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Thread: Sort of newly diagnosed, or...3rdly, but a 3rd Rheum

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    Default Sort of newly diagnosed, or...3rdly, but a 3rd Rheum

    Hi guys,

    I know I wrote long ago about when I was diagnosed with RA/Lupus and possible connective tissue disease. I had seen 2 specialists, the first one was great but he ended up leaving, the second one just didn't listen to me, and I recently saw a third after over a year of waiting.

    She did an entire physical like I knew she would, and what was weird was this time, unlike the first time, she didn't find any swelling on me anywhere that was noticeable enough to see and feel. All she found was extreme exhaustion, and VERY sore and tender muscles and deep tissue all over and the fact that I can barely stretch, yet I have no strength issues.

    She is pretty sure that I do NOT have RA, which is GOOD, I am just confused. Lupus is still in the back of her mind but she feels that I have Fibromyalgia. RF has gone down from 24 to 15, but that's all I know of for now as it's the long weekend and the haven't finished putting up all my blood work results on the website. I told her I have joint pain, muscle pain from had to toe, chronic extreme fatigue, always running a temperature of 99-99.5, can't grip very well with my hands, hurt so bad some days I can barely walk, that things crack, that I have brain fog, she again said Fibromyalgia.

    I will be going back in about 2 months for another appointment, as she said she doesn't want to make a final diagnosis until she gets all my blood work back in and sends me for a bone scan to look closely at my bones and joints.
    I guess its better than having RA for sure but its still crappy overall. She won't put me on any new medication for pain until she knows what she's dealing with, so I am left on 1800mgs of Ibuprofen once a day like I've been on for a while, but plaquenil and all those types haven't worked for me.
    I don't want to lose my disability status because of this change, as I am supposed to let them know of any changes so it's scaring me. I CAN'T work full time, or for someone else, I don't have the strength, I feel like shit day in and day out, ugh...I'm pretty sure Fibro IS a disability anyway.

    I want to work in the future, for myself, running my own business from home, something that I can handle, but for now I'm in NO shape to do anything.

    This sucks, but it's good....I think.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    hunniebun,
    did the new rhuemy get a full list of your symptoms, (in your words), or only what the doctors gave her.

    because she is new to you, you need to give her your full history.

    start a pain diary, including the problems you have with not being able to work.
    make sure she knows you are already on disability, and ask her to write you a letter for the disability department.

    also remind her of all of your drug trials, what works for you and what does not.

    bring her up to speed with what you have done, so she does not have to redue everything.
    she will only read what she wants, but at least you can try.

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    She talked to me for an hour and wrote down everything I said. I feel more comfortable with this person than I have with the first two I tried because she is a researcher for the arthritis centre of Canada in Vancouver. She actually studies these diseases so I was very happy to have been referred to her. It just wasn't what I was expecting to hear really, and I may be worrying about the disability thing for nothing, but that's what I do, I worry. She does know that I am on disability and she stopped talking for a few minutes when I said that, but like I said, I worry, sometimes too much. I worked so hard to get on it and I do NOT want to be taken OFF somehow by the gov you know? Just because I have a new name to something, doesn't mean that how I feel has changed.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    I no Dr. but 1800mg of IBU at one time. Might want to read this that could do a number on your stomach and your liver
    Ibuprofen has a dose-dependent duration of action of approximately four to eight hours, which is longer than suggested by its short half-life. The recommended dose varies with body mass and indication. 1,200 mg is considered the maximum daily dose for OTC (Over The Counter) use, though, under medical direction, the maximum amount of ibuprofen for adults is 800 milligrams per dose or 3200 mg per day.[citation needed

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    I'm not sure I understood what you wrote there, but I don't take the full dosage they want me to take anyway. I take the Ibuprofen when I feel I need to, otherwise I have pills, they are too hard on my stomach.
    I feel like shit all the time and the pain is there all the time. I don't like the possible diagnosis switch to Fibromyalgia now, because I still have those weird blood tests with the positive ANA of 160 speckled, the Anti SSA positive, ENA, sm/rnp...I DON'T want these blood tests to be ignored, they lead to autoimmune disorders don't they?
    Just frustrating...I see her again Nov 1st.

    Here's what I saw in my latest blood tests that were done near the beginning of september. Not sure where I am supposed to put this actually. There were a bunch more but they were all negative, I am posting the ones that are positive because I think I have seen others talk about these too. Plus the rest of them I don't really understand and my whole lab is too long to post here.

    ANA Screen

    POSITIVE
    Titre: 160 Pattern: Speckled

    DNA Double Strand Ab 23

    ENA Screen POSITIVE

    Sm/RNP A MODERATE POSITIVE

    SSA A STRONG POSITIVE

    Rheumatoid Factor H 15
    Last edited by Hunniebun; 09-27-2011 at 03:00 PM.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    Sorry i reread my post and was not written well i was just concerned that you were (or i thought you were taking 1800mg of motrin at once) my point was that you are only supposed to take 800mg at one time. 1800mg is a really high one time dose sorry

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    2, 600mg pills a day, I meant 1200 sorry.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    I just dread going to my rheum doctors. It's the same show, different town each time. Right now I'm being treated for Lupus and now have increased swelling throughout my joints. My pain doctor told me I have bursitus all over my body. I certainly believe him as I have so much pain throughout my body. Still, please be very careful with the motrin. Our organs don't need any help as they try to destroy us! Touch base with your internist and see if that doctor concurs -- of course, then you get in the battle of who's actually right. Good luck and God bless. These pain diseases aren't for the faint of heart!

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