magic bullet...I hope there is one...Yet, of all the people I have ever known with this, they still have it and their symptoms are worse then when it started...

    In my opinion, one condition leades into another and I have no more willpower nor ability health-wise to recover from exisiting conditions nor anything new that comes along...

    Progressive and worsening for me...I am now 38 and feel older than dirt...I envy the healthy but keep going by knowing there are many worse then me ...

    Peaceful days ahead~Alicia
  14. onedaymagpie

    onedaymagpie New Member

    I wonder if others have felt the opposite - who feels they are getting better?
    M
  15. lenasvn

    lenasvn New Member

    I think it progressed in my case because I pushed myself beyond my limits for too long. I had a steady thing going for many years where I could work, have pain and brainfog, and I got slower-but still- work. Now in the past 2-3 years I've pushed myself WAY beyond, and it has made my tolerance level activity-wise MUCH lower, and depending on how far I go, the severity of a "crash" will go with it.
    I have been sicker, yes.
    My mother had fibro diagnosed 20 years ago (Sweden), but probably had it for 40 years, she is not better either, but worse. She also have tried all kinds of treatments for 15 or so years that have not done any good. As she said-"FM is genetic, and my system can't spit out a gene". She is a very nice and positive person and have suffered greatly. I feel so bad pickin' on her when I was younger,,,now I got it too,,,LOL!
  16. lilaclover30

    lilaclover30 New Member

    I have gotten progressively worse. at first I laid it onto the fact that I am now 75---------arthritis has begun, and I have developed Spinal Stenosis. That one doesn't have much to do with age.

    i have done more and more work, tending to hubby. He was off and on in a wheelchair 2 years ago which hurt SO bad. He doesn't do much to help me but I am used to doing for him as he is an amputee.

    Now he will begin radiation 5 days and week for 9 weeks next week. Who knows what they will bring on - i may have to drive some.

    I was telling our "coffee" gang today how my Lunch Bunch deserted me when this all began - thought it was in my "head" and the one that did believe, passed away from cancer 2 years ago.

    Didn't mean to vent like this.

    Back to the question ------YES,it does get worse.

    Gentle Hugs

    Joan
  17. Lolalee

    Lolalee New Member

    Today I told my husband that one of these days he is going to come home and find me smashing the china and throwing things and screaming. I'm so tired of being a good girl and coping so well and stuffing how angry I sometimes feel with this awful illness.

    Joan, You sound like you've had quite a lot to vent about. I'm sorry about your husband. Life is such a challenge for some of us.

    Somebody mentioned this illness peaking at 7 years. I've passed the seven years and I'm not well, I'm worse. Oh well, at least I've got a lot of good company.

    Bless you all,

    Lolalee
  18. lovinlifeinAK

    lovinlifeinAK New Member

    as doctors always say it is not progressive..........ha ha ha...........yes it is. My pain is ten times worse then when I was first dx!!!!!
  19. jole

    jole Member

    I honestly think that as bad as it is, mine may be a little bit better than at the beginning. Don't know if you are actually counting the initial "knock you on your butt" time when I couldn't get out of bed without help, and couldn't talk because I didn't have the energy. Well, it's better than that.

    But the overall day-to-day living AFTER the big whammy let up is probably a little better. For the first year I couldn't hold my grandchildren, and now I can, if even for a few minutes (and pay later). That is my ruler for better or worse.

    I too had a doctor say "you won't die from it, but you certainly will die with it". I believe it's true, but still hope it's not.

    Friends - Jole
  20. coogrrr

    coogrrr New Member

    I am a computer junkie as its all I have done since 1983 hell I took work in it when it started paying!

    I took ill from it in 1997 and yes WORSE nor better! ANy doctor who wants to say its not progressive is the same doctor that A) Doesnt have it. B) Cant DX it properly. C) Doesnt know what the syndrom is about anyway.

    1. its progressive in the fact that it attacks more and more of the body.
    2. Its progressive in the symptoms although some may go some may show up and others may not change.
    3. One of the bes FM docs in the world works ad OHSU and I have spoke to him personally, He says progressive.

    I have to remember to tell myself that the same thing is true with doctors as with my profession, it is impossible to keep up on all of it. So they too have to either take a focus on it or the information they have is outdated as read from a book or article we have all likely read 2x and 1yr ahead of them!

    Sorry for the rant but MAN! I get frustrated with people who dont know what we deal with.

    Coog