Sad to say...

Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Jul 28, 2009.

  1. Shananegans

    Shananegans New Member

    Ever since I have improved 10 fold I periodically pop in to see how everyone else is doing or if anyone else has discovered anything new about themselves and within 2 posts with responses, I read something negative that someone has said to another person or about their situation.

    It really is sad because it makes me no longer want to be part of this community. One of the major things that has helped me get well again is removing negativity and then here I am watching people bash each other on this website. If someone has said they have improved via common sense, then maybe it's actually true and maybe instead of bashing them, you should try it out instead of saying it doesn't work.

    I got better because I finally got the correct diagnosis. 10 years ago Celiac disease was not the first thing that was looked for and I had to find it for myself. I was told it was FMS because my doctors gave up due to it not being lupus or lyme's or MS, they never thought outside the box and I'm the one who suffered. So now with a diet change I feel amazing. It will take a long time for me to completely heal but I'm working on it. So stop assuming everyone who comes here and says "diet changed my life" are just advertising. We are real people who are getting better because we never stopped looking and no diet along will not do it, you have to exercise, you have to remove negativity, you have to make life worth it again. Stop bashing people because you refuse to try something new.

    It just unfortunate that I have to get upset every time I come here to check up on people I have gained as friends and I'm sure I'm not the only one who feels this way. Please take your negativity somewhere else and please stop bashing people who have found their answers.

  2. lynncats

    lynncats New Member

    I am so glad to hear that you have improved. Was just wondering what exactly is Celiac disease? I was dx'd with FM in Feb. '09. I read your profile and some of your symptoms are like mine, flu-like feeling 24/7, digestion problems, I have divervulitis (sp?), major body aches, headaches, theres more, but my mind just went blank. Anyway, sorry you may leave the board, I hope you don't. But it you don't mind telling me a little about Celiac, I'm all ears. You take care, and I'm glad you did your homework and found out the true nature of your problems.


  3. FMsaddenedspirit

    FMsaddenedspirit New Member

    You know I just posted something very simalr .. I think it was "this is so sad all the bickering "

    I have not been here as long as you have only . from Aug 2008.. But there does seem to be a negtive tone to some post. specially if you say anything about feeling better. Sad Hu. ?
    I don;t pretend to understand our Illness or what we each Suffer with ..or maybe even what the poster's are trying to say at times ...I guess.... and am not pointing fingers. as its not just one person. But ya.. anyway .. I pray for calmness in each of our hearts.

    the board has really slowed down to. Oh well..

    I have come to really care for lots of people here. but have less and less desire to post .

    I am so gald you are feeling Better.. that's great news... my daughter cut out dairy products .and it took away a lot of her probelms as well... I guess its my turn to try

    Take care all... prayers for Good days to come.

    Spirit ~
  4. Shananegans

    Shananegans New Member

    Celiac is an auto-immune disease where the body cannot properly digest gluten found in wheat, rye and barely. If it is left untreated your body basically becomes a toxic waste dump and everything becomes unbalanced including essential nutrients. It causes the villi in your small intestine to become flat and they will no longer collect out of food what your body needs to survive and can cause a laundry list of health problems including what is listed in my bio plus many many more, all very dangerous.

    They have recently discovered that 1 in 100 Americans have Celiac and so many are undiagnosed because until recently (within the last 4 years) it was a very under studied, under diagnosed disease that was not taken very seriously. Now there is pages and pages of information on line and so many support groups, foundations and doctors are now starting to take it seriously.

    Google Celiac disease and you will find so much information. I am always happy to talk about Celiac. The only treatment is cutting gluten out of your life forever. It's interesting at first but well worth the effort in the end.

    Good luck to you
  5. Shananegans

    Shananegans New Member

    When I first started on this board there was very very little negativity and it's unfortunate this has happened but I'm glad I'm not the only one noticing it.

    I'm sure it's a huge reason the board has slowed down. None of us need extra negativity in our lives, we need support, hope and help. Most of us get enough negativity in the real world for being sick and we come here to get away from that.

