So What Exactly Are Our Chances for Recovery?

Discussion in 'Fibromyalgia Main Forum' started by Hippo, Sep 4, 2002.

  1. Hippo

    Hippo New Member

    I watched the film "I Remember Me" on Sundance yesterday. At the end of the film, they said something like 4% to 12% of patients recover. Is this correct? If that's the case, you would think there would be a lot more patients than there are. Any info would be appreciated.

    Hippo
  2. Hippo

    Hippo New Member

    I watched the film "I Remember Me" on Sundance yesterday. At the end of the film, they said something like 4% to 12% of patients recover. Is this correct? If that's the case, you would think there would be a lot more patients than there are. Any info would be appreciated.

    Hippo
  3. majic

    majic New Member

    waiting to hear the answer to this. majic
  4. Shirl

    Shirl New Member

    I have heard of a few remissions, misdiagnosed, but no cure as yet.

    Shalom, Shirl
  5. roro

    roro New Member

    I still have hope that I will recover. i am pretty sure i have soemthing that can be cured. i have herpes and hepatitis C and I think these are the diseases causing my problems.
    It depends what the cause is. there are so many theories on what the causes are of this DD. Some think it is an unknown undetected virus. If that is true, then someday they may find it and be able to cure it.
    Also, MANY people are misdiagnosed. there are SOOOOO many rare diseases that mimic this DD, dont give up. Get tested for EVERY possible one of them.
  6. sybil

    sybil New Member

    my rhemy told me there was no cure,because nobody has found out the cause yet!
    from what i gather,some people have periods when they feel capable of leading a normal life,then they get a flare and it's back to the beginning again.

    sybilxxx
  7. Wildcat

    Wildcat New Member

    I know that there is no known cure for this DD, but I don't lose faith in believing that someday I will be "somewhat normal", I want to learn so much about my condition, and about myself. What makes me feel the worse, what makes me feel better, what meds don't work, what meds make me feel ok. I figure the only cure I have on my side, is knowledge about what makes "ME" feel better!!!

    I had a spell where I was in somewhat remission, I felt GREAT, but in the back of my mind I knew it was not going to last, BUT....I made the best of it while it lasted!! I look forward to those times, and when they hit..I am ready!!! (It's the only thing I have, if not I would go insane!)

    Wildcat
  8. ohmyaching

    ohmyaching New Member

    Because there is no marker by which you can make a definite diagnosis for this disease it seems logical that there will be a small percent of misdiagnosed patients. Perhaps these people represent the small amout of patients who recover according to your statistics.
    I have heard of no accepted cure. I have heard claims of people recovering, but am uncertain of whether their recovery is long term. It does seem that people can get better and there are many claims on this board to that effect. I always like to look at what people have done who claim to be cured. For me, looking at what has been said to work seems the best way of finding solutions to problems that don't seem to have any answer. (But of course this can also be dangerous if the claims are wrong and the procedures harmful.)
  9. herblady

    herblady New Member

    i haven't heard of any cures yet. cindi
  10. Cactuslil

    Cactuslil New Member

    will continue to be revealed that will at the least lead to better treatment, more precise treatment, quicker diagnoses so that secondary ailments such as arthritis, collagen disease do not cloud the diagnostic process.

    There are precursary events such as IBS that perhaps could signal to a doc to watch this patient for signs of FMS/CFIDS. By the time some of us hardheads cough up that we have a problem, a few years sometimes pass. It did for me. I had to mess around until it was obvious to any and all who saw me something was profoundly wrong beyond menopause!

    Early diagnosis and palliative treatment may one day be the state of our being and all this other "stuff" we all kick around will be of the past.

    After what I read about Early Daytime Sleepiness and treatment for it raised my hopes that perhaps I can lead a different but valued life. Perhaps I really will get to camp overnight with my now ten year old son!

    Right now research is going at such a rapid pace I think they don't even know where it will fall and probably fall across many body systems i.e. immune, endocrine, neuro. How exciting! Love CactusLil'
  11. ohmyaching

    ohmyaching New Member

    I would love some numbers. Do you (or anyone)know where to find them?

    How many people were diagnosed with this disease last year?
    How many people were diagnosed with this disease this year?
    At what rate has this disease been increasing (if any) each year?
    How many people are receiving disability for this disease?

    I don't think we can really get people to understand the extent of this disease until the numbers are made known. If it is as extensive as I believe it is then it would seem people might take it more seriously.
  12. selma

    selma New Member

    I'm Waiting Too !!
    I have hopes and prayers that There will come an answer soon.
    Meanwhile, we're all here doing our own research and understanding. Thank-you all AGAIN.

