Venting Please read Not trying to offend anyone

Discussion in 'Fibromyalgia Main Forum' started by willruthie1965, Oct 31, 2006.

  1. willruthie1965

    willruthie1965 New Member

    One thing that bothers me about this board, is that If someone says something worked for them, everyone gets mad and says "well,maybe that person didn't have fybro in the first place,"Or they get offended, like why are you giving people false hope. I dont understand why we can't have something to believe in? WHat's so wrong with that? If we didn't have hope we would have nothing.

    People who get mad because something worked for another person is being selfish. You come here to get support and hope and possibly cures for some people.It doesn't mean you were never sick, it just means your system is different and may respond to some cure.If it doesn't work for you atleast you tried.
    Also in the same respect People who do get better should never make another person feel like they have't tried hard enough, or act in the way a normal person would act, suggesting you are lazy, overweight,depressed,and talk your self into being sick.We just all Ihaveto work together.
    Think about how chemo works for some but not all, but one thing the two people have in common is that at onetime they had cancer. Just some thoughts Ruthie
  2. Aeronsmom

    Aeronsmom New Member

    how many people on here have had fibro for 20+ years and have tried everything with no relief or no change or have progressed in their symptoms, but people have come on here and said "well I have been sick for 6 moths and now it's gone it's a miracle"

    I don't think we are being selfish I think we are trying to be realistic and cautious. For me I would do/try anything not to feel this pain and anger and depression.
    so I have to be leery to people who say they are "healed or cured"

    Ruth please don't think I am flacking you for this post I just wanted to put my 2 cents in.

    love to all, Ann
  3. johnston

    johnston New Member

    possibility that they got the help they needed early enough to make a difference, a big difference.
    And sadly, what they may not be aware of, is that they may be in a "remission". An extreme stress to their body, emotionally or physically, (or maybe even nothing at all except time) it may all come back again. I, personally, use this source as info. gathering and to hopefully provide some with support, encouragement, or even knowledge that I have gained. Not to critique anyone. Thanks,
    Rhonda
  4. TKE

    TKE New Member

    I actually got better for a few years & then WHAM!! it came back. I think allot has to do with each persons genes & immune system. What works for one will may work for another.

    Allot also is in the hands of the docs as to the tests they run, treatments they offer & of course insurance play a big role in what we can afford to do to help ourselves get better.

    I do feel that anyone who has gotten better & remains well should post how so that others can at least look into it & see if it'll help them.



  5. Greenbean7

    Greenbean7 New Member

    I read everything that says someone has found a cure or even something that helps them in any way. If it is feasible I will try it. Some of it I can't and so far what I've tried hasn't done much, but I tried.

    The only problem I have with someone saying they have "the cure" is when the person just came on the board within a day or two and has nothing in their profile. They just don't seem legit to me. Again, just my opinion.

    Hugzz
    Greenbean

    Stop and smell the puppies!
  6. Aeronsmom

    Aeronsmom New Member

    I swear...some people just don't get it.

    I am on this board to talk to others and cry with others
    and support each others who are going thur what I am going thru because I know of noone else in my area to talk to about what I am suffering. I love this board very much and I have gotten alot of information and help and support, BUT when I come on the board and hear of people just registering that same day and saying they found a cure and post a website only to find out it's another scam because
    some greedy person wants money!

    How am I suppose to feel?. I am so tired of people claiming to be "cured/healed"

    so I think I am going to be taking a break from this board for a while because this is just getting to be too stressful. So love to you all and hopefully I'll be back on to talk again to all the lovely people who have made me feel welcome.

    Ann
  7. Slayadragon

    Slayadragon New Member

    I think that it's highly unlikely (or impossible) that someone with fibro or CFS would be really sick one day and then totally "cured" within a few weeks or days or months.

    I do believe that it's possible to keep chipping away at the problems and to improve one's health. It took me years, but I did it. And it's not like it's been a temporary remission.....it's been at least 8 years since my health has been at least tolerable.

    I have to think that, at least someday in the relatively near future, there is going to be the chance that I will get even better. Maybe not totally well, but at least close enough to it to lead the sort of life that I want.

    It's when I lose that hope that I become really depressed.

    And it's when I believe in that possiility that I do things that, a small percentage of the time (which is something!) make me feel permanently better.

    The "Why bother?" and "Don't try that" posts on this board are just as upsetting to me as the ones you cite are to you.

    Obviously, if someone claims to have a miracle cure, I write them off. But the posts that make _me_ feel better and more inclined to stay on the board are ones where people who have said they have done something for their health that has helped.

