I am in the boat I am in today because of misdiagnosis & the problem not being treating properly, according to the doctors who are treating me now.
So yes for the first time I took litature in & ask respectfully if this could be part of the problem, I explained that I felt I had to look into it on my own because I wanted to contibute any information I could about my symptoms, & lets face it 3 yrs & I am now a cp patient with not alot of hope for getting better. Well I took this info. to my pt & my osteo & both of them said indeed it could very well be a big part of what has been bothering me & that particulair area is often over looked. I think there is a time & place for a patient to take these measures. I definantly believe if you are getting no where with your doctors it is time to step up & be your own advocate. Do I think we should try to self diagnosis, of course not, but I do think there is nothing wrong with questions & research if it helps you better understand. I think it is all in the way you present it. I have dealt with many doctors because of my line of work & have seen things that have blown me away. In some ways I am ashamed that I was not more persistant in my own care.
I also can say first hand the the older generation are more fearful of questoning the doctors & put alot of faith in what they are told. I just dealt with that today also. I had an older gentlemen who would not speak up about his care, he did not want to question or upset the doctor, even though he knew the care he was receiving was inadequete.
Then again I read an article in the doctors office in a magazine telling people how to best prepare for a visit, in that article which I ask the receptionist to make a copy of it adviced you to indeed be you own advocate.
As far as the women thing goes, well I have seen news specials on the difference in care & even funding for research when it comes to men & womens health care. Man or women we all deserve the best care we can get.
My husband personally volunteers very little info. to the doctors, I do go to any important appointments with him or he tends to have selective memory. Just thought that thread was so ironic giving the fact this is the first time I have ever printed & gathered my own research to take with me to the doctors. Yes I have some what changed when dealing with doctors, but I am sure anyone in my shoes would be the same, but to each their own. Respectfully, Sammy
One thing I learend - being stoic, the stiff upper lip, dont complain, downplay your pain attitude doesnt get you anywhere.
Its pretty obvious, if you dont tehh the doctor how bad it is, s/he isnt likely going to offer you the relief you need, but for years, I would do that, and walk out with a scrit for Naprosyn, or be told to ask the paramacist for some OTC headache pills...
And these things take time. Sometimes you have to spend time setting the stage. I learned this from my therapist who was so helpful to me when I had been detoxed off of the fentanyl and needed to get something new. I had given up, having learned that I was gonna get screwed no matter what I did. I was in a really bad place. She taught me how to start slow, show compliance to treatments that haven't worked in the past but are needed so the doc can show a ladder of escalation from the NSAIDS, ultimately to opioids, etc. Drop hints along the way so when you bring the subjects up again later it won't come as a surprise to the doc. Learn how the doc works, what his/her preferences are, what it takes to get him to consider ideas outside of the box - all these things. This can take months of preparation but the payoff is worth it.
I would not enjoy having to start all over again with a new doc, but I think I understand what to do. And the most critical element is being your own advocate. Others can support you, but there always comes a time to stand up and be heard. Oftentimes this is when respect is earned, if one's approach is measured and reasonable.
The one final item in my toolbox for self-advocacy is to speak the doc's language. Doctors are scientists first and foremost. They speak in objective terms, and work best when results and goals are measurable. This is why I so often recommend that folks keep a pain diary and record their pain scores regularly. Even though the selection of a score is subjective, the fact that numbers are used to represent subjective measures is right up the doc's alley. Setting goals using numbers, like having an average daily pain score of 5 once again communicates objective measures. Besides numbers, goals stated in terms of functionality also work. Most PM docs want to see their pharmaceutical therapy to result in increased functionality. Few are willing to dole out narcotics if the end result is producing or maintaining a couch potato. If one proposes treatment in order to achieve a certain pain level and to once again be able to do certain things like walk, take vacation, return to involvement with family - docs are much more inclined to agree with scripts for opioids.
This is how I see self-advocacy. It has worked very well for me.
The original thread was closed not because of the topic but in the manner it which it was responded to. Please keep all posts within the guidelines of the forum. Personal, ethical, racial, sexist etc remarks are not tolerated and will result in a permanent ban.
Hopefully we are complying here, I sure do not mean offense in anyway.
Steve & company, I think it is so important to listen & perhaps take into consideration what others have experianced. Learn from others & maybe it will help you out in the long run. I think we all dread starting with a new doctor. I always try to keep an open mind but always are abit apprehensive. A PM is abit different I think. That doctor will ultimantly have a hand in how you will live your everyday life with respect to pain levels & we all know by being members, a good one can be hard to find. I am keeping my fingers crossed & going to ask a couple of my doctors & express my fears. They can't read my mind so I might as well speak up. I so appreciate any advice or experiances shared, it is up to me to take what I learn & use it as I see fit. Thank god I have the tip of the iceberg understanding with medical termanology. I will get to know a doctor before I ever go in with any info. I gather through my own reserch, some are open minded some are not.
I want the people to understand here that this is a part of my life I don't share to often with others, so what ever is said I take as an opinion & respect everyones point of view. I am lucky to have found these boards & feel privledged to meet you all. Sammy
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