an inflammatory myopathy that affects the muscles
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:http://www.assisted-living-directory.com/content/dermatomyositis-assisted-living.cfm
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 http://myositis.yolasite.com/personal-stories.php
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
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.
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