Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Mar 30, 2007.

  1. joeb7th

    joeb7th New Member

    I have to admit, I didn't know anything about fibro, CFS except an occassional article about it until 15 months ago.

    The lady who wrote the "Sea Biscuit" race horse story that was turned into a movie a few years ago had her CFS story written up in Parade Magazine around the time this film came out.

    I read that and I felt bad for her even then. Her descriptions of her pain and suffering were so vivid and gut wrenching. And I believed every word she said about how bad her illness was. It was a very powerful story she told.

    But until I got this I still had no idea.

    No idea that these diseases had the potential to inflict so much pain and destroy so many things in your your ability to work and support yourself, your career, your social life, your sex life, your family life, your hopeful outlook and even your local hospital and medical community reputation.

    Yup, just 15 months ago I never even clicked on medical sites and never complained about medical problems except the ocassional older person aches from working. It was "easy" to get my mind on more uplifting thoughts.

    And now, even after 15 months of trying to learn about and deal with all of this I have not yet mastered the ability to think more positively despite the pain. I have not had any improvement in my medical state and I am not handling this anything close to as well as most of you ( under statement and so obvious it's embarrassing. ) That's how tough this has all been for me and I'm still in " Newbie" shock about it all.

    And I know I should not post these negative posts so often.
    and I apologize for them. And maybe someday I can actually write a good-news, more positive post. I sure hope so.

    But they are the truth about this illness from at least one sufferer's experience so far. And I believe we should ocassionally post the real suffering truth on these boards and elsewhere, no matter how sad, unpleasant or depressing.

    How else will anyone know how truly powerful and disabling these diseases are and how inadequate much of our treatment for them is if we don't share this truth with them?

    I have spoken up to a few of my doctors and ER doctors about their down-playing and not really believing me or believing that the pain is that bad or the illness that real. And because I do this alone, they are able to deal with me by treating me as a psyche case. It's their word against mine and in my community doctors are respected like gods.

    If I wrote an article in my local paper about this experience and the dismissiveness and humiliating treatment by so many docs here, 90 percent of the readers would instantly side with the doctors who have labeled me more nutty than normal.

    Alone, I'll never win an argument with a doctor here and in the minds of most Americans regarding these illnesses being more physical and worthy of more serious treatment, study and respect than just pushing the sufferers into the anti-depressant, anti-anxiety pill psych realm.

    But yet, in my heart and mind I know the truth about at least my illness. I know the truth about it being more physical in nature than psychological and it's power and pain and yes, it's ability to make you also emotionally collapse with suffering. Nothing can change that. Not even 90 percent of the country believing the doctors over me.

    Yes, the ONLY way anybody is ever going to take me or any of us more seriously about our concerns that we and these illness are too often disrespectfully down-played and mistreated is if we speak out LOUDLY and more often and in unison about these concerns. With reason and truth and evidence.

    It is this torturous, incongruous and cruel paradox of suffering and being disbelieved and treated disrespectfully at the same time that is one of the most mind blowing, saddest and under reported stories behind these pain inducing yet clinically-not-showing-anything immune system damaging illnesses.

    If that tragic and unethical combination scenario of pain and humiliating dismissiveness isn't a horror movie nightmare that needs to be shouted out and exposed , what is?

    But to ever break through this nationwide denial on the part of those who take oaths to respect our pain and suffering and to try to heal this without down-playing and humiliation and anger will only come about if large numbers of people shout out and expose this AMA travesty.

    Maybe we can't get out in the street, but hows this for a awareness and protest idea:

    We could all flood every web site our energy levels will allow us to on a certain weekend, and post on every message board an agreed upon declaration expressing these points.

    Yes, your postings might very well be removed by a board monitor I am sure, but keep posting that entire weekend.
    They can't keep up with hundrds of these.

    Call it a "Post-In!"

    I go on the AOL political boards off and on quite often and I could find another 50 boards on AOL to post this. There is a huge readership on AOL's news sites and boards. Often up to hundreds of thousands!