    Wish you the best!
  6. mysticbrit

    mysticbrit New Member

    I share your concern about the negativity found here recently. It's not a healthy situation for any of us.

    But - there are dozens of us still here who refuse to play those games. I've been here for a really long time and have learned so much.

    I also have Celiac and it has changed my life. It took almost 2 years to get my diagnosis. I lost 60 pounds and almost gave up, but I had a great support system from my family and family doctor. They wouldn't allow me to quit searching for an answer.

    I also have had FM for at least 30 years.

    Please allow those of us who choose to believe in kindness to support you as you travel this road.

  7. Shananegans

    Shananegans New Member

    Thank you for your response. It warms my heart to know there are still positive people here. I enjoy knowing I have a place I can go to de-stress myself and hope I won't have to leave. I've been here since 2004 and can't even begin to tell you how much this board helped me through some really hard times. I just want to give back what I got from here and find it difficult when reading all the negative responses to good posts or the constant bickering because some doesn't agree with how someone else recovered. It's very disheartening stuff.

    Thank you again!
  8. gapsych

    gapsych New Member

    I have a friend with celiac and it is horrific.

    I don't think we even know what CFS is anymore and in a sense that is scary.

    This causes a lot of anxiety.

    Rafiki posted an article about how when things similar like this happen that a board needs to heal. Fog prevents me from remembering all the things it says but it had a great quote.

    Rafiki would you mind posting the link again. I do not want to do it without asking you first.


    ETA I think when we are so sure of our beliefs that gives us a sense of well being and it is tied up with who we are. Our DD, the brain fog etc. can make it harder to handle these type of things and we may misread things, lash out at others.

    I really have hope for this board. It may take some time but I think in the long run it is worth it to stay here. [This Message was Edited on 07/28/2009]
    [This Message was Edited on 07/28/2009]
  9. Debra49659

    Debra49659 New Member

    Thought I'd stop in for some kindness and consideration :) Glad to see there is a thread with more thoughtfulness and no bickering.

    For me its not so much the disagreements, because we are all different and it would be next to impossible for everyone to agree.

    But why is it Prohealths fault?? Prohealth gave us an avenue to learn and support each other, I'm pretty sure they didn't agree to be the referee in all the battles. Not that anyone on this thread has suggested that it is Prohealths problem, I'm referring to another thread.

    Imo, we need to learn to agree to disagree and leave it at that. Those that want to fight can take it to another site, the rest of us can stay and support one another to the best of our abilities!

    I'm printing of some information to take to my family doctor on Celiac's, I'm wondering if that is not some of my problems.

    Thanks Shannagins for the reminder that this board really is a wonderful thing, please don't leave we need you!

  10. Shananegans

    Shananegans New Member

    I think you are absolutely correct with the brain fog, etc making it harder for people to accept things, I will definitely agree with you on that point. I hope things do clear up around here, I feel I have a lot to share and would hate to take that away from people who have yet to find their hope. I have done so much research, at this point I could probably easily at least be a nurse (if it wasn't for all the sick people... hahaha... kidding I swear) and I would like to share that with others who may not know where to look.

    Thank you for your kind words!
  11. Shananegans

    Shananegans New Member

    Thank you for your words also and I agree, it's not so much the dissagreements that bother me as we are all human, it's the out right bashing, telling people they are wrong or stupid or ignorant. Everyone has their own method and if it works for them, of course they will want to share to maybe help someone else.

    And you are also right that it is not Prohealth's fault. Last I checked we are all adults here and should know when to just stay quiet and keep our opinions to ourselves. I don't agree with everything and if I feel something bad to say coming on, I just walk away. I will not insult someone else without knowing all the facts and that is impossible here as we are never face to face with their circumstances.

    Thank you again!
  12. Shananegans

    Shananegans New Member

    Thank you for your reply as well. There have actually been times I have been afraid to post something because I didn't want to get bashed for my thoughts and it is sad because maybe it would have helped someone.

