A lot of these FM books make me MAD. FAKE PROMISES

Discussion in 'Fibromyalgia Main Forum' started by megchampagne, Sep 3, 2006.

  1. megchampagne

    megchampagne New Member

    I went to Barnes & Noble this afternoon, and since I'm in the middle of a major flare-up, I decided to go take a gander at fibro literature.

    To my surprise, there was actually an ENTIRE shelf of fibro books. (Are there a lot of FMers in Baton Rouge or something?)

    What took me aback, however, were the title of some of these books. "Reverse Your Fibromyalgia"... "Seven Steps to Curing Your Fibromyalgia"...

    Now part of me felt like a jerk. I don't want to say I like suffering, but there is no part of me that will try to CURE my fibro because I KNOW THERE IS NO CURE. This is because I have educated myself on the subject and I simply know that quite frankly there is NO cure.

    So why do these self-proclaimed experts get off on publishing these books promising cures? Retrogression? Shouldn't these people be criminally charged for selling this knowingly false information simply preying on sick people's hopes?
  2. JewelRA

    JewelRA New Member

    I just bought Dr. Teitlbaum's book From Fatigued to Fantastic and am really starting to wish I'd saved my money. If I followed his program to the "T" I'd been on TONS of medications and supplements which would cost hundreds of dollars a month and also be spending hundreds if not thousand on other therapies. What person with a normal income can do that? And even if you could, would it really be worth it?

    I guess I have become pretty skeptical.
  3. Cromwell

    Cromwell New Member

    There are so many how to books out there and it seems some written by real rip off artists too.

    Unfortunately it clouds the picture for the real people who do know something and can help.

    Some of these get rich quick writers can do a lot of damage as well as there seems no law against making claims about anything.

    My feeling is always if it seems to good to be true, it usually is.

    Love Anne
  4. Bambi

    Bambi New Member

    little too sceptical about some of the things to do with FM treatments and tests, he has told me all along that he goes to all the seminars and IF and WHEN a cure is found or even a
    GOOD lead toward one he will be the first to let me know. Meanwhile he advocates doing the self help therapies and taking your meds, pacing etc, napping and doing the best by your pain and other symptoms you can. I think he's right.
  5. yellowbird

    yellowbird New Member

    i feel the same way about naturopaths... if they said ' i might be able to help a teeny little bit, but it will cost you a ton of effort, time and money and probably won't last', they'd be out of work...
  6. ANNXYZ

    ANNXYZ New Member

    any of these experts accomplish anything with their books other than making themselves rich . They give lectures , sell tapes and DVD's, and supplements
    and imply they are in the know about this disease .
    Yet truthfully , THEY RARELY EVER help anyone SIGNIFICANTLY .

    The titles of their books are misleading and they misrepresent their " expertise " .

    Their treatment "programs " are often priced at least four to ten thousand dollars .

    I think a person would be wiser to GET an IGENEX lyme TEST , read everything you can about immune system and nutrition , and seek help from a SAVVY GP who practices an integrated style of medicine.
  7. Greenbean7

    Greenbean7 New Member

    I like that you use the term LESS sick instead of being cured or reversing FM.

    Although we all wish for a "cure", being LESS sick is an improvement and I am all for doing what we can to help make myself LESS sick.

    (I'm not advocating any book or theory, just commenting on the terminology that Haley used.)

    Thank you. That is the term I will be using now.

    Hugzz
    Greenbean

    Stop and smell the puppies!
  8. julieisfree05

    julieisfree05 New Member

    I also have to step in to defend Dr. T!

    To the best of my knowledge, he is the ONLY doctor who has proven that his protocol works - in a double-blind, placebo-controlled study that was published in a peer-reviewed medical journal.

    Xyrem was my "miracle", and my doctor has done several studies with it, but none of them have been published yet. Eventually they will, but for now Dr. T is the only one that I'm aware of.

    - julie (is free!)
  9. zion1971

    zion1971 New Member

    i understand what each of you has stated. there are a lot of quacks out there. we have to be careful and use common sense. i, however, disagree with the mentality that there is no cure. i truly believe that many of us could be cured or healed of this illness. i have not and will not accept the notion that a healing is out of reach for me or any of you. accepting our illness doesn't mean we have to do that. there is no cure or healing YET. but i know it is on the way.
  10. jmblknit

    jmblknit New Member

    I TOO HAVE FIBRO,CFS AND BOUGHT DR T'S BOOK. I AM TRYING SOME THINGS HE SUGGESTS. I HAVE TO SAY THAT IT HAS TAKEN ME SEVERAL MONTHS TO LEARN TO PACE MYSELF SO THAT I DON'T CRASH. YOU HAVE TO DO WHAT FEELS GOOD FOR YOU. I WAS DIAGNOSED 10/05 AND LAST WEEK WAS THE BEST WEEK I HAVE HAD SINCE. MY PAIN WAS MINIMAL, FATIGUE HAS IMPROVED GREATLY. I KNOW IT WONT LAST BUT AT LEAST IT GIVES ME HOPE THAT I CAN FEEL GOOD SO I CAN DO THE THINGS I LOVE.


    JOANNE
  11. WoodstocksMusic

    WoodstocksMusic New Member

    Different medicines work differently for different people...and what works for one will sometimes make another worse!

    Lord, I would fail that Paper if it were in English Class, what with all those differents strung together in one sentence.

    We all know that something that works wonderfully for Shirl or Mikie may or may not work for us. We have to learn what our own body needs.

    A lot of what I am using today came from people on this board... and a lot of the things I stopped using came from these same people!

    There is no quick fix in this war against FM. We learn what works by trial and error.

    5 years ago I was completely bedridden for over a year and a half. Apparently I needed the extra sleep??? My body was truly bone tired. Many people will try to tell you they understand about being bone tired...but here you need to just grin and be patient with them...they were bone tired for a couple night....or even a week. However, they can never understand what it's like to sleep for 18 months.

    I was lucky to step out my back door once a month during that time. Most days, during that dreadful time, I would have to scratch my head and wonder if it had been 3 or 4 days since I had bathed and changed PJ's. And then I had to decide if I would do a load of clothes of bath that day since I could not do both in the same day!

    I am not the "me" that quit work 6 years ago to try to recover...(actually I quit work to try to lighten my work load...I still had to take care of my children and the house) But even that was not enough...I was on the fast track to a major "crash and burn" and just did not know it until one day I landed in bed, not to get up until 18 months later.

    Until someone has actually been that fatigued they will not and cannot fully understand you or what you are enduring.

    Remember this, if your body crashes and wants more sleep, then it probably needs the rest... you can give it that rest or push on like I did until one day that body completely shuts down on you.

    So I guess I rambled on just to say this:

    Try not to be too critical of those who do not understand this illness...it is a very complicated one even if it is not life threatening. This FM problem is not one a bandaide can help!

    And the very fact that it is not life threatening is a major reason why it is hard to get research money set aside for it...there is still cancer to cure yanno! ...so what if a FM sufferer needs extra sleep to function? So what if your in some discomfort...You will live while many die from cancer and heart conditions!


  12. Kayleen

    Kayleen New Member

    The book that helped me the most was "What Your Doctor May Not Tell You About Fibromyalgia". I had spent probably 5 years going to 8 or 10 doctors trying to find out what was wrong with me. I didn't know that they all added up to FM/CFS. This book explained so much! I don't do the protocal or whatever he calls it. But I have found, quite by accident that MusinexDM works for me. It dulls the pain anyway. I do alot of other stuff that has helped me go from barely walking and horrible pain and fatigue to where I can actually function as a normal human being. Anyway I thought this book had alot of good information.