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Thread: First Rheumy appt

  1. #1
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    Question First Rheumy appt

    Hi everyone.

    I am new here and have my 1st rheumy appt on Thursday, I have not been diagnosed yet but lupus was mentioned.

    So I woke up saturday feeling great after last week feeling exhausted and joints hurting and swollen.

    So my question is how can I make my rheumy believe my symptoms when I feel great right now?

    I feel so crazy when I feel great, like all those symptoms were in my head, that is why it took me 2 years to finally see a dr about my episodes, because once I get over the pain/exhaustion I feel great and wonder if I am crazy

    I also have an appt with a Hematologist for my low WBC.

  2. #2
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    I know how you feel on the 'crazy' feeling. I went 10 years of normal blood work and off and on joint pain and I've JUST recieved treatment and somewhat of a diagnosis.

    Since the timing of appts. and crummy feeling almost NEVER correlates the way we like it, I've learned to be somewhat of a drama queen.. I make sure and accentuate how miserable I was during the flare or bout of pain and explain how severe it was and that it 'put me on the couch ALL day' even if it only did for half the day. I don't like to lie, but sometimes, you have to sit there and drill it into their heads until they hear you. If you get to the end of the appt. with no answers, make sure and mention it again. I always say, "SO, what am I supposed to do for the _____????".

    I'm having the same problem as you right now, so I'm still learning how to express my pain even if it isn't there. I also try not to look all prettied and made-up.. It hels your case sometimes LOL.

    It's sad we have to try SO hard to prove to our own doctors how miserable we are.
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

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    I was specific with dates things started to let him know how long it had been going on and what I did to try and elevate the pain like ibuprofen which of course does nothing. And Lexie is right, embellish if you have to. I didn't have to with my doctor but a lot of people on here don't have such good luck getting their doctor to listen to them. Let us know how your appointment goes. Good luck!

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    hi and welcome.

    a few things that have helped others.

    a pain diary has proved very helpful.
    it is not the thing to start now....
    but write down what was hurting and what did not.

    look up pain diary on the internet to find examples.

    also make sure that your rhuemy has a copy of your recent blood work.
    there is a reason your white count was low.

    read a few of the older posts.
    they are our personal experiences with lupus.

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    Thank you everyone so much for your replies.

    So I was kind of disappointed in my appt with my rheumy. I went with typed out family history, symptoms, blood work and she spent 10 min with me not looking at anything I brought. She didnt even look at the paperwork I filled out while there. I told her what was going on trying to explain that I feel good this week but going into detail what I feel like during an episode, but she just got this glazed over look and kept trying to interrupt me to go on with her exam on feeling my joints. All she said that she could see my toes were blue in the cold room.

    Then she said with my low positive ANA I either have Lupus or sjogren's syndrome. She will do bloodwork and call me in 2 weeks with the results. If negative results then I might be a person whos normal is joint pain, positive ANA and Low WBC. ughhhh

    I told her I had an appt with an Hematologist that my GP wanted me to see for my low WBC and she told me they wont find anything lots of people have low WBC thats their normal and my GP shouldnt have done that. ughhh then I told well i have never had low WBC before and my GP ran my bloodwork again 2 weeks later and I still had low WBC, all the rheumy said was "oh"

    Sorry for my rant, I have just been frustrated with the appt. I knew this might happen from listening to other people but she just seemed to look at me and make up her mind that I was fine without asking me anything or even asking me about my medical history which includes IBS, nausea, GERD, anxiety, and heart palpitations. My mom said maybe she is just a dr who doesnt like to say anything until blood work is here. I dont like that I want one who is upfront and listens to me.

    I guess I will wait and see what my blood results show. Does the indepth bloodwork show negative if your not having a flare?

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