    Those give me ideas and increase my hope. I do not believe this is a hopeless disease (at least in improving somewhat), but there have been days that I've spent time here when I've started to think so.
  8. Redwillow

    Redwillow New Member

    Ann I hope you don't leave us. I know you have been struggling with extreme pain and you must be so exhausted.

    I will miss your posts. Please come back soon.

    hugs Redwillow
  9. Adl123

    Adl123 New Member

    Rock on!!!!

    I echo your statement. Surely we, who have had either CFIDS or Fibro, or both, should be the first to be compassionate towards everyone.

    Peace,
    Terry
  10. Aeronsmom

    Aeronsmom New Member

    you are so wonderful with your kind words, I am still going to take some time away but will check on often and when I am ready to start posting you'll know.... I'll be the one hogging the board. I have learned so much about this DD just from being on here and have made many friends, So Please take Care and we'll chat soon.

    love to you, Ann
  11. johnston

    johnston New Member

    between my great rheumatologist and very good pcp, I am worlds apart from where I was 3 years ago. Still, I know I am not normal and it is very demoralizing! I think most people on here have hope, or they wouldn't be on here looking, searching, hoping.......I, too, wouldn't appreciate someone trying to abuse our situations. We are so miserable so much of the time, it is dispicable (sp?) for someone to try to take advantage of us for dollars. BUT we all know there are people like that out there. I just ignore them. Takes too much energy to read and respond to the people I can help or can help me to waste it on someone who is trying to make money on a very frustrated, broken life. I was stolen from me by my body. I hope the false people will eventually be touched with knowledge of how hard this is on us and will stop trying to abuse a desperate group of people.... Rhonda
  12. willruthie1965

    willruthie1965 New Member

    Ann Please dont leave because I wrote something that was diplomatic. I was not talking about the people selling stuff,who do not contribute,I am talking about the honest messages that may help some.

    You guys all heard me talk about the negative energy from people who dont belive you.One person being cured or in remission is worth reading, They may or may not have had fybro, but they are better.
    If one came on here after years of pain and stumbled on something we should listen.I doesn't mean they were never sick.If we knew enough about this illness we woudn't be in the situation we find ourselves in now. No one believing us..Ruthie
  13. Aeronsmom

    Aeronsmom New Member

    Please do not apologise for something that you needed to say, that is what this board is here for, for all of us to vent, cry, support, laugh.

    I don't know maybe I am being really sensitve latlely (still in lots of pain, and my period...(whenever it feels like it showing up) is due anytime, so with all this pain and I'm PMSing, that's alot for my body. I am not leaving because of your post Ruth, I just think I need to take a small break,

    I don't believe in "cures" or "miricales"
    and I do believe people do feel like they are better but as I have seen and heard the Illness comes back and when it does...watch out it can be worse than when you first had it.

    Good night all, Ann
  14. willruthie1965

    willruthie1965 New Member

    Yes I remember the cycles hubby went through,.You think you candomost anything till it hits you again.I am in good days now ,butaboout 3 weeks ago I needed a cane when I gotup for the first 2 hours everyday. Love Ruthie Take care
  15. dhpersinger

    dhpersinger New Member

    I think anyone who has been suffering with fibro for a while has experienced those rare times when you feel well and think you may be cured. It does not offend me when someone says they were cured by a particular treatment. I realize that everyone is different, and what works for one person may not work for another. I also realize that the same person that is claiming to be cured will probably experience another flare and realize that there is no cure for fibro, only management of symptoms. Because we suffer from chronic pain and fatigue, I feel it makes us more sensitive to certain comments, but isn't the purpose of this message board to share our comments, successes, and setbacks? We can learn from each other and find comfort in the fact that there are others who are dealing with the same struggles that we are.
  16. KelB

    KelB New Member

    There's no "one size fits all" version of FM or CFS, so there's no "one size fits all" treatment. It's great to hear about approaches that have worked for people, but I agree it's a shame that this is spoiled by the minority of scammers who just arrive here to announce some miracle cure.

    However, I feel the best way to deal with those is not to get involved, but just to press the "Alert the Mods" button (exclamation mark in the blue triangle) at the bottom left of their post. Any disguised salesmen will be booted out in short order, without the need to upset ourselves.

    Personally, I'm loads better than I was this time last year and I know that the main thing that helped me (CBT) has not proved a success for many others. But I still value hearing about techniques that have worked for others. CFS and FM are such "mix and match" illnesses that sometimes we need to know about a range of potential options.
  17. 69mach1

    69mach1 New Member

    i am not them....

    and everyone our body chemistry's are different.

    jodie