I hate to sound negative about

Discussion in 'Fibromyalgia Main Forum' started by Aeronsmom, Oct 25, 2006.

  1. Aeronsmom

    Aeronsmom New Member

    why is it all of a sudden we are getting new people on here claiming they are "healed" or "cured"? I myself welcome everyone on this board with open arms and able to shares experiences and stories with each other.

    but there are beautiful people on here who have had this DD for years and years with no relief or cures or have been healed..NOW we have had several people just joined only to say "I'm healed" or "I'm cured". This is a disease that even Dr's really don't know how to treat...how can anyone claim that they cured themselves?? I'm soooo sorry that I am feeling negative, really I am...... maybe I'm just a negative person in so much pain.

    love to all, Ann

    p.s. I won't be surprised if I get flack for writing this or if this post gets deleted.
    <br>[<i>This Message was Edited on 10/25/2006</i>]
  2. huska

    huska New Member

    Hi, I understand what you are feelling. I have the same problem with the pain and I know it's very dificult to handle it every day. I really don't know if anyone is healed or not, because I never saw a post saying that, but I'm new here. As you said, Drs. don't know how to cure this. I have to tell you I already tried lots of things with no luck, but I always hope that one day they find something to heal us. Until then we have to think positive, I guess..............

  3. CanBrit

    CanBrit Member

    I've been in a flare most of this year and I think my sense of humour is somewhat diminished.

    I too get rather suspicious when I hear "cured". I'm sure if someone held the magic key to curing our conditions (FM, CFS, etc) we wouldn't be hearing about it just from the "curees".

    All the best

  4. Marta608

    Marta608 Member

    I think that most folks here have CFS and others have other things. When the ones with other things finds the right regimen they're "cured".

    Regardless of what they have I'm always glad to hear when someone has recovered - but before you call me Pollyanna, I have to say that it still bewilders me.

  5. Callum

    Callum New Member

    As someone that has not been cured or healed, but has enjoyed much better health the past few years, I can understand your frustration.

    I guess the only parallel I can draw is to other diseases. Why do some people do so well on certain HIV drugs, and other people don't? Why do some people contract HIV, but after 20 years still haven't developed AIDS, while others get sick within months after initial contact and die quickly?

    Why do some people enjoy long remissions with diseases like MS, while others suffer all the way through?

    Why did my paternal grandmother, who smoked for 45 years and drank like a fish, live to 94, while my maternal grandmother, who never smoked and eschewed alcohol, died at 42?

    Why does Prozac help some people, and not others?

    Perhaps the frustration is multi-dimensional? It's easy to feel that every time someone says "I did so-and-so, and I'm cured", we're doing something wrong if we're aren't. Also, so many of us have tried so many different things to make ourselves well, I think there is a kind of "hope-fatigue" that can happen.

    Also, no matter how well-adjusted we are as individuals, I think that it is easy to fall into the trap of "what is wrong with me? If so-and-so has gotten well, and I haven't, what have I done to deserve it?"

    Of course, the answer is nothing. It isn't a punishment; it only feels like one.

    There was a friend of mine I envied. He always seemed to win things like drawings & lotteries. He'd win at bingo. And I'd think, "When is it my turn? When do I get to win the drawing?" It could make me feel bad. And that was over something as shallow as a drawing!!! It wasn't about my health! About my ability to do all the things I used to do.

    Just my thoughts...

    My best to you,


  6. millennia

    millennia New Member

    When anyone says that they have been cured of fibromyalgia (or they someone who was cured), the first thing I think is that they never really had it, they had probably been misdiagnosed. The second thing I think is, they are trying to sell anything.

    I would love for there to be a cure, but I hope that I'll find out I've been misdiagnosed and that I actually have something that can be cured.

    I agree that we need to take those posts with a grain of salt. Though I'm not above checking out what they have to say and trying it if it is reasonable and doesn't require a product that can only be obtained from one specific site.
  7. carebelle

    carebelle New Member

    these people .I think those of us who have had these DD's for any period of time know no one has found a cure. In fact if a cure is found we will hear about it all over the place probably more then we have even heard about the DD.

    The first thing I do when I see these claims is to click on their name and see how long they have posted .The only reason I do that is because if they have been on here posting that maybe they have been doing something that has been helping them and something I might want to try.

    other then that I think most of us already know there is no cure yet. Your sweet to worry about this and I hope your pain becomes less .
  8. Gothbubbles

    Gothbubbles New Member

    I've been sick for so long that if someone has a "cure" that I haven't tried and it isn't dangerous, I'll probably try it too because I want to get better so badly.

