Some days I can't even make a fist


  1. Hi, I have found both of your sites about Myositis...I am wondering how to post a personal story from my family - on your yolasite? Thanks so much for taking a look - I look forward to hearing from you... my personal story is:

  2. Hi David, I will add a link to your story on my "Personal Stories" page over the weekend. This is great, always looking for more stories. Thanks for making contact

  3. Hello,
    Just found this by accident as I was researching on google to get more info on my myositis, mine is autoimmune caused they have not labled it yet as I have so many other overlaping autoimmune diseases. I have the constant pain in my thighs and upper arms, and hips my thighs and hips are the worst, my shoulders use to be worst but are a little better. What scares me is yesterday at a pulmonolgist for a different disease, they had me walk with a oxygen meter for six mins, I could not even walk four mins, I could not believe it without my thighs burning so bad and my hips I wanted to say STOP but kept pushing,. I am use to pushing as I feel everyday of my life I am pushing just to do what other people do with out thinking. I am also on Imuran and have been for two years. My rheumy lowered it down to 250 mg last nov and I can not help to wonder if this is why I am so bad all of a sudden. I do not know if I should wait to see if it just gets better or go in. I hate to go in unless I have too. But I do not want perment damage done either. Any advice? Also been swimming for a month now for exercise as every doctor I have tells me that is the best form of exercise for me. Hope that is not what is causing this. I am like you before I was dx I could not even lift my legs up to go up a curbing. I could not pull myself up my front steps at home to get into the house. I just bought a chair that is 21 inches high so I can get out easier. Lower forget it. I want to say also I do like your blog, I just started one of my own but mine is on autoimmune diseases called susies autioammune diseases clever ha ? lol well thanks for the good reading. Susie

    1. Hi Sue, just found your message! Thanks so much for taking time to leave it. I get flares like this all the time and sometimes I can see no reason but usually it is if I have overdone things. Pacing is the most important thing I have learnt. I will visit your blog now. Cheers.


Thank you for leaving a comment

Related Posts Plugin for WordPress, Blogger...