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.

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Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

Aussie

judenic
judenic
I am new to this group. My diagnosis was made three months ago after EMG and muscle biopsy. Reading everyone elses account I am not badly off. My CK peaked at 960 and I am down to 20 mg Prednisone. I have mild muscle weakness but can do everything still. I returned to work in October part time but increasing my hours each month. What I find hardest is the isolation of this disease. I have been a nurse for 30 years and never heard of PM and now I am living it alone except for the others I have talked to on this site. Anyone here from Australia that would like to share their experiences
deleted_user
deleted_user
Welcome Judenic, you have found a great support group. It's a wonderful place to find information and be surrounded by people who 'get' you. I'm not from Australia but there is one other woman on here who is.
Maruska
deleted_user
deleted_user
You will also find many nurses. At my support group last month we had 10 with DM and we were 4 nurses and 1 doctor. This is a great group of folks. so sorry you now qualify to join us. so glad you can still be working. I am still working hard to be back to that kind of shape. 8 months and still improving most weeks.
Welcome, Shawna
deleted_user
deleted_user
Welcome!!
I was only diagnosed with PM a year and a half ago myself.
Everyone on this site is great...we all share stories, complaints...anything that makes you feel better.
Like you I can live half a normal life. My CPKs peaked at 16,500 when I was hospitalized.

Welcome!! This is a great place..it has helped me SO MUCH
deleted_user
deleted_user
Welcome to our group and this is a great supportive group - I am so glad you found us! I hear you about the isolation - that is why we are hear for each other! There are two women I know from Australia on here and I'm sure they will post. I am so thankful for this site as no one around me understands it as well. Hang in there!
Love Hugs and Prayers :-)
eddiesgal
eddiesgal
Welcome Judenic! I'm not from your neck of the wood, but understand your feelilngs of being the only one in the world that has this strange disease. As everyone already said so well, you came to a wonderful site to learn. I keep learning everytime I come to the site. Blessings,
Kim
nanny1611
nanny1611
Welcome, Judenic, to this PM/DM support site filled with wonderful people. I live in the U.S., but still understand your sense of isolation. This website keeps me going some days. The people here are friendly, knowledgeable, and supportive. We like to encourage each other. So stick around. I'm sure some of your fellow citizens will join in the discussion soon. And, remember, you're never alone; because we are here for you.
nanny1611
nanny1611
Welcome, Judenic, to this PM/DM support site filled with wonderful people. I live in the U.S., but still understand your sense of isolation. This website keeps me going some days. The people here are friendly, knowledgeable, and supportive. We like to encourage each other. So stick around. I'm sure some of your fellow citizens will join in the discussion soon. And, remember, you're never alone; because we are here for you.
judenic
judenic
THANKS for your support. I will keep on hanging in there as the other option is not an option really. Trying to be positive in everything -so big and beautiful on steroids- more of me to love. Can still get myself off the toilet so life is good. Thanks for all your input and I will watch this page. hugs
deleted_user
deleted_user
G'day Judenic, i'm an Aussie - from Melbourne. As others have said, this is a great and very supportive bunch of people, you need never feel alone here.
Just one thing, our way of measuring CPK levels are different from the USA and Canada. Mine at diagnosis was 1098 which was considered extreme, yours would have been quite similar at 960 - the norm is anywhere between 50 - 130. Anything i can help you with, i'm happy to do if i can.
freelee
freelee
Hi I am also from Australia - Sydney and I have PM, amongst other things. Hope you are having a good day.