Understanding my pain

I have always thought of myself as an informed consumer of medical treatment. Here is what I have learned about me, and pain lately.

I had a doctor who grew to actively dislike me. I kept feeling that he was not believing me and making light of my issues but my T kept saying no, it was in me. It isn't. I am so glad I left him.

I had complete spinal MRI a few years ago and I listened to what the docs gave me for info and didn't ask questions. Turns out that I have many, or several more issues then I was told. New doc told me and is ordering new MRIs as the ones I have disagree with eachother on cervical spine. The results alone explain so very much of my pain and I just listened and followed along like a sheep. BAAA.

My new doc took me off Neurontin and is building me up on Lyrica and I am in a bit of pain. Everytime I have come off neurontin I feel so much pain. I have nerve compression everywhere. I don't stand up for myself well. I hate conflict. I feel I can't stand up or I get beaten up but the truth is I think I wear a giant V for VICTIM on my forehead and docs sense it and get off on being powerful with me. Not all, just some lacking maturity. I didn't tell new doc that I was worried about coming off Neurontin. I am doing it because I do trust she knows what needs to happen and 30 pounds it gave me.

I am scared of pain now. AFRAID. She asked me why I left old doc and I had to be honest and say cause he treated me like a nut case and she said;"with your MRI'? Yeah, cool.

I need to grow a spine, pardon my puns. I have to stand firm but the reality is the docs have the power and I need them to be on board with me. I need to learn how to do this. I am okay with having some pain now because I trust that it will get better. I need to go back on Lipoic acid.

So, anybody have ideas about how to be more firm? What to do with my feelings about docs and my findings? Thanks.

I wish I could help on that one hon but I too do not stand up for myself very much. I am switching drs so I can get what I need. good luck hon with the new dr.

Yes, and that you also have body language (needing a new spine) is connected, just like we are all mind/body! I think once you do stand up for yourself, you will begin to manage your pain more easily too, and with professional help, make it fully bearable!

Write down what needs to be said, don't worry about format or "order" to it. First get it into writing. You might want to take a few weeks to do this, adding things as you think of them, changing wording as you hear from other articles or news issues. Make a list of your needs and of the complaints you have. (You will probably find that they are connected or covered under a few maladies, even though the doctors haven't shared all that with you.)

Rewrite the needs and complaints. Get someone's help if you can, anyone with knowledge of how a doctor thinks, or medical terminology (a little bit) can help specify in their own terms what you are talking about. Educate yourself as much as you can with the areas of your concern, what other experts are saying etc.

Make an appointment for a "talk" consultation appointment. This is in their office and usually only 15 minutes, but ask to be sure.

Sit and read what you've written, if you can't share it by heart by now. Make the list so you can pause for a response, and also have a place to write what the doctor says.

If you are still ill at ease during the process, don't agree to anything yet, but say that you are taking the information and will get back to them about what you think is the next step you need.

IF the doctor begins to offer a new path now that you're educated and involved, then go ahead with something you know you asked for...if you are comfortable with them, then ask them if they are willing to work with you in finding the best solution for your pain management. (Write this down.) If all they want to do is refer you, ask them why. It could be they aren't comfortable prescribing pain meds, or maybe they've had a real issue with it and aren't allowed to or something for a time.. But if you want them to work with you on it, then ask them to, and not to refer you.. maybe put in a time to try it (a year) and if by then, you'll try another doctor etc....

Not all doctors are up to the challenge. Unfortunately, the chronic pain patient has no choice.

Thanks Sky and bebop. I was away for a few days. I get pain meds but it is not enough. I think the neurontin helped a lot and I am trying to figure out how much lyrica I can take. I need to re-read your post Sky so I can speak intelligently to it. I really have had a few tough days pain-wise. Yuck. Back to my own bed and more back support. Thanks again.

Hey, wisewoman, maybe you can do something like print out the Pain Assessment Checklist on the Lyrica site and take that in as a talking point with your doctor? I find if I have "props" to back up what I'm saying it helps me be a bit more assertive.

My doctor keeps trying to put me on stronger asthma meds which I don't want (I want to lose weight instead) and I'm able to stop him cold each time as they have side effect risks I refuse to tolerate (death or depression/suicide :-)

Just telling your doctor what you "want" or will accept/not accept might help. Doctors can be at a loss if things don't work very well so telling them, "I tried that med in the past and don't like/tolerate it well" or, "It hasn't helped me at all in the past, too much breakthrough pain" is helpful information without being particularly obnoxious. Like with most conversations, just stay with "yourself" and your knowledge instead of trying to make the doctor see your point of view. People can't argue very effectively with "I" statements as it's not trying to get them to do anything, it's just telling them about yourself.

I know my health history and my genetics, etc. and not having anyone die before age 74 when I'm only 57 has so far kept me off high blood pressure meds (and it was my great grandfather who died at 74 back in 1928; everyone in my grandparents' generation were mid-80's and my father's sister just turned 87 and my mother's brother will be 96 this November :-)

I make sure I have basic facts about my age-related, chronic problems (genes only get you to age 60 then you're on your own) and after a discussion or two getting to know one another, my doctor is in a "support" role trying to help me help myself with his knowledge rather than trying to force his knowledge on me.

That is good advice. I need to think about the whole Lyrica thing as I am very much hurting in the past 2-3 weeks. I have been feeling nervous about aging lately so your post spoke to that. I feel like I am too young for what is happening and the spinal stenosis scares me. I am doing what I want to but not for long as the back starts in. I have an MRI weds and don't get the results till I go back in three weeks. I guess that is okay since it is not going to change a whole lot except my own and the doc's understanding of where the nerves are most compressed. She seems to be pro-surgery but I would have to be convinced the benefits outweigh the risks. Thinking of back surgery scares the heck out of me. It seems to be a whole lot on my plate right now. As for your asthma Perna, I would like to hear more about what meds you liked and why and which ones you don't like and why.