My Management Skills Are Failing.

Discussion in 'Fibromyalgia Main Forum' started by joeb7th, Feb 7, 2007.

  1. joeb7th

    joeb7th New Member

    Just wanted to share a rant today.

    Empathy and encouragement needed.

    I got sick 14 months ago. Started with a flu, then fainting, then a long term reaction to the powerful broad spectrum antibiotic "Levaquin." Previously called "The Big Gun."

    Like all of us here, I have suffered horribly since this time.

    Symptoms so disabling, painful, weakening, bizaare and scary. 12 to 15 ER visits, fainting, huge weight loss, then huge weight gain, tendinitis, asthma, etc. etc. tons of tests, several doctors. No main reason or cause ever found. Just as bad now as I was in the beginning.

    I have run the course locally with doctors in my area. Most gave up and promoted the psychiatric route. Almost all these doctors ever prescribed anyway was anti-depressants and anti-anxiety meds. And the more I complained about pain or other symptoms they couldn't identify, the harder they would push the AD's or sedatives.

    I believe many of them did this to make themselves feel worthy and more justified in charging me in their meetings with me. Like they were actually precribing something to help me when they couldn't find out what was wrong with me phsyically.

    But this psych escape clause route also seemed to relieve "them" in their own frustration (or guilt?) of not being able to find a physical cause for my problems. Certainly not me. I wanted help in identifying what was physically wrong with me. Not mentally. The AD's were just a numbing agent-band aid in this regards in my mind. Booze would do the same thing. Here...go home and get drunk.

    But also it was a none too subtle message to me that they were latching on to the psych diagnosis more than the physical. That in their minds I was more an emotional case more than a physical one.

    This is of course discouraging and even humiliating, even though I know my conditon isn't caused by depression and anxiety ( yes, you do get some of this due to all that the physical symptoms take out of you ) and I'll stake my 50 years of never experiencing this or expressing myself in this way to back this up.

    I have been shocked, amazed and dismayed at how often this " it must be your mental state" route has been taken. Can't these doctors just say they can't find out what is wrong with you physically and end it at that...without shifting their focus and blame to your mental state?

    I've got tons of boxes and bottles of psych meds. They've never helped the phsyical problems. And, the few times every few months I actually felt "physically good" for one day, my mental and emotional state just zoomed into the positive.

    That is a powerful message in my rational thinking mind about my physical versus emotional condition.
    And which one has more power and influence over the other.

    This has proved to me that my main problem is physical. And THAT AREA is what needs more study and treatment. Not the always pushed psych area.

    This psych route also stops doctors ( or gives them the excuse ) from referring you to perhaps a much more specialized university hospital for further study. This is my situation now.

    I honestly feel like I should be in some major university hospital where they could do much more thorough testing ( and do it all at once instead of tortuorous 2 to 3 month waits with different doctors who don't communicate with each other )

    Doing all this more thoroughly and all at once and comparing notes all at once would greatly increase their chances of finding something more conclusive I believe. Doesn't that sound rational? It sure does to me.

    This piece meal approach is so disjointed, exhausting and counter productive and is so filled with mistakes of doctors not getting sent records, doctors not really communicating with each other, doctors disagreeing with each other's speculations. I've had doctors say other doctors evaluations of me were not what they evaluated. But you can't get them together to find out which one is right or wrong!

    I have asked my insurance company if they could get me in one of these hospitals, and they said it would be up to a referring physician. And the few docs I have had have scoffed ( angrily dismissive ) at sending me to one of these hospitals.

    Everything from I'm not sick enough to they don't think it would do any good. And " don't you understand...your problems are more psychological in nature than physical!"

    I am effectively being blocked from being tested and treated at one of these facilities. And I have insurance.

    And after one year + of horrendous suffering...don't I have a right to seek more specialized care? I believe I do. But there is no one left to fight for you to get this. I've written my federal and sate representatives asking for help in this area. No responess at all except Baraba Baoxer whose e-mail was mysteriously deleted from my box in just one day!

    So now, I'm left to just suffer everyday with these frightening and disabling symptoms.

    I have tried to research holistic medicines and herbs and food supplements. I am exhausted not just from this nightmare illness, the Gulag " send him to the psych ward" medical treatment, The blocked access to better medical facilities but also the enormous amount of advice and products out there.

    I have hardly any money and some of these are expensive.
    I have tried a few programs but nothing has seemed to help and sometimes they make me feel worse. I am as confused as ever in this regards. And the discipline it takes to go get this stuff and to stick with them and constantly check to see if this interacts with that has just overwhelmed me.

    I am at a point where I must admit...I can't manage my own care anymore.

    It's a combination of exhaustion, discouragement,lack of discipline, confusion, financial means, etc.

    More and more I just lay here or in my car at some turnout. Close my eyes and try to forget everything.

    I will try to continue to find some hospital to take me in a look at everything all at once. But I have done this so many times with e-mails and letters so desperate sounding...Maybe 1/5th of the time I get a response and it is always a form e-mail that you are blocked from responding to saying I must be referred by a physician to their hospitals.

    And I can never find one willing to do this.

    Whew...what a rough time it is. And what a sad medical system we have here.

    Great for fixing easy to see problems...but a nightmare for anything more complicated. And there is only so much energy and hope left in each suffering person.

    I know all of you and I also have put in enough time and work trying to get better and better help it would be enough to get a college degree.

    Maybe this board and site should start issuing these.


  2. Hope4Sofia

    Hope4Sofia New Member

    I wish I could take it away. I understand your frustration. I don't know what to tell you to do next.

    My fantacy is that a Dr would admit me to a hosp so they could run a ton of tests and find the real problem so I could get better.

    Maybe we could help you out. What are your symptoms? What tests have you done?

  3. Rnclegal

    Rnclegal New Member

    Ive run into something similar in my attempts to get my disability pension from my place of employment. They have it in their heads Im claiming an orthopedic disease. I pulled up every information article on Fibro and ME that I could find and sent it on to the specialist who is a non medical person deciding my claim. In your case I would pull up the informationals and carry them with you so they the so called doctors know that you know what you are talking about and that you as a person with rights, have a right to proper medical care ( Can you tell I used to be a hospital surveryor)

    I have two wonderful physicians here in San Diego. When I first found my pain specialist I actually sat and cried because he was the first doctor who understood what I was talking about and going so he could treat me appropriately. My internal medicine doctor works together with my pain doctor for continuity of care. If you ever come to S. Cal San Diego I be happy to give you names of these angels that wear wings,

  4. Mini4Me

    Mini4Me New Member

    Very well written, JB! I've copied it off to share with hubby. We feel this way too. It's like the 7 blind men feeling different parts of the elephant and saying what they think it is.

    The bottom line is, I think, they are just clueless as to what to do with us. We are very exasperating patients!
    Best of luck in your quest...

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