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Thread: feel so unwell

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    Default feel so unwell

    Sorry sorry sorry this is a horrible thread to post, but I don't know where else to turn. I feel so poorly, especially at night with terrible joint pain. My shoulders, wrists, fingers, and hips are all agony and i can't find pain relief to help. Ibuprofen is useless, and so is paracetamol and cocodamol. I'm on dex now (pred substitute), so i\m swollen and puffy (fat). I can't sleep because of the pain, and as soon as i 'over do' it in the day, i'm shattered.
    Got a dry cough, waiting for it to get bad enough to be admitted back into hospital.
    I'm so tired. I'm 30 years old now, don't feel as if i'm going to make it to next week. I\m so tired of being in pain. I feel awful for writing this because people have it so much worse, so please forgive me. It does get better doesn't it?

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    It is my experience that the pain of wegeners was the worst part. I understood that the other problems it caused me were the ones the doctors cared about and the joint pain was just a symptom but all I can tell you is there in my opinion NOTHING worse than waking up day after day after day to pain. You wake up and feel not too bad only to have it be full on a few hours later. Not sleeping due to pain makes the pain worse. I found little relief from any pain meds that I tried. That is actually how I know if my pain is wegeners related or not-advil takes away non wegeners pain. All of this leads to depression and therefore more pain. I was 30 as well when my wegeners pain was at its worse. One hell of a way to live your life. Do not feel guilty for writing this. We are all in the same boat here just different phases. Most of us have at one time or another been where you are and will most likely be there again.
    lightning crashes
    leigh

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    Thank you so much for your words. You don't know what a difference they make. Thank you X

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    Ive been down the same road with joint pain , were ever part of your body either hurts or feels so heavy.I changed to Tramodal when I was having problems and still use it when OA is particually sp bad. Usually takes about twenty mins to get the full effect .
    I use extra pillows at night to suppport the worse joints .that gives some relief.
    Hope you can find some thing that helps you soon. Please take care of you , rant away anytime .DEE x

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    Thanks Dee. Come to think of it when I was in hospital last week I was on tramadol and it helped a lot, but I don't have any at home. I will have to ask the doctor for some when I next go to clinic.
    Do you ever find that the pain eases when you're up and around in the day? It's the night time pains that I struggle with so badly particularly.

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    for me the pain was bad but tolerable while I was at work moving. As soon as i would start my end of day office work the pain would build and I would go home and not move-then it would get worse. What options do you have when flaring other than prednisone or other steroids? Since my initial 3 year flare up of wegeners I have only had smaller flares that prednisone does seem to chase away. I would imagine at some point steroids may not be enough for you so what hapens then.

    I totally hear you on the "I will wait for my cough to get bad enough to be admitted to the hospital". This has been the story of my health for the last year. At least in the hospital I can do nothing and not be looked down upon.
    lightning crashes
    leigh

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    I don't know what will happen when the steroids aren't enough (they aren't now). I suppose, it would be a matter of having plasma exchange, and cyclo again - but with doctors help to manage the horrendous side effects that I get. That I imagine would be worst case scenario. Before that, I guess I would be given 1g pred infusions to see if that would work maybe? I've never known pain like this in my life before, even when I was in ITU with lung and kidney failure. It worries me that if my joints are this bad now, what is lurking around the corner next.....

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    Quote Originally Posted by delorisdoe View Post
    . At least in the hospital I can do nothing and not be looked down upon.
    here here, I totally know what you mean.

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    I'm so sorry you're struggling so badly Gwen. When is your next appointment at the clinic? Can it be moved up? My doctor is wonderful by phone when I need something in between appointments. It sounds like you should give your docs a call.
    ~ Chris ~
    (Female )

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    Oh, so you can take cyclo. Were you on it for a long time before? I am curious about your side effects too. It does sound like you are headed towards some sort of relapse and that sucks but at least they know how to treat it and how to treat the side effects.
    lightning crashes
    leigh

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