    I agree though, some people probably do not really have CFS if they're sick for "A few months and then are cured". It could just be spontaneous remission from a non-CFS disorder.

    I also read about people who say "I'm so terribly sick" then say "I jog everyday, dance, swim, and work full-time."
    I try not to be bitter, but how can someone with CFS do this and say they're still sick?
  9. Lolalee

    Lolalee New Member

    Well said! Amen!!!

    You really got to the core of it, as far as I'm concerned...and I can only speak for myself. Yes, we are all individuals and mostly fragile. When someone is "cured", it is not logical to expect that others will have the same results since there are so many variables. If this were a simple illness, none of us would be struggling. Good for those that are better!! I'm happy for them and one day I will be one of them. But, I've got to do what feels right to me. Most of us have already tried so many things with disappointing results.

    I have a friend who does not suffer from a chronic illness and her energy has improved by taken a certain supplement. She has given me brochures, a CD describing the supplement (it' one of those multi-level marketing companies)and countless times she has urged me to try it. The last time I spoke to her I was on the verge of trying it just to get her off my back. No matter what I say, she just won't accept NO. Well, I don't know why I got into all that, except to say that people get well and they want to talk about it and want you to feel well, too. But we don't all have the same results.....it's not that simple.

    Anyway, Callum, you said it better than I.

  10. Aeronsmom

    Aeronsmom New Member

    I love this board and I am soooo happy I am not getting flack for this and I am also happy that you all understand what I am trying to say without hurting anybody's feelings.

    Love to you all, Ann
  11. just honest. it is hurtful when people come on these boards and claim to have been cured. they either never had either CFIDS or FMS to begin with or are trying to sell something. Its downright hurtful to those of us whom have struggled with it for as long as we have. I do understand there are varying levels of illness with both CFIDs/FMS people who have either one or both and how long they have lived with either. I myself have tried many many many things and have just started accepting it just isnt going away. I have lived w. CFIDs/ME, FMs (etc) from age 9 which is now *sigh* 22 yrs. I was not diagnosed until around age 18. I am at a point where I dont get sick all the time but its a delicate balance. I dont get out much anymore either. Anyways ... just wanted to say that we all struggle with this, no matter our level of ability, and any false claims of cures can be very hurtful.
  12. wellclare

    wellclare New Member

    Hi Ann,
    I was one of those 'I'm cured' people. I am sorry if my message distressed you and others. I am not touting anything at all. I have no financial gain from this - I am an artist by profession.
    I often got very hurt feelings and down when people said things like all you need to do is 'pull your socks up' or 'if you did my gong therapy or took this supplement or did Reiki' or whatever then I would get better. Many people had little belief in my illness being 'real'. That's partly why I stopped talking about it. I couldn't stand the advice and the disbelief and the 'poor you' responses. I did have fibromyalgia and M.E. for 7 years not just a few months - believe it or not - I am used to others not believing me but it is novel that people who suffer from it don't believe me just coz I am better now. People do get better from this even without therapy sometimes.
    Anyway this is my one and only day to talk about this you will be glad to hear. I will deregister tonight since people are getting upset about it. I only wanted to be helpful and share my experience - interestingly when I went to do the Lightning Process I thought negatively (I was full of negative thoughts and feelings which exacerbated my adrenalin production) that I had a special sort of M.E. that it wouldn't work for and so did every other person that has done the process because we were all feeling negative - understandably.
    By the way I found that 'even' drs couldn't help me at all! They are very good at somethings but seemingly not M.E.
    Amongst my friends and relatives who have seen a truly remarkable difference in me it took a time to believe that I was better that I didn't have M.E. My neighbour kept checking, my partner had to relearn that I could do things like go up the stairs which was a no no for me for years. Anyway there is hope and which ever way you take I do think it is about stopping the adrenalin poisoning the body. It should be for short bursts and mine got stuck in overdrive after a 2 week flu in bed, abscess in tooth, urinary tract infection, antibiotics and painkillers all in a matter of weeks. Of course my body went AAAAhhhh.
    best wishes

  13. Aeronsmom

    Aeronsmom New Member

    Please don't leave us!!! this was not directed at you. you are very much welcome here, don't leave because of my post.