    And to all: I feel so much better having posted this to find that there are still some decent people here who truly are just looking for support and hopefully answers.

    thank you!
  13. Rockismom

    Rockismom New Member

    Just wanted to thank everyone for the enjoyable, encouraging thread.

    It's nice to know there is still positive energy flowing here!

    All the best!
  14. butterflydream

    butterflydream New Member

    of all the negativity on this board.

    I am so pleased you posted this. i avoid the bickering and i'll be darn if i didn't read a post very recent that really upset me of all the arguing in the post. Wish i never would have read it.

    I'll soon be off the boards if this continues with the uncalled for postings.

    I'm here to educate myself of a illness that i have. If i can post information to another and help them i will. I'm not here to stress on someone bashing people.

    Thanks for posting the truth, sad to say...

    Be Well
  15. "You take the good, you take the bad, you take 'em both & there you have...... the facts of life.... the facts of life...." (*chuckle*)

    But, in all honesty. I'm sure many of us here, are 'guilty' of just what I've seen said, not just on this thread, but, another...

    We turn around & vent about being 'sick of seeing'.... (all the negative posts, threads, comments... etc)

    We are only human... but, we need not forget- WE ARE in charge of what we see, and read..

    We CAN just hit the back button, the very *instant* we realize a thread or post is 'ugly' or that even a good post has gone bad...

    I'm sure some read this & think "YEAH- BUT*.... 'i want(ed) to be able to read about what the original poster was talking about, treatment plan, etc...'

    Well, that's why Prohealth not only gave us the "ignore this user" button, BUT ALSO- an additional button, I myself just saw tonight, of "ignore this post"..

    maybe, (instead of having to start *another* thread, addressing the original poster, & asking them to please do go on with what helped, etc... & 'risk' your own thread turning ugly once again...)
    Maybe you can *skim* a post briefly- and literally- to reduce your own stress, the instant you see a post there is not one you *want* to read... click that 'ignore this post' button....

    I don't think it ignores the whole thread (??) but, the offensive (to whomever does not wish to see it) post only... just go through & click as many as you have to, and then you'll be able to see only the positive posts, in which you yourself wish to read on, and thus, not be 'exposed' to the posts which do upset you?

    Just my thoughts...

    I'm guilty, I'll admit, and sometimes want to kick myself for the time I won't get back, having read all through a thread (tend to get caught up in it, so that I can follow the thread, I read ALL the posts) then, there I am, 45 minutes later (on those monster threads/posts) literally sitting in my own home, looking at a screen, and I'm all worked up. Absolutely could just *kick* myself...

    Like many other, far wiser people have said on the boards here, though, we are humans, we do all need to work on/worry about ourselves... and we CAN control whether or not we get worked up, or upset, even just reading the threads on this board (thanks to ProHealth, again, giving us more tools to help ourselves!)


  16. faithinlove

    faithinlove New Member

    We go through the days and most of us are feeling really bad and are having bad times with the feelings we deal with just being sick.
    Pain causes us to do a lot of things we are not proud of at times, it really takes a tole on a person and our quality of life.
    I have said it before I do come here for the education but I come here mostly because I need uplifting and I know some of the people on here say sweet things that make me feel I am not alone. They truly understand what is going on with me because they are there or have been there before. This has helped me so much.
    I only wish we could do that for each other every time we come to the board.
    When we feel horrible we need friends who listen and help us feel better with encouraging words.Friends who know where we are because they truly understand how we feel.
    I am so happy for those who seem to be getting better and want to stay in touch with them so I might know a way to fight this battle. I never know maybe, just maybe,they hold a piece of information that could turn my life around and I could get better.
    I have not posted lately because things have not been the best for me, a really bad flare, but I do know that things will get better.
    I only hope we do not lose anyone on this board and we can all be here for one another because that is what we are brought together for.
    Sometimes I wonder maybe especially for me I need to ask myself is what I am about to post really important and will it make others feel better or will it hurt someone?
    I just think we need to help one another..that is what our bond is all about here or at least that is what I wish it could be.
    I know I am rambling but I just had to say what is in my heart about this board and my friends on here.
    Bless each and every one of you
    hope we all have a blessed week
    Keeping the Faith to get better
    Love Faith :)
  17. elaineboot

    elaineboot New Member

    Hi I total agree with what you are saying, that is why i dont log on that offten cus people do tend to be negative.