    And I promise you that I would do this if you would. So what if half our postings get kicked off. At least tens of thousands of people would see these needed messages of truth about our illnesses.

    I would post a brief run down story of this class of immune system damaging diseases, and a brief true life experience of the pain and suffering they cause...and lastly yet most importantly, I would post about the sad and unethical paradox that I have described here so many times about the attitude of too many in our medical society who not only down-play and/or dismiss the complaints of the sufferers these diseases but the humiliating, incredibly unethical, almost barbaric inferrences or even blunt suggestions to these patients that they are more mentally ill than physical.

    The shunting off of too many fibro-CFS patients to the psychiatric Gulag by medical doctors is a tragic reality for many of us if one is to believe the many postings telling of this here.

    And because this has happened to me ( on top of the unbelievable pain from the illness itself ) in such a shocking and unbelieveable way after 54 years of never being treated like this, I am motivated to speak out like I do so often here and everywhere. And I believe any of us who have experienced this should ALL speak out more on this subject. And not just among ourselves.

    Otherwise, the doctors and medical community in this country will never feel that they need to change their attitude and actions regarding our illnesses.

    I have to trust that there are enough people on this board that agree with me that we should all speak out more about our illness's and the treatement we receive for them.

    So, what weekend should we pick to do our " Fibro-CFS AWARENESS/PROTEST POST-IN? "

    [This Message was Edited on 03/30/2007]
  2. you should feel very proud of yourself,this is a very well written post.i most definately agree with you on this.

    im in the uk,and watch the morning news channel over here.just after that programe,we have a female presenter who has her own show.she had the actress who played erin in the waltons,on her show.

    this actress was telling us how she went on to develope lupus after having a breast inplant burst in her body.she was asked to explain how the lupus effects her every day life.

    what she explained was in some parts simular to what us fibro/chronic fatigue sufferers are going through.

    she then said that she was sorry for talking about it so much,and the presenter said... dont be sorry, im all for making people more aware of these difficult hopes that they might get more recognition.

    so its a start isnt it,im so happy that more presenters over here in the uk are doing this.we shouldnt be affraid to say we arent mad,we have a medical condition that doctors keep sweeping under the rug,and if that isnt bad enough,they are making us out to be nutty/crazy people.


    kind regards

  3. I have lived with this dd all my life, and I just turned 60. Its living a nightmare. We could all get this organized somehow.

    The only thing, on your other post alot of humor was on there which is alright sometimes we have to laugh, but if we are to be taken seriously we can't make jokes out of this dd or we won't be taken seriously.
  4. joeb7th

    joeb7th New Member

    All good ideas posters.

    Yes, some will be deleted and some will evoke angry rebuttal postings and complaints that we invaded their boards with inappropraite postings. Just like people stuck in traffic have to slow down or go another route when an awarness/protest rally goes on in the city.

    But it's the cheapest and most affective way we have right now! To heck with upesetting a few other posters who don't care about our plight and dilemma anyway. A few misplaced posts on their boards for two days won't hurt them

    There is going to be some complaints no matter what you do. But we just can't call the major news outlets and ask them to give us an hour to explain this situation. Yet, someone will report our massive "Post-Ups" if it gets into the news in a more controversial way.

    I will think of a weekend date and get back to you on this.

    I will also contact other CFS and Fibro sites to ask for more participents when we get this organized. We could also send these to every government representative at every level at the same time. Be prepared for contrary debating opinions, many by doctors.

    But we'll be ready for them. They are very smart and they will speak eloquently anbd calmy trying to keep their above-the-fray image. But don't be intimated at all by these docs. In reality, most of them are just extremely high paid mechanics for the body, albeit well spoken.

    But we'll be well spoken too. And at least the awareness that there is a huge base of unhappy and suffering FM and CFS patients out there with a clear and well thought out and documented complaint. That's our goal. If we get doctors arguing with us on line, we have done our job.

