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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My CPK Lowest ever for 10 years

freelee
freelee
I am so pleased my CPK is down to 211 and i am feeling so much better - less tiredness and no pain.
I have been on the FODMAP diet for gastric inflammation but it has seemed to help my Polymyostis. I know this may only be unique to me, who has always been told I have food sensitivities and intolerances, but thought I should let you know. I was recommended to it by my liver specialist and it is a University designed diet.
This is the best I have felt in 10 years. BUT it is quite a strict diet and when I try to add in foods I get bad pain returning.
Here are some links
http://www.gesa.org.au/consumer.asp?id=190
http://shepherdworks.com.au/disease-information/low-fodmap-diet
deleted_user
deleted_user
Interesting Freelee, so what do you eat. I looked at what they avoid against...
Says it is not a program for life, so what next??

So very very glad you are feeling better... Diet totally changed my life. Happy to hear the CK is lower too!!!
Have a great weekend...
trpt1
trpt1
Hi Freelee, Thank you for sharing the FODMAP diet. I agree with Shawna that diet has done a great job in helping my health too. Inflammation is a big issue with gastric issues and DM/PM. Diets that are anti-inflammatory are so helpful. I must watch sodium to keep it low for my kidneys & heart health.

I am glad to hear your CPK is lower. I wish you well on getting the CPK back into normal range. Diet, exercise & the right medication dosages & combinations are helpful.

Best WIshes
lexisgirl
lexisgirl
I'll chime in too. I've been on my "no whites" diet since January and I've never felt better. It's got to the point I can tell when I don't eat like I should. I never thought I would do a low carb diet but it has made a huge difference for me.

Congrats on your CPK! That is great news. I'm glad you are feeling better.
nanny1611
nanny1611
Congratulations on your CPK reading, freelee. That's great news and I'm so glad for you. Diet has certainly helped me also. I've heard a lot about the FODMAP diet recently and wouldn't hesitate to try it if being gluten-free ever stopped working for me. It is interesting to see how many of us here have found some relief in the right foods. In fact, a few weeks ago I purchased a Nutri-Ninja Pro to make healthy smoothies in place of one meal per day and am hoping to help myself even more. Best wishes for continued improvement and better health.
autumm
autumm
Well done Freelee. There is so much we can do to help ourselves. I am delighted you are feeling better, it helps so many at the beginning of this journey to know there is a light in the darkness. Best wishes to you. Autumm
freelee
freelee
So pleased to hear so many positives with diet helping people symptoms. Of course I still have the muscle weakness but a lot of the pain has gone.
I have been gluten free for years due to diagnosis by a Sydney hospital allergy clinic. The fodmap diet is more strict - no beans or legumes, limited sugars and limited fruits. I would not recommend it unless you have exhausted all other diets. My problem has been I cannot really introduce new foods back into the diet as I get all my gastric/liver symptoms again. Need to schedule app. with dietician but just a bit sick of visiting doctors at the moment.