Progress of patsy 69

HI, thanks to all who suggested the Kate Gilbert book, so sensible. Just finished it and feel that I have taken the second step in the learning curve ,the first being this on-line community. This illness necessitates introspection because we have to think hard about exactly how painful it is, and where in order to explain it to doctors. Trouble is that

I, and I guess many of you then feel as though doctors think we are a bit neurotic.patsy 69

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  • Too true, patsy 69. The journey of coping with PMR is as much a psychological challenge, as a physiological one. Either way, you are in safe hands on this forum :-)

    MB

  • I am so grateful for my Rheumy. He takes time to listen, and is truly sympathetic - and often is kinder to me than I am to myself.

  • Hello Patsy69. I have GCA, not PMR, but a similar experience when it comes to doctor appointments, and there are a lot of them! Knowing what's important to say, having no control of the flow of the appointment, and feeling rushed; I always leave with questions unanswered. Having to focus on symptoms/side effects as they evolve, trying to articulate them and give them a valid "rating" in severity. And I find I've downplayed some in the past, just so I wouldn't come across as neurotic. But now I feel that's just plain not in my interest! I jot down as they happen the "wonderful" symptoms/side effects, an informal journal, by date and times. Like the diarrhea I experienced last night (sorry to take you there). But I don't know whether it's significant, or not. That's for the doctor to decide. At my next appointment I plan to make a list of all these "things", use it as a discussion focus, and leave it with him. In reports he has written about our past appts., he doesn't seem to be hearing what I'm saying. I hope by leaving it, it will become part of my file. I'm 14 months into this, and for the first few months it's very overwhelming (still is at time). I wish I had started a journal from day one, because aches evolve, in my case I think from the Pred., not from PMR. We get better at recognizing what is causing what, by listening to our bodies, i.e. whether it's our conditions, or our bodies responding to a lower dose of Pred. It IS a very introspective journey, on a number of levels. And one we hadn't planned on. Accepting this intrusion in our lives, and figuring out how to manage through it, takes time. But we WILL get through it!

  • Hi MChisholm,

    My GP looks after everything except the GCA but I always keep her up to date about it. When I see her for other things I make out a list of things I want to discuss/ask and make a copy. I give one to her and we go down the list. I include symptoms, drug refills, going over blood work (I get my results on line and she never seems to have seen the results), tests I need or want, results of recent tests, consult notes from other referrals,.....She tends to hurry the appointments so this seems to work because I am thorough going through the list. She puts her copy in her file and next appointment we do a new sheet but also check that the previous one has been dealt with. I also take articles for her to read and next visit ask her what her thoughts were on it. lol she can't get away with much.

    I have kept a journal and take it to all my appointments, it's especially valuable for new doctors as I have trouble remembering yesterday let alone a few months ago. I also give them copies of my latest blood work, tests, history,.....all of which they seem grateful for.

    Cheers

  • Thanks animi, for sharing what works for you! I read it over twice. The first time I thought, "you're awesome". The second time I thought, wait a minute, that's what I've been doing. Except for the last paragraph, which is brilliant! My GP appts are generally good, and like you, she treats everything but the GCA. My problem is my Internal Med Guy. We are not on the same page. So, thanks again for sharing, and I will incorporate what you do into the "plan" as to how to manage him, on top of everything else ;-). Appreciate it!

  • Glad my post was helpful MChisholm. It sounds like you're doing the same thing, great!

    I also will take a note sometimes too that describes my symptoms since I saw her and how it affects my life i.e. "couldn't get out of bed today due to headache ".....Maybe it's just my perception but a lot of doctors seem to like to read something instead of listen as their mind is more apt to wander lol. If they can actually read what your days are like, your pain level,.....it gives a good picture of what you're dealing with. I don't think it works as well to just say "I've been in bed with a headache for a few days" They need to see what your life is really like, how you had to cancel plans, had to sleep for 24 hours straight, whatever. I took this to my rheumy and she loved it, circling things, leaving her own notes, pointing at it and saying well here you had a flare and yourm CRP was x and you were on x mg of Pred......

    I should add that it depends too on what your doctor is like, how much you can grive him. I try to keep things relevant, concise and not overwhelm them.. New doctors have always been receptive to notes I take.

    Good luck and keep up the good work!

    Cheers

  • All great ideas. I'll let you know if a new approach works with my IM Guy. Thanks again. And all the best!

  • Me too patsy69

  • Hi mchisolme ,I have already started to keep a diary of symptoms and prod. Doses. l find this helpful and in time I hope to share it with GP. Thanks patsy 69

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