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  • What does onset of polymyositis feel like?

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    Old 01-10-2016, 12:41 PM   #1
    lisalcsw's Avatar
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    lisalcsw HB User
    What does onset of polymyositis feel like?

    Hi all, I'm Lisa. I'm in the process of awaiting blood work to see if my symptoms are attributed to Myositis. I have Sjögren's and Lupus. Just wanted to know what other's felt or experienced before being diagnosed.
    Thank you and gentle hugs.

    Last edited by lisalcsw; 01-10-2016 at 12:43 PM.

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    Old 02-13-2016, 11:14 PM   #2
    MumsieScott's Avatar
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    Re: What does onset of polymyositis feel like?

    Hi Lisa. I may not be the best qualified person here to answer your question because I'm new here and I have been just diagnosed but I have decided to wait a bit before doing a biopsy so my diagnosis is not "set in stone".

    For me the first symptoms I felt was muscle pain. It started in my calves one day, then my lower back the next, then my abs and finally my thighs and arms and shoulders. Not all at once so I kept thinking maybe I had overdone it while cleaning or something. The pain is very similar to the pain you feel the next day after working out. There is a constant "feel the burn" and fatigue. At one point I thought I was coming down with the flu but I never got a fever. The areas of pain hurt to the touch, just like a bruise. If you are waiting for the blood test the CPK levels is what they are looking at. Mine started off at a little over 600 then more than doubled in one week to 1,239. Good luck and stay positive. It's been a good 9 weeks since I discovered my fist symptoms but I'm trying to remain positive that proper treatment will help me get back to a normal life.

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    Old 04-29-2016, 12:45 PM   #3
    UNCMom1964's Avatar
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    Re: What does onset of polymyositis feel like?

    I was diagnosed with polymyositis in 1993. I had all the associated test and final confirmation with a muscle biopsy of my thigh. Since my numbers were off the chart (in the 3000), I was initially treated with an aggressive dose of prenisone, followed my methatrexate, and finally with Imuran. At one time I was taking three Imuran tablets a day. I am now down to one. My symptoms include weakness in my limps; hard to walk up steps, raise my body from a sitting position, and actual position my body in bed. I have other conditions that add to my problem. Now the polymyositis presents me with over all body whit muscle aches, charley horses in arms and legs, persistent leg aches at night, and inability to lift pots and pans. I hope this helps.

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