2 QUESTIONS FOR MEL RE: ALLIE POST

Discussion in 'Fibromyalgia Main Forum' started by blondieangel, Oct 4, 2002.

  1. blondieangel

    blondieangel New Member

    Hi Mel -

    After reading your response to Allie re: Teitlebaum, I couldn't help but wonder - are you aware his practice is to make out a very 'person specific protocol' based on the patients personal medical condition(s), symptoms, lab test results, etc.? Not just prescriptions, but w/ nutritional recomendations also?

    Secondly, I was wondering why you think Devin's book is the 'WORST' second to Teitlebaum??? I have NEVER heard that after 'conversing' with 100's (maybe 1000's) on FM message boards for years! It is commonly referred to as the 'purple bible' in the FM community! I learned SO much from "THE FIBROMYALGIA ADVOCATE - GETTING THE SUPPORT YOU NEED TO COPE WITH FIBROMYALGIA AND MYOFASCIAL PAIN SYNDROME. I recommend it to any and everyone who has or knows someone w/ FM/CMP -

    Mel, why so negative?
  2. blondieangel

    blondieangel New Member

    Hi Mel -

    After reading your response to Allie re: Teitlebaum, I couldn't help but wonder - are you aware his practice is to make out a very 'person specific protocol' based on the patients personal medical condition(s), symptoms, lab test results, etc.? Not just prescriptions, but w/ nutritional recomendations also?

    Secondly, I was wondering why you think Devin's book is the 'WORST' second to Teitlebaum??? I have NEVER heard that after 'conversing' with 100's (maybe 1000's) on FM message boards for years! It is commonly referred to as the 'purple bible' in the FM community! I learned SO much from "THE FIBROMYALGIA ADVOCATE - GETTING THE SUPPORT YOU NEED TO COPE WITH FIBROMYALGIA AND MYOFASCIAL PAIN SYNDROME. I recommend it to any and everyone who has or knows someone w/ FM/CMP -

    Mel, why so negative?
  3. lilladybug

    lilladybug New Member

    Have you personally seen Dr. Teitlebaum?

    Lilladybug

    Has anyone heard from "allie2" about her progress?

    Thank you!
    [This Message was Edited on 10/04/2002]
  4. Mikie

    Mikie Moderator

    I am a believer that we absolutely must take responsibility for our own health and our own treatments. Sometimes this means taking a spript, like your Klonopin, and it also means doing a lot of research and taking action on one's own.

    The biggest problem I see is that most people are in denial and believe there's a doc out there with magic bullets which will make us well. A few of these people will make lifestyle changes, but the majority will not be willing to break old harmful habits.

    Notice the number of posts and responses dealing with various drugs versus the posts and responses dealing with diet and exercise. People are just turned off to the reality that the best medicine is to eat properly and work out even when it hurts or when we are tired. There are exercises for those of us with CFS for when we are too tired to do much. CFS does complicate the picture, but it's no excuse for doing nothing. I'm not saying we don't have to rest, but we have to keep moving too.

    I know it's frustrating for you in your crusade to get people to look beyond medications in order to get well. I also know that what you are saying is often misunderstood. I look at it this way, if one must take meds, the goal should be to try other things which might eventually help one to get off the meds. I know that this isn't always possible; I take meds myself, but I am making some very healthy changes which will at least prevent problems which would mean more meds.

    Love, Mikie
  5. blondieangel

    blondieangel New Member

    It's really great that you've found what works best for YOU, but what you are doing for exercise, etc (I have read other posts of yours) would flare up MY pain so severely, I'd be bedridden with nausea, sensitivity to light, noise, odors, fragrances for weeks, perhaps months.

    We are all different here, and all of us have different body chemistry, and different reasons for onset of FM and other conditions. I cannot walk fast w/o giving myself a blinding left-sided headache from hip pain.I am unable to lift my arms over my head w/o flaring up nauseating neck/back pain headache. My joints are so stiff I sometimes cannot hold a cup in the am. If I bend at the knees, the pain feels like my leg will snap off.

    I pushed myself so hard, ignoring my fatigue from January -May of this year and crashed so bad I had to sleep all of June. I am still not completely recovered. For someone to suggest don't be a wimp, just push yourself, as my in-laws love to tell me, I will end up in severe exhaustion. The more I move about, the higher my all over body pain gets. That's ME.

    Everyone knows their own body. I have been an avid outsdoorswoman, surfing, water-skiing, hiking, bike riding, snow-skiing , in-line skating, taken aerobic classes for years, etc... and studied nutrition extesively in school and on my own. I have always eaten well - never had a sweet tooth, got made fun of in Grammer School because I loved the cafeteria vegetables!

    Like I said, I'm happy for you, but what you do won't work for all of us! I learned a lot through Devin's book - it was such an eye opener to say "wow. that's ME!"

    I, myself am a realist. Hate phonies. Have had horrible experiences w/ doctor/etc. Have never been on med's before. Big on 'natural healing - took homeopathic remedies many times! But, at this point in my life, I would be sucidal w/o prescribed pain reliever - I thank God I have it so I can function to my full potential for ME - right now. Also, having xanax, to releive me of anxiety and relax muscles has been a lifesaver. Some people have chemical imbalances in the brain and need medication to feel better.

