<<< Elsa, RE: AMA >>>>

Discussion in 'Fibromyalgia Main Forum' started by orachel, Oct 11, 2005.

  1. orachel

    orachel New Member

    Hey there! Yep, you're right! I've been on a bit of a rant lately. And the AMA is an amazing wonderful organization that is ESSENTIAL in regulating quality care for all medical problems.

    Partly this was influenced by a book I read...Devin Starlanyl's The Fibromyalgia Advocate....I assume you've read her work...she's quite cutting edge, and quite frankly I haven't had enough time to do a truckload of research (esp with recent MAJOR fog issues! LOL), but Mrs. Starlanyl's theorys (and she is an MD, and a fellow sufferer of many years) just seem to fit my situation EXACTLY...more than anything else I've read. But when I get a bit of info from one source, I go hunting for how that info was supported.

    Here's why the recent issues with the AMA...not in reference to anything other than FM/CFIDS/MPS....I haven't read the exact pertaining text in its entirety, but have gotten multiple bits and pieces from different sources...haven't figured out how to "find" their current publishing on the matter. But here's the problem as I understand it....In last 4 mos, I've been to an internist (was my pcp), 2 rheumatologists, a physical medicine doc (now my hcp for fm/cfids/mps) and spoken to INNUMERABLE other local docs...this very well may be an issue that is somewhat local to me.

    But as my other post said, I've gone 4 mos with pain in 7-9 range...while unable to work, do much of anything...virtually resting (except I don't want to become deconditioned, so I do funny little hobbly "laps" around my house! LOL and have been trying to maintain my aquatic therapy a few times a week, but my physical therapist is basically telling me (she sends me the reports she sends to docs and ins company's) that while I'm positive and hopeful and willing to do the work, I am not responding at all well to therapy. My pain and fatigue levels are simply too high at this point. Simply washing, dressing and driving (though I can no longer drive due to fog and simple DISTRACTION of huge unrelenting pain!) and putting on swimwear, and spending max of 15 minutes in pool doing the VERY lightest possible exercises (things like rising to my toes 10x in a 0 gravity environment...very very mild) cause so much pain and fatigue that it VASTLY overweighs any positives I might get from the therapy.

    I'm such a mess right now that 15 minutes of therapy, or sitting in a docs office for 1/2 hour, can literally have me bedridden for a few days. The pain is simply unrelenting.

    At first, I kinda bought the line that these drugs I'm on take time to work, and to hang in there. But its been 4 months. I can literally FEEL the physical toll this pain is taking on my body...not to mention my personality (as you've clearly seen LOL). My mother died in great health completely unexpectedly at 36 years of age due to cardiac arrest. I was diagnosed last year with a relatively benign heart palp condition. But I've read so much about how high levels of pain can affect the body so hugely! One of our members has had 2 strokes directly attributed to years of constant pain! I'm just terrified, basically.

    Anyway, all of these docs told me (because I ask a lot of questions in my appts) that their current treatment for FM/CFS/MPS (of which I've been told I have all 3...all wrapped up and making each other worse...again Starlanyl makes a HUGE distinction between fm and mps...I totally agree with her theory on that!) is never ever to include narcotics of any level, only physical therapy (and we've seen how well that worked! LOL...I have very high hopes for it in the future, but I've gotta be able to lift my limbs without squalking to get benefit out of it! LOL), and a myriad of antidepressants and muscle relaxers (am on zanaflex, 6mgs...seems to do very little other than make me slightly drowsy before bed...and flexeril (just flat out didn't even notice the difference on that one). I'm on 400 mgs (maximum dose!) of Ultram, and Ultracet gave me a very weird reaction....

    The bottom line is that these docs are most likely highly competent...very skilled hcps. The problem is that the AMA is literally further behind on updates to incorporate new studies and theories about fm/mps/cfids than even the FEDERAL GOVERNMENT. These are docs with extremely busy practices. Their updates to latest treatments come from ama journals and publications, as well as info and studies brought to their attn by pharmaceutical reps.

    They just don't have the time or interest to read any of the recent studies into fm, etc....

    At this point, I am a 30 year old woman who is flat out virtually non functional. I'm a take charge kind of gal. Every moment I have when I'm not too foggy to read or write I spend here or researching....I know that I am responsible for taking control of my own medical care. My pain levels are simply too great to respond to any "non medical" (visualization, etc) techniques which I'm quite experienced in....literally cannot "focus" my mind thru the pain. Its just wretched.

    So I've spent all of the time interviewing these docs, asking them their views....they say they understand how disabled I am at this point due to pain and will do anything to help me...will actively work with me to come up with solutions....I don't expect miracles right away. But I CANNOT wait years for the "right" set of treatments to be stumbled upon to suddenly relieve my pain.

    It is literally making me into a person I do not want to be! I love my husband more than anything, and I've literally been snappish with him due to Just being flat out exhausted from the pain. Plus, I cannot help but hold myself tight to try to breathe thru the pain (again...just makes the situation worse...progressive relaxation doesn't even work).

    I'm not a drug seeker. I've never been in a situation like this before. But it irritates the bejesus out of me that virtually ALL of the researchers and md's who spend their careers as advocates for conditions like ours flat out disagree with the AMA's stance on pain control, physical therapy (not that shouldn't do it...simply that must be very very mild until pain is under some level of control), etc....

