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Thread: feel so unwell

  1. #21
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    It sounds very much like a Wegener's flare to me and if this is the case no amount of pain suppression is going to be of much use. If not treated, it will get worse.

    My own first symptoms occurred at the age of 30 and the sinus and joint pain prevented me from sleeping. I eventually reached the point where I told my doctor that I could not take any more and was giving up! Never be afraid to post about your troubles on here, many will understand completely and may be able to give advice or at least moral support.
    Jack

  2. #22
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    Thank you Jack.
    I have been on oramorph, tramadol, and codeine but nothing helps with the pain and swelling. I can't sleep, and I can't get my wedding rings off my fingers they are so swollen and painful. The thing is I can't turn up at the ER with joint pain, I have to wait until my cough gets too bad or something first before I can get help. This is rediculous. I feel as if i'm living my last moments at home. Ive sent my poor husband out to watch the rugby for a few hours, I don't want him to have to be my carer.

  3. #23
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    This is ridiculous Gwen. Is there not another way to get help? Can't you contact your Wegs doc directly?
    Phil Berggren, dx 2003

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    My wegs docs do little for the joint pain. It is a symptom of returning wegeners for me and it is the part of this disease I hate the most but if it is the only symptom I have then I am rarely treated for it and we just wait and see if it slips away or if the wegeners returns completely
    lightning crashes
    leigh

  5. #25
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    that's interesting. Whenever i've had a flare up before, i've never experienced joint pain before. I did wonder if my kidney function had been affected because of the amount of swelling and odema i've had, but that may be because of the steroids or general inflammation and my legs and ankles aren't swollen - only my face and hands / fingers. What happened to you afterwards?

    The NHS doesn't operate on weekends unfortunately, unless on an emergency basis. Will chase rheum up on Monday (if I can last that long). I feel like a bomb waiting to go off!

    Jack - would you say your WG has got a lot worse as you've got older?

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    I have had no kidney involvement so my joint pain has never been because of that but I would be concerened if i were you. They do test my kidneys when I have joint pain but so far nothing.
    lightning crashes
    leigh

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    Gwen, why can't you go to the ER and ask them to page your doctor? Surely he can be reached on the weekends-- or whoever is covering for him.

  8. #28
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    Gwen, sorry you are feeling so bad. I agree with everyone above. I ended up in the ER because my joint pain was so unbearable that I could not take it and could barely walk. When your unable to live like a human being , you need to get some relief. My Wegeners was flaring big time!

  9. #29
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    Gwen, I am so sorry for your pain. I remember how horrible it was, it's what finally convinced my docs to give me 50mg and not 12 of pred. With cyclo the pain subsided in a couple of weeks. When I went to the ER with the joint pain, swollen and red joints, all they did is tell me that as I am on steroids (I was on 12mg at the time) I should just take some NSAIDs. Grrrrr, if I knew then what I know now, I would demand a shot of high dose of pred. I am lucky that I have no side effects to any of the meds. but I have had my kidneys start to fail recently. Gwen, what was it that put you in remission the last time? I know how badly you react to cyclo, but if your flare gets out of control, it may be worse than before. I do hope you will somehow get thru this weekend and see your rheumy on Monday. I will think of you and send good thoughts your way. Keep well and visit often. Hugs.
    Jolanta

  10. #30
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    Is going to an urgent care care center an option? How about asking for a referral to a pain clinic for help with pain?

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