I don't know that you can treat by the CK alone but my doctor didn't let me start Physical Therapy until my medication was working and my CK was stable. Otherwise, you risk injuring your muscles more. That said, he didn't have any problem with me walking. They do say, use it or lose it. The trick is to not work out too much.

Even when I was really sick and unable to lift my arms over my head my doctor said I could go for short walks, I did that and they were short! My legs would not allow more. I also started doing taichi and qigong, I got a dvd on it and joined a class that was taichi for people with serious medical conditions, extremely gentle. I used to be very active, swam a mile, kayaked for hours, did yoga. When I was really sick I couldn't do any of those and not even yoga because I couldn't get back up off the floor because my quads were so weak. My doctor just said no 'strenuous' exercise which is kind of funny because that would have been impossible for me at that time. I also tried swimming and was much sicker the next day so I listened to my body and held of on that until I was getting better, now I can swim 20 laps again! Three months after I started my medicines I was 'cleared' for physical therapy and that helped me get my strength back. There is information on the TMA website about current research and exercise, check it out. I think some gentle walking could only be good for you for digestion, circulation and flexibility.
Hugs
Maruska

I don't know what the experts say, but I know what worked for me. I was told that I was ready for a wheel chair. Instead, I asked the doctor for a prescription for physical therapy. I couldn't do much at first, but I progressed to the point where I was actually using real weights instead of the the bands. Once I started exercising, my mood improved tremendously and at the same time, my physical status improved. I can't say there was a direct link. It could have been a coincidence, but exercise seems to help my symptoms. I just have to be real careful to get the rest I need, even if that means that I just work out once a week or so.

My doc says that exercise is encouraged but that you really need to pace yourself and know your limits. Personally, I have recently started Yoga again which I have done in the past and loved. I found a Yoga DVD for people with arthritis which I really like. It shows all the poses modified for sitting, using a chair for support, and the standard pose. My last rheumy though told me not to exercise if my CK's were high as that can cause more muscle damage. So obviously opinions vary.

Thanks for the replies im just wanting to get back going im a outdoors person and this condition hindering me from doing the things I used to do but im ready to get back on the right track with my treatment so thanks for the replies and keep them coming.....

My understanding is that you need to be stable to "exercise". That is because the muscles are not rebuilding when your CK is high. That being said you do need to move, stretch, walk as other have indicated. When I was at my worst just taking a shower and getting dressed was my exercise for the day. Start slow and rest when fatigued. Do what your doctor says but also listen to your own body.

Lucky if you listen to Dr. Lundberg at TMA conference on video from TMA she describes why the recommendation was no exercise in the past, that she researched it and had a group of patients who would not stop exercising and they did better as a group so she studied the theory and found not exercising is an old recommendation not based on scientific fact. The only thing they knew was that Marathonners after running 26 miles had high CK levels too, so it was just supposition. Even marathon runners get back to gentle walking and jogging within two weeks.
Many doctors only know what they read in Medical school eons ago, and what they learned was not based in science.

Her talk on TMA can be found at:
http://www.ustream.tv/recorded/17337864
then she demonstrated the exercises and that was recorded too
This program can be done at home
this is the link to her paper handout:
https://www3447.ssldomain.com/myositis/pdf/Home%20exercise%20program%201.pdf

Exercise has been a huge part of my recovery. I do walking and yoga range of motion every day. I have progressed from Water workouts at Physical therapy to land exercises with bands and machines to home exercises and treadmill and now some light weights on a weight machine i have access to at a friends.

always seeking the most up to date scientific information
Shawna

Thanks shawna good information... I was told to listen to my body and NO MORE WORKING OUT THROUGH THE PAIN FOR A GOOD BURN HAHA! I think the main thing is to pace yourself & listen to your body. This is a journey "PACE YOURSELF"!

Isiremy, that is also good advice... do know that there are racial differences too. Some of us here know an african american man who is doing great, working full time and working out at over 1000, which is way down for him but seems to be holding steady.

We really don't know what the CK means, it is a byproduct of broken down muscles, but not all DM/PM has high CK, so it may be normal and still have severe disease, then following your body is best.

I had to work really hard with a neuro-PT guiding me at first, then i could feel the good and bad of overdoing it.

My best to everyone, this is a very hard road to be upon.
Shawna

Thanks for all the advice it means alot just trying to gather up alot of info to let my doc know so we can move forward with my treatment because it looks like we are at a stand still right now because my insurance looks as if there are not going to approve the infusions so right im just a little down about the situation but Im not letting it get the best of me, thanks again for all the replies mean a lot.....

hi my doc told.me do as much excercise as i could. i do isometrics and intense squats as they are the best two muscle building excercises as shown by world famious.body builders and a bbc horizon doc on tbe othernight also loads of info on you tube i also use testogel a testosterone gel carnitine, creatine available.from holland and barret.

I was in hospital in the ICU unit and they started me on physio straight away.If it wasnt for Physio, I dont think Id be walking again. I was on 60mg prednisone at the time and I was very sick. I have read that with PM its important to keep the muscles moving. I personally dont think that some light excercise is going to be bad for you.

I've been suffering with high CK levels for over 10 years & after seeing specialist & having a biopsy my doctors are none the wiser they just say don't over do it when I exercise but it doesn't matter how little I exercise I still get bad muscle pain. Why have they not mentioned this drug prednisone or other ways to naturally lower ck levels with food.

hi, i have polymyosities for 25 years i try to make whatsapp group of people who have polymyosites that we can share things online by phone group. if you want to join sent my an email oshratna@netvision.net.il