    Let me tell you a bit about me I am 33 and I am sure I have always had FMS, it took a long time for me to finly get digonsed and to get benafits, I live in the Engaland and there is a nice positive support group I attend once a month; we meet in a pub and have a meal and a good chat; the reason we we meet in a pub is to encurage people to get out and meet up with people, and we swop ideas about whats making us feeling better.

    Like you have found that changers in my diet have helped, I eat healthy diet fresh fruit and veg whole grain Im sure you get the idea, i ovied junck foods, fry foods, sailt and anything containing MSG; the group I meet up with have made chagers to their diet, one of them has cut out dery (milk, Cheese etc) and you know what we all feel much better.

    Being negative towards people is not helpful and by not giving things a go is equal not good I do hope this makes sense, excuse spelling im Dyslexic
  18. Shananegans

    Shananegans New Member

    Rockismom, Thank you for popping in, I'm always happy to see your posts!

    GlenP: That was truly my point in my post, sometimes I am afraid to post things that may help some people because I'm always waiting for that one person to tell me I'm an idiot and I just can't handle that kind of response anymore. Thank you for reading and responding!

    Butterflydream: Glad to know I'm not alone, although I do know everyone would hate to see you go as well.

    aintasgood...: Thank you for reminding me that there are options to ignore certain people or even just certain posts. As a matter of fact I used it just moments ago. You have a good point about controlling what we see, but sometimes I just get so sucked in to people's stories and then BAM there someone saying they are an idiot. It's unnecessary and I truly wish it would stop.

    faithinlove: You are right, being ill makes people say and do things they normally wouldn't or at least normally shouldn't. It's just unfortunate.

    elaineboot: I did the same thing with my diet, I cut out all unnecessary things, not just gluten because I knew it needed to happen. Fruits are now my sweet treat and vegetables my salty. I very rarely eat potato chips or candy anymore and I do feel so much better.

    Thank you all for reading my post and giving your opinions.

    and to the person who decided to be rude, I've blocked you and you will stay that way. It's people like you that are the problem and I will have it no more. Did you know that 35% of people who are diagnosed with Fibromyalgia actually turn out to have Celiac disease? Well I do and that's why I'm still here, just in case there are more like me who just need the correct diagnosis and some knowledge so they don't have to suffer for 10 YEARS like I did, maybe my story will help them in 2 years or 6 months, before the needlessly lose their life.

    [This Message was Edited on 08/01/2009]
  19. Shananegans

    Shananegans New Member

    So far I have not found a fruit that doesn't like me. I do well with all fruits as far as I know. Well fresh fruits anyways, can't eat anything canned because of all the additives.

    And of course I do have other issues other than Celiac but that was my main offender slowly ruining my life. I am also lactose intolerant and allergic to rice and I have to be very careful how much red meat I eat as it will make me very ill. I also have weak joints (well weak cartilage really) but now that I have cut out the gluten, I no longer feel the overall body aches (flu like) or the constant exhaustion. Now I get tired from a hard days work like I'm supposed to.

    My biggest hope is that I will help someone else. Maybe I even helped you. That's why I'm here.

    Wishing you the best.
  20. Janalynn

    Janalynn New Member

    It's a good reminder, that before you accept a diagnosis of Fibro, you should be tested for Celiac.
    My diagnosing rheumatologist ran a thorough blood work-up before diagnosis which included ruling out Celiac. Ask for it if your Dr. isn't doing it on their own.

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