    The bottom line is that I KNOW I don't have another 6 months of pain like this in me. I flat out know my body cannot handle it. And these doctors say all of the right things in the interview, and as soon as a few mos go by and clearly their treatments aren't providing any measurable relief, suddenly I'm getting "sorry...there's nothing more i can do for you. I won't give you narcotics because of the current ama standards of care for FM. You aren't responding to treatments I've given you, and you'll just have to live with it."

    Not this chiquita! No way, jose! LOL My frustration arises from the fact that when faced with significant research (cause hey, if I was a doctor, and a patient took the time to give me research compiled using scientific method to possibly broaden my horizons, I'd be open for the knowledge!) that I provide, they simply have no interest. So suddenly, the doctor who committed to work with me and do everything within their power to contribute to the strongest standard of life for me while we both work hard to get this under control....they're suddenly "hemmed in" by outdated AMA information on our disease.

    I'm willing to try just about anything to contribute to my own health...whole foods, getting rid of yeast, castor oil rubs, supplementation, etc...but all of that takes energy and stamina. Research into this wacky disease that's totally turned my life (not to mention my poor husbands!) upside down....that takes energy and stamina too. And every single day I'm faced with this teeth gritting, rocking and moaning pain is one more day that I cannot do a dang thing to work toward a successful plan of health for myself.

    I know there are wonderful compassionate doctors out there who do truly understand how VITAL it is for us to maintain the best possible quality of life while striving for "our" treatment plan....that's the only way to get thru this with mental faculties intact, imo! But I've now been thru this multiple times...asked the right questions, gotten the right answers, and then gotten treated as a disposable human when the AMA method didn't work with me, and they flat out don't know what else to do to help me...and just aren't willing to listen to any suggestions I make, regardless of the information I have to back up my suggestions.

    I've called over 50 docs in a 300 mi radius, Elsa! I couldn't get thru a 300 mi car ride (as a passenger...can't even drive now due to fog and distraction from pain!) if you paid me. I literally cannot find a single doc who will even consider prescribing anything stronger for me, even though I have letters from the PHD I see for pain mgmt, and my physical therapist both saying that the only hinderance I have to making the most effective attempt at wellness I can possibly make is INSUFFICIENT CONTROL OF MY PAIN. It's literally robbed me of my life. I don't need to be pain free, but its not fair to me or anyone else in my life that there isn't a conversation I have, or a move I make, or a decision I enter into that isn't primarily motivated by limiting my excruciating pain levels. 7-9 (with a WHOLE lot of 10's thrown in!) for 4 months straight...even while resting....Its driving me batty! LOL

    Sorry for the "thesis", but I kept realizing that I was encountering the same arguement with each doctor. First its "i don't believe in narcotic care for any fm patients regardless of disability or severity"...then with prodding its "well, the AMA doesn't feel narcotic care is warranted for your care at this time".

    The deal here is that I am an individual, with individual needs and individual goals...and I need to be treated as such. Unfortunately, similar to the guys who figured out that ulcer was caused by viral infection and were practically laughed out of the medical community...right up until they proved it and were given the nobel prize....

    Sometimes the AMA just isn't quite up to date on all the latest studies and protocols. It would be impossible for them to be. Let alone with something as invisable and untestable as our conditions.

    I don't intend to let that lack of current information ruin my life, but unfortuanately, I'm frustrated because at this point I don't know what the heck I can do about it!

    I am dying to find a doctor, even one totally uneducated about fm etc, who's willing to work with me, and help craft solutions to this together. I know that this is nowhere near as strong as I can be. I refuse to accept this level of "non function" for the rest of my days at 30 yres of age....but I cannot do it alone!

    Any ideas? You always seem so darn on the ball! I just don't quite know where to turn next, but I do know that I may as well put my head under the covers and leave it there, because without proper pain management, I've done nothing but go downhill in 4 months...

    Please, open to any advice!
    Hugs!
    Rachel
  2. orachel

    orachel New Member

    Thanks guys!

    Rachel
  3. orachel

    orachel New Member

    for elsa...thanks all!
    Rachel

    Trying to respond to a very valid question she asked me, and want to make sure she sees my response...

    Hugs,
    Rachel
  4. elsa

    elsa New Member

    First honey, take a very deep breath. Relax and chill out for a bit. I can help you if you'd like, but I don't want to impose, so let me know. ( I know your post asked for suggestions, but I'm just making sure. )

    In the mean time, put down your research books ... especially your current one. It's stressing you beyond what your body can handle.

    Many of us have gone before you. Rely on us a bit. You don't want to hear this but it has only been 4 months since diagnosis. Give yourself a second to breath and stop thinking so hard for a while. I can help, I promise and I'm not talking hoodoo treatments. Just let me know.

    Take care,

    Elsa

  5. orachel

    orachel New Member

    Absolutely open and accepting of any advice you can offer. Responded to you in a different thread, but wansn't sure if you saw it...I'm definitely a bit more calmed down now, and my other post to you explains why...

    Thanks again for all advice...
    Many hugs!
    Rachel
  6. orachel

    orachel New Member

  7. orachel

    orachel New Member

    Sorry all, don't know her schedule on here! LOL
  8. elsa

    elsa New Member

    Responded on your other thread. Warning ... it's long, but entertaining!


    Sorry it took so long to get back. Problems with the board earlier and then got behind in my schedule.


    I hope my rambles aren't too difficult to follow. Flag me down if you have any questions.


    Take care,

    Elsa