    We'll have the data copied and ready to paste. We can show them many loosely copied but different name and generalized story postings with the truth about the original posters horrible and dismissive treatment of them regarding these doctors. No real names, no real addresses. Just real stories. And since they are based on real stories, if anyone wants to challenge the validity of these stories in court or in the media we can cover ourselves wonderfully.

    What we need now is an official copied statement and dscription of Fibro/CFS and related diseases as described by their national foundation websites.

    The first title and statement will be to describe the disease and then to explain our Fibromyalgia, CFS Awareness/Protest Post-Up and to state why we feel the need to post it up on so many boards all across the country.

    Then the second paragraph will explain how these horrible doseases show themselves and what the symptoms of these diseases are, both in their moderate and extreme forms.

    Maybe we could list the names of some famous people who have contracted these diseases.

    Then lastly, our FIBRO/CFS AWARENESS/PROTEST MOTIVATIONS and our fed up, experienced based CONTENTIONS that the country and especially the medical community too often down-plays and mistreats us patients and these diseases and even shunts too many sufferers of these diseases almost barbarically into the psyche gulag and realm versus allowing us to be treated as well as seriously as other physical disease patients.

    We can cite the recent CDC statments recognizing these diseases.

    We can list published statistics of the approximate number sof sufferers and what it exhaustingly costs to treat oursleves when the doctors give up on us. We can describe the horror and exhausting struggles of people suffering from these diseases. We can list how many ways they limit, disable or even destroy their lives.

    We can suggest seperate treatmment centers be built where we can be treated with serious respect, away from the more rushed and disrespecting standard illness centers.

    Add to this list. Help come up with an AWARENESS/PROTEST DECLARATION. Help format this and our mission in one page hopefully versus two.

    The brains on here are brilliant. The amount of work we do here is worthy of Harvard degrees. The compassion is boundless...and now our sense of self rightous defense and respect is worth finally speaking out about to the world and especially to pour national medical community.

    We've been mistreated too long to let this medical unethicalness continue.

    Be brave every one. Let's at least try.

    CBS are you with us on this?

    Thanks, JB

    [This Message was Edited on 03/31/2007]
  5. joeb7th

    joeb7th New Member

    But, I feel that the point of the humiliating and spirit crusing doctor treatment of patientsd should ne be washed down, it should not be meajkly stated, It can be vividly described without opening this up for slander. General but true stories of this abuse can be shared. Mine sure will be. No names or addresses on wither iones sides will be mentioned. Just the true stroy itself.

    I believe this point is the main one in this story and it should not be held back or trivialized.

    I am guessing that me and my group will be labeled as psycho rebels...but at least these true stories will be out there and maybe the press will investigate more to see how wide spread and true these stories of deeply humiliating and hope and encouragmnent and spirit crushing really are.

    I also propose to establish a future national website hotline where patients can write and list what happened to them in their doctors mistreating them in regards to these alreay torturous illnesses.

    CBS...are you there? Are you with us?
  6. netnut

    netnut New Member

    I dont think mass spamming boards is going to do a bit of good. In fact, it is probably against the TOS for most of the boards and I know it is for AOL. They could yank your AOL account.

    I think there are better ways to get info out there. Email media outlets. Gather information about these disorders in a non-emotional way (just the facts ma'am) and send them to as many newspapers and tv stations as we can before May 12th. Include some personal stories but no ranting. Ranting makes us look like we are crazy. Info from the cdc, the arthritis foundation, immune support, fibro awareness...etc are all good outlets to send. I havent viewed prickles video because I have dial up but I am sure that would be good too.

    Ok...this is just my opinion and take it for what its worth but think about how fast spammed posts would be deleted if they appeared here.
  7. kjfms

    kjfms Member

    Wouldn't all of this energy be put to better use flooding government offices with letters, emails, and phone calls where it can actually do something?

