hey everyone, sorry you’re all here but happy to meet you!
i thought it would be helpful for me and anyone like me new to DM/PM to hear some stories of how the disease has impacted some of the more pragmatic parts of life. I’ll go first.
I am a commercial construction electrician and in November of 2017 I started feeling like I couldn’t handle work any more after some time off at Christmas with no improvement I decided to check it out.
i was diagnosed in the middle of January and my CK levels were just over 10000. I’ve been on 50mg/day prednisone for about 3 weeks and my CK levels are still the same.
When I found out I started doing the AIP diet and I found the pain lessened within a week. I’ve been on that for about a month and the pain is pretty much gone but my weakness is still pretty bad. Getting dressed is hard and I get desperately tired pretty quickly.
I have been off work for about 3 of a total 6 weeks (prescribed by my Rheumy) and I’m starting to realize that going back to work might not be an option. I fell while shoveling snow a couple of days ago and that was a big eye opener for me.
I think a career change into a less physically intense career will be necessary, and I’m the only income in a young family of 4 right now. We just bought a new house too haha. Could be stressful, but I’m not letting it stress me. I have other employable skills, thank God.
How about you guys? Where are you at?
Anyone else with food intolerances? I am going crazy trying to keep on my restricted diet. I have intolerances to wheat, dairy, MSG, and salicylates. I feel much better if I don't eat these things but it's quite restricting as I can not really eat out and have to prepare all foods myself. I know a lot of people with autoimmune conditions who seem to have problems with wheat and dairy, is there...
Of course, as we all know with polymyositis (and perhaps DM. I don't know), the Quad muscles are generally affected (which affects getting up and walking, etc). Well, I'm no exception to that rule. When I was first in the hospital, my walking was actually fine. Granted, I HAD a few falls (which is what led me to leave school and come home to the hospital)...but I walked normally with proper knee...