    So, It's great that you tell it like it is for YOU, but we are all not you. Everyone has to go out, educate themselves and find out what works for them - don't discourage them from reading a book where they might find beneficial information for THEM, please! Besides, you admitted to not have reading Devin's book, so how can you call it the 2nd worst book on FM? There are 1000's of FM sufferer's who disagree with you, so maybe you should read THE FIBROMYALGIA ADVOCATE and then form an educated opinion!

  6. blondieangel

    blondieangel New Member

    No.

    Allie posted a longer post after the first one.
  7. majic

    majic New Member

    i wasn't going to respond to this but i have got to. all mel is trying to do is let people know that they are other things that we can do. i was like you when i came here. at first i didn't think i had fibro and the docs just wanted the cash. then after i did accept the fact that this was real and that i had to do something about. i started reading and talking to medical and herbal folks. i researched and kept trying about everything i could just to get help.i was dead against giving up my meds and my docs.if some one told me 3 months ago that i could function in life with out percocet i would have called them a lie. now for 3 months i haven't taken pain or muscle relaxer's. i don't take anything now but the zma 30 minutes before bed and it is like a miracle. now that i can rest i can try to lose this weight that i have gained. i know it is not healthy to get the cookies and a good book and lay in bed and say poor me. i need to help me. i'm lucky that the only med problems that i have is fibro and no other med problems. i was told that i'm bi-polar and manic-depressive. well i have proven that to be wrong. sometimes on this board it is hard to accept what works for others when we are still in pain ourselves. this was my problem. i was so angry that everyone thought that ti was just so easy when iwas fighting like hell to get better. doing everything my docs said to do. i just hadn't found the right doc for me then. now i feel like i'm on to recovery. no hard feelings towards anyone for trying what works for them. gosh it must be nice to have the kind of money that it takes to see those expert docs. my question is after all the money is spent and all the drugs and supplements are bought how many patients are working 40 hours a week and feeling good everyday and can do what they want to do. this is where i'm at in my program now. good luck to all who is looking for better health. majic
  8. Mikie

    Mikie Moderator

    Good for you. I'm so happy for you. The ZMA is incredible.

    Love, Mikie
  9. blondieangel

    blondieangel New Member

    I just read your post and I honestly don't understand where you got "I was like you at first, and thinking that I'm angry" I haven't gained weight, and I don't "lie around in bed eating cookies" either. Nor do I have money to see specialists and buy supplements as you said.

    I just stated that what works for one person may not work for another, and that I didn't understand why Mel thought Devin's book was so terrible when he hadn't even read it. There's educational tools within the book, so why discourage someone from reading it?

  10. blondieangel

    blondieangel New Member

    W/o going into a laundry list of MY health issues, injuries, etc....

    I just read all about ZMA. It's wonderful that it works so well for both of you. Perhaps you had a zinc, magnisium, B6 deficiency, and now that it has been restored you're feeling better! No matter what the reason, it is a supplement, and whether or not a medical person told you to take it doesn't matter - you found what helped YOU, which is GREAT! My endocrinologist told me to take these things long ago, and I have.

    I have an aunt (related by marriage) with what we call a 'mild' case of FM. She's stiff in the am, and feels run down sometimes, but she works full time and spends time w/ her kids and grandkids.. When I tell her about me, she's very empathetic, but she feels no where near what I feel. It's completely foreign to her!

    Again, we're all different, and came about w/ FM in different ways!
  11. blast

    blast New Member

    I too could not have made it through my diagnoses of FMS/CFS without the help of both of Devin Starland's books. After I started reading them I said oh my gosh this is real and this is me, now let's make a plan and deal with this DD.
    I take my share of perscriptions meds and if someone else doesn't have to well I am very happy for them. Without them for myself I would have commited suicide yrs. ago.
    Just wanted to add my two cents!
    Blast
  12. blondieangel

    blondieangel New Member

    I've never met anyone w/ or w/o FM, who didn't benefit from reading THE FIBROMYALGIA ADVOCATE - I may not agree with EVERYTHING, but the positives far outweigh any differences in opinion. Besides, she is a doctor w/ FM, so she knows what we go through!

    I'm lucky too, that my neurologist has more than one colleage (sp?) suffering w/ FM - so he's no skeptic!
    [This Message was Edited on 10/05/2002]
  13. allie2

    allie2 New Member

    Tietelbaum does not just use medications. He has specific treatment for each patient. I am on many vitamins, a special diet, and begin exercise and muscle release in 8 to ten weeks. Many people who have fatigue problems cannot conditon themselves until their body gets the appropriate meds, hormones, or vitamins. If they tried to exercise without them, they would crash and burn. For example i had a low chemical that my brain produces. The fact that my brain was not producing enough can cause death. Therfore, I take supplements until my body adjusts itself to make those things on its own. Then when my energy level allows I can excercise, stretch, and do muscle release.

    *allie*
  14. klutzo

    klutzo New Member

    Mel is correct, but sometimes we must be on meds first, as he also was, before we can do all those things he suggests, which I agree are necesary. When I first tried to exercisewith FMS, my heart raced to the point where I would fall down on the floor gasping for air. This was true, even though I had been running every night after work before I got FMS. It took 1 1/2 yrs. of Xanax and Inderal for me to be able to start the program of exercise that eventually and slowly got me off the Inderal and enabled me to reduce the Xanax dose by about 1/3 in winter and 2/3 in summer.
    MEL - are you taking a Manganese supplement for your tinnitus? 10 mgs. daily can often help this. I'm sorry you have to take a strong drug like Klonopin for that.
    Klutzo