    I think I will continue to do this instead of being labeled a troll or worse -- all over the Internet, which is probably what anyone doing this on the types of boards you mention would be called.

    Don't we call someone the same thing when they come here pushing something -- hey they probably really believe in whatever they're pushing too.

    I just do not think this is the right way to handle the situation there are better ways to be proactive...IMHO

    There are ways to be tracked down even if you set up a different email account (think ISP) -- food for thought.

    Sorry but I felt I had to give my opinion on this one.


    [This Message was Edited on 03/31/2007]
  8. joeb7th

    joeb7th New Member

    I am going to poost to everyone, every board.

    Every radio station, every nespaper, even if I get some blocked posting. The government gets millions of postinbgs a day. They just back log these and they don't get into the public domain and they don't egt talked about. I am going out into the public domain.

    I will work on a decalaration of my own. You can follow it or alter it . This is a democratic idea and effort. You can post whoever you like.

    The point is that we get 100,000 postsing out there in the week leading up to and during May 12.

    And my most important point is to describe ( and not hold back ) the tragic treatment of people suffering from these immunes system diseases by too many doctors and hospitals and clinics all across the country. They're dismissallas and down-playing and neding their search for cures for us is one thing....but the real nightmare...the real soviet style injustice is the shoving of too many of us into the psyche Gulag of nothing but anti-depressants and anti-anxiety treatment over all other treatments.

    In doing this over all other treatments, it is a blunt, disgraceful, spirit and self image crushing ,almost barbaric shoving of atients into an area they should not be shoved into and is not the primary cause of these illnesses.

    This so clearly violates the ethical principles of patients rights and oaths taken by phycisians everywhere to treat their partients with respect and dignity, not humiliation and personal bias.

    But even for hightened awareness sake, the week ending on May 13th, just post and post and post. You may never get a chance to do this again...and IF WE DON"T DO THIS....WHO WILL? IT'S IN OUR HANDS.... IT'S TIME!

    Personally, I am going to tell my whole horrific story.
  9. jaltair

    jaltair New Member

    I agree with kjfms / Karen that flooding other boards is inappropriate and also that if we put our efforts toward impacting decision makers who represent us, we would have more impact. May 1, 2005, I wrote the following letter to my Representative in DC in hopes of increasing awareness for FMS.

    Anyone may copy and adapt for personal use:


    The Honorable ___________
    House of Representatives
    1017 Longworth House Office Building
    Washington, DC 20515 0521

    Re: Fibromyalgia

    Dear Representative ___________:

    My name is _______________, I am ______years old, and I am a ____(job title)______. I was diagnosed with fibromyalgia (FMS) three years ago. Prior to my health being affected with FMS, I was a very active person. I raised three children, held down a full-time job and worked every other weekend at a second job as well as being involved in community activities. I had a "normal" happy and healthy lifestyle, and enjoyed every aspect of my life fully.

    FMS came in to my life some years prior to the actual diagnosis. It was insidious and went undiagnosed until I saw a rheumatologist. FMS first presented with severe fatigue. After that, I had pneumonia, irritated bowel syndrome, severe migraine, and severe body pain.

    As a __________(job title)____, this disease affected my life tremendously. I no longer have the stamina necessary to perform ______(describe duties)_____. Currently, I work as a __________. I have a director who understands my physical problems, and because of FMLA, I have been able to maintain my position.

    Many people with FMS are not as fortunate; many have lost jobs as a consequence of their FMS, and many are to the point of being physically incapacitated and are unable to work.

    I am asking that you help those of us with fibromyalgia by advocating for recognition of this illness by helping with the following tasks:

    (1) Assist with educating the doctors and lawyers of this country so that they will understand the reality of FMS.

    (2) Work with the Social Security Administration so that fibromyalgia syndrome (FMS) will be included on the list of illnesses that are recognized, and

    (3) Advocate for more research into the cause of this debilitating condition so that future generation may have a reprieve from experiencing fibromyalgia.


