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Thread: Update!

  1. #1
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    Default Update!

    I saw my rheumies PA yesterday. She said I have a LOT of inflammation in my body. which I pretty much knew, u know the PAIN! anyway, she looked at all my joints, did chest x rays, ordered blood and urine work up and an echocardiogram. Since I have been having chest and rib pain again she wants to make sure its pluerisy and not pericarditis. She also raised my prednisone back up to 20mg. she wants me to do a slower taper this time back to 10 in a month. Hopefully that will help the inflammation go down and thereby relieve the PAIN! I have been struggling to keep a normal sleep schedule, but am working on it. I am so fatigued most of the time. absolutley no ENERGY at all. Really sucks! It snowing here today and I am not feeling very well. I thought I was going to have a good day, because I had minimal pain this morning but now I am starting to hurt pretty bad again so, so much for wishful thinking! LOL I see my primary dr. on Weds. so I think he will probably give me tordol shot to help. I just want to have more pain free days U know!
    Dx. SLE June 2009


    ♪ Jen ♪

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    Hi SC!
    I am sorry to hear that you are feeling so yucky today. It sounds like the PA is giving you the care and concern you deserve and I am glad to hear that. Rest up, relax and get some sleep. Hopefully tomorrow you will have a better day.
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Hi Sandy,
    Me too! I really like my rheumys PA she is really nice and caring too. Also very thorough. Here it is 4:36 am again and I can't sleep. I really hate being in soooo much PAIN! I hope you are doing well, or at least better than you have been. Take care!
    Dx. SLE June 2009


    ♪ Jen ♪

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    Wow! It sounds like you're really going through a nasty flare. I'm so glad the PA is listening to you and giving you thorough exams and follow up care. I don't have any sleep secrets except a bit of Nyquil. It does dry me out a bit. Plus, if I have to get up early for work, I can only take 1/2 dose or I'm groggy in the morning. It's the one thing that I can take to deal with DH's thrashing about.

    I hope you get some relief soon!

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    yeah this has been a really nasty flare, but I am not in a wheel chair like I have been in the past. 1 1/2 yrs in a wheel chair. this flare started in may and still going strong unfortunately! I can't take nyquil it keeps me awake! so does benadryl! I wish I could work! My Dr. put me on Social Security 9yrs ago. They won't let me work and it sucks, because I don't have anything to do, not that I can right now! But you know what I mean! anyway thanks for all the support!
    Dx. SLE June 2009


    ♪ Jen ♪

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    hi smokerscat, how are you feeling today? I hope the flare is giving you a break, and that you can sleep. I have trouble sleeping when on prednisone. So sorry to hear you were in a wheelchair awhile back. What caused you to have to go into one,. and how long were you there. So glad you are out now.
    Phyllis

    share a smile today

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    Hi, smokerscat, I am sorry to hear you are in so much pain. I hope the flare eases up pretty soon. I hope you have a good support system to get you through the worst of it.

    I honestly did not realize that lupus was so incredibly painful. I am learning a lot on here. Wishing you better days. ea

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    Smile

    hi smokerscat i am sorry you are having bad flare i am glad though you are getting some support i what it is like to be in wheelchair i was for 6months last year now use walking stick and frame phyllis isright if you are on prednisone it is difficult to sleep i only average a couple of hours a night if i am lucky i found since i do not work and are at home my rheumi said to take naps during the day when i feel tired the fatigue is so terrible i tried everything to drinking warm milk staying up later not drinking anything with caffiene in the end nothing worked and rheumi was worried so he prescribe me valium and told me to take only as needed it was the only thing that helped for awhile but i am reluctant to keep on taking so i am just trying to perservere. i am in bad flare at the moment so the pain also prevents sleeping i hope you are feeling better soon hugs kim l

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    what caused me to go into the wheel chair was RA or so they thought! I had horrible hip pain that made it so I couldn't walk at all! It turns out in SLE... I have a lot of inflammation in my body. I hurt all over and really bad! What started this flare is I was on Remicade for 8 or 9 yrs and it suddenly burned out... It just stopped working! So after it quit they tried Enbrel and did a bunch of test and x rays. They found that I had SLE instead of RA. The enbrel we found out I was allergic to. so they stopped that. Put me on plaquinil and prednisone. So I am still waiting for things to kick in. The Dr. thinks that what makes this flare so bad is the remicade stopped working. That gave my body a overload of symptoms and here I sit! oh goody!! This sleep thing is really disturbing to me! I really just want to sleep at night and not during the day! SO FRUSTRATING!!

    Thanks For all your support and ideas.
    Dx. SLE June 2009


    ♪ Jen ♪

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    It really is difficult! I have tried everything too! Yeah I really hate the fatigue TIRED ALL THE TIME.... REALLY SUCKS!! I hope u start feeling better soon too!
    Dx. SLE June 2009


    ♪ Jen ♪

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