    Love, Ann
  14. shar6710

    shar6710 New Member

    Wellclare, please don't feel bad sounds like you just meant to answer the thread prohealth started and started your own instead. People here get a little suspicous when someone new pops in with a claim to be cured because some have had ulterior motives in the past.

    Ann, I understand why you might be upset but I think Prickles found the answer to your question. Responses to the newsletter is why there are all these "new" people touting cures.

    Callum I think you're right on.

    We should celebrate when someone with these DDs gets cured. Didn't we all congratulate Rich Carlson when he said he was cured? The frustrating part is that it takes soooo long and no one thing seems to work for everyone.

  15. Liz919

    Liz919 New Member

    If it makes you feel any better I'm new and still sick. :) I heartily agree with you though. If I were "cured" I wouldn't be on here, no offense but I just wouldn't need the support. I'd be out frolicing in the daisies and joining sports teams left and right or something athletic and lively like that. It took me a while of google-ing to even find this site...I don't know why anyone who wasn't feeling poorly would expend the effort. I don't think you're being a "negative nancy" at all, you just realize that the odds of this many people being actually "cured" all finding the site at the same time are slim to none. I hope you feel less down on yourself! :)
  16. Redwillow

    Redwillow New Member

    Hugs Ann

    You are only saying what most of us was afraid to. We all have had enough of some well meaning person saying "FM, oh a friend of mine had that! She just joined a gym and now she is fine!" This quote from my dear MIL.

    We have all been told to just get some exercise, take this vitamin, loose weight, give your head a shake.... whatever the theory of the day.

    I am also very sceptical of people who say they are cured. I believe that a lot of people have improved the way they feel by eating better, and taking medication that helps them get a good nights sleep, and removing a lot of stress from their lives.

    Right now I am going to a herbalist who says she can make me feel a lot better. So I haven't given up hope yet but it is hard to feel hopeful when your body is wracked with pain.

    hugs Redwillow.

  17. Clouddead

    Clouddead New Member

    The thing is, if you have 'mono' for 5 months you are considered to be suffering from postviral fatigue. Six months and you will be diagnosed with CFS.

    The symptoms of CFS can be caused by many things I think it is fair to say. Often it seems it is a complex mix of any or all the the following: pathogens, genetics, brain chemistry, environemntal factors etc

    To me it would therefore stand to reason that there is no 'cure' as we could probably be categorised into various sub groups. I know of people who suffered with EBV for 18 months. Is this true CFS, if they had the symptoms, or not? Who decides what is true CFS?

    I can't imagine what it feels like to suffer from this for years, and i understand some peoples scepticism, but people do recover. It's also important to remember that people who do often don't come back and also that people who have had CFS for years sometimes recover fully, for unknown reasons.

    Having said all that i'm a cynic too!
  18. Cromwell

    Cromwell New Member

    Well, yes and they get quite annoyed too at times.

    I am happy for people who are cured and yet too, I sometimes wonder if these people actually HAD our DD in the first place or did they have something else? There are chronic conditions that can last anything from a few weeks to a couple of years that are actually not the same thing.

    Some forms of arthritis can be short lived depending upon hormone levels for eg.

    Cure is also emotive-if only we would JUST do this or that etc. we could be cured also is a bit of an insult and presumes we are all leading some sort of shallow, junk filled food lives and are "to blame".

    I would say just try and not let it upset you at all. I hardly read those posts now, or the posts that are telling people off. I tend to just chat on the Porch post and answer people who need help.

    Be good to you!!!

    Love Anne
  19. Clouddead

    Clouddead New Member

    Okay, what I just wrote didn't make much sense! I haven't seen these 'cured' posts though, so that's my excuse, that and the fact it's late here....

    If I recover I will still check back on here and I am determined to do something about the way it is treated in the UK if I can, not just now but if i recover too. It's a disgrace. The way I see if you recover you have more energy and clarity of thought to do something.

    Going to bed.....
  20. gypsy101

    gypsy101 New Member

    I just posted about something similar.... I didn't see your post.

    And it doesn't help that drs dx fm too quickly (in my case, maybe) Freaked me out, I came here, and maybe it isn't even fm???!!! I'm still in feeling lost. I don't know what I have. The official dx is fm. But I don't have all the symptoms and I don't even know if thise is a progressive disease ... I don't even know the answer to that!<br>[<i>This Message was Edited on 10/25/2006</i>]