    _________Full Name_______
    ______telephone number______



    [This Message was Edited on 03/31/2007]
  10. joeb7th

    joeb7th New Member

    Exactly as I said. We have so many brilliant and reasonable and caring and dedicated people on this site.

    These responses to the idea of doing more to bring about more awareness and priority of not only the immune system diseases we have here , but about the treatment of people who get these by our medical community and our own government, are reasonable, well thought out and based on intelligent experience and information.

    Even though each idea is great in it's own way and we find some things to disagree with in each, cumulatively they are the kind of thng that we need to organize into a stronger movement than what is out there now.

    I find each idea so far excellent in so many ways. The sample letter to a representative is so reasoned and thoughtful and expressive of the real life changing suffering that we victims experience.

    I tend to want to be a bit more graphic in my sharing of the treatment we receive from doctors too often, but that is something I personally experienced and I would probably only express this in my own personal e-mails.

    I know that not everyone has been treated as shockingly and humiliatingly as I have by my doctors.

    But these points and the points about our social security people taking this more seriously are so important also.

    What I have seen with my situation is that the actual experience of getting these "fibro/cfs" type diseases is a shock the average American would never believe.

    The suffering is so beyond anything they could ever imagine and even I could ever imagine after just reading occasssional stories about people who suffered from these real diseases.

    The stories I read in Readers Digest and Parade and a few other magazines seemed so watered down and polite in describing the actual pain and weakness and the effect these diseases can have on people emotionally, socially, finanically, etc.

    I don't know why I haven't read so far about so many wanting to kill themselves at times, the power and pain and lack of treatment and compassion and believeing by doctors wears them down so much.

    And I personally feel that one of the most frightening and real aspects of these diseases is the almost horror movie scary paradox that you can run to your doctors in this pain, weakness and fear and life changing disability...and too often be met with a mind-blowing dismissal or indifference or worst of all...a shift toward treating you as a mental case!

    This last part has rocked me so greatly that in mmy personal e-mails I must mention this nightmare part of my experience with this disease syndrome.

    So, now, we look at all the suggestiongs, perhaps borrow something from them all and do what we will with them during that Awareness/Protest week before May 12-13th.

    I understand many of us responders concerns about "spamming." To them I say do what you feel is right...but JUST DO IT!

    If we don't get out thousands of e-mails that week, what have we gained?

    I am forced to sit at home here because I have used up all my medical history and personal credibility credit line with all my local doctors and our local hospital and ER.

    I am just no longer treated as anything but a complaining nut case to them. They all access my ER and other hospital reocrds that sy almost everytime...treated for anxiety and sent home...which are code words for nutcase.

    And I can no longer afford to see doctors 75 miles away or more. Soo this is all I have left.

    But I refuse to let what has happened to me just disappear into the stratosphere.

    I read too many postings on here of people literally crying out in extreme pain and suffering and lost hope...for real medical and social and emotional support help and understanding.

    These are real people! In this country and in this day and can we just let these people keep posting these desperate pleas on line like this without doing more than sending them sympathetic e-mails back?

    The ideal would be that we have a dozen hospitals built across this country whose specialy are these immune system damaging diseases and with grants and financial assistance for those patients who for many reasons cannot afford this care.

    Maybe these would be a cross between a medical hospitasl and a socially supportive one with physical therpay, and social therapy and resources and links to other treatment help these worst case sufferers get back their lives with compassion and caring and "real" help.

    I am sure that for every one of us who have found this board and post on it there must be 50 or more others out there in this country who are suffering like this but so confused as to what they have or some doctor has told them that what they have is arthritis or some other disease.

    I am not asking for down-the-road support. Thoise kinds of request get put way down the list of priorities by what one of our posters said was election minded politicians.

    What I want to do is send a much more pro-active urgent messsage to do SOMETHING NOW...about helping us who suffer from these down-played and dismissed diseases.

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