Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
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?
I've just started prednisone 50mg a day for the past week. I've lost so much muscle mass and feeling very weak. I used to be very strong, weightlifting and working full time. I'm really trying to get back some strength now. I have no pain really thank god just a little in my ankle and stiffness. Im working part time now. Im also doing the AIP diet now, Ive been vegan for 5 years so its a big change. I'm also doing gluten free. Im seeing a nutritionist and taking VitD3, omega 3, and a few other things. Im also a mum to two boys and 2 dogs which I find hard to walk with at the moment.
Thanks for sharing your story. Ironically, I just got my blood work back and I am STOKED that my Ck levels are at 1048 now. I started IVIg two weeks ago, so that’s what is working for me. I feel like a new man. But that is a trajectory for 10,044 a month ago, so obviously I’m doing better in relative terms.
Hopefully prednisone works fast for you and the diet will take care of the rest once you have it in remission. I’m part of a Facebook group and nobody seems interested in how much the AIP diet has helped. Of course there’s no way to know for sure what is the diet and what is the drugs at this point. All I know is when I cheat, I don’t feel nearly as good. Glad to hear you are on it.
Keep in touch and I hope you get it in remission soon!