    As soon as one knows we all will. GOD BLESS.

    Love, Selma
  13. klutzo

    klutzo New Member

    These are figures I have read in various places, but I find some of them VERY hard to believe. They are NOT my opinions, but things I have read by others, so please don't jump on me if you don't like them!......
    About 25% of CFS patients recover within the first 4 yrs. After having it for 5 yrs. the rate of recovery drops to zero. After 10 yrs. with CFS, the risk of getting four types of cancer rises significantly, and immune problems abound. 66% of very close relatives and friends of a CFS patient will have blood markers, like reactivation of EBV, and will develop it within 10 yrs. after first exposure to that patient.
    About 23% of FMS patients recover. About 48% of FMS patients either cannot continue working full time or have to change their jobs. About 16% are completely unable to work and 11% are getting disability. 50% of children of a mother with FMS will eventually get it.
    Now, for my opinions, based on what I've seen in 17 yrs. The only people I know of who recovered from CFS are Stevie Nicks and Cher. I only know one woman who is fully recovered from FMS, and that is only as long as she adheres to a program of flex-time, part-time work and strict avoidance of wine and wheat. My Rheumatologist says he has never seen anyone recover from FMS. Of course, maybe they just never tell him and never come back!
    I still believe FMS can be beaten, because I have to believe it to go on. I don't know enough about CFS to say anything, but being positive can't hurt.
    Klutzo
    [This Message was Edited on 09/05/2002]
  14. TiredbutWired

    TiredbutWired New Member

    I do not want to discourage anyone but I guess we hear different things all the time.My cfs/fms specialist told me that after having cfs over 6 years the chance to recover gets slimmer but it still happens and he said he had 2 at 11 years and one after 22 years with cfs.When he says recover he means 80%.He also said which I would be interested in some feed back that a year to 18 months is about as bad as the cfs will get.I know he and many other doctors are working on many things and are PASSIONATE about putting this puzzle together.We will always have to take care of ourselves and some of the people that got ampligen had to go back on it because they tried to go back to there crazy lifestyles.He said the people in lake Tahoe recovered in about 2 and a half years,they never did figure out the cause.Also he told me some stories where this thing just went away one day.But remember in the movie you referred to the ladies from punta gorda 1956 said if they could make it back then with not even having a name for what they had we can make it.Imagine how the doctors then would have been.Love,Tracey
  15. amymb74

    amymb74 New Member

    Just my experience but at 1 or 1 1/2 years into cfids was the good days for me (didn't realize it then) I hit my worst 5 years into it & haven't gotten any better (PWC for 9 years now). However, I don't think that is the norm, I always heard you reach a plateau and stay basically the same - darned if I know - just sharing my story.......AMY
  16. TiredbutWired

    TiredbutWired New Member

    That is what I am afraid of.I am so sorry for you.I am over a year and I am coming out of a relapse that has been the worst.I keep thinking I hope I am at the last stage and will never get worse than this.But this certainly is a mystery illness.Love,Tracey
  17. ohmyaching

    ohmyaching New Member

    I've had this disease long enough not to be easily discouraged by it any longer. I've tried some things that show a promise for improving how I feel and I'm working on getting them to work for me. There's a lot to try. I've also done a lot of research and there is some pretty amazing stuff in the works. I would encourage everyone stay positive.
  18. ali-may

    ali-may New Member

    In a recent issue of Time magazine (Australian edition), it was stated that the average length of time that a person has CFS is seven years. (Okay, so that means I only have to put up with this for two more years... hmm)

    I could type out this article if anyone wants to read it.

    Alison
  19. ali-may

    ali-may New Member

    What is ph? Is that something like acid levels in your body?

    I would like to learn more about this!

    Alison
  20. sybil

    sybil New Member

    depends on what sort of virus it is and whether or not it attacks your immune system.
    i have a close friend who has HIV.he takes a cocktail of drugs,steroids,Interferon,along with other stuff,i know he takes about 25 pills a day and is closely monitored by his local hospital.he has had HIV for about 5 years and so far it hasn't developed into AIDS and i truly hope it never does,because he is like the brother i never had.
    but he leads a totally normal life with a potentially fatal condition.he is a vegetarian and takes regular exercise,which is supposed to be important with HIV.

    my point is there is no cure as yet for the HIV virus ,but my friend can lead a normal life as long as he gets the expensive drug treatments.if he didn't take his meds,he would probably develop full blown AIDS.

    i believe people can have a good quality of life with our numerous DDs,it is just finding what can keep it at bay,until they find a cure,that seems to be the hardest part,

    sybilxxx
    [This Message was Edited on 09/06/2002]

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