I was. And when I started PT, I was very careful to see someone who specializes in Neuro diseases. It isn't good to push too hard too fast.

In the beginning my rheumy said the same thing that I should just walk. He started me off with 20-30 min per day. I thought this was ridiculous too. At the same time I think we're all used to feeling like crap in the beginning with this disease before medications really start kicking in that when we're feeling like getting out and exercising I don't think we realize that we're still down. You know what I mean? I think our awesome is someone else's crappy day.

I'm so glad you're finally to that point though where you feel like doing more. That is just so awesome and I hope it only gets better from here!
Hugs,
Nicole

I have been told to just take it easy and lay on the sofa for now. Once the muscles quit deteriorating, then that is the time to start rehab. At least that is what I have been told. Do not rush its you may cause more damage.

Yes, I was told to walk in the beginning. I do know that at the time I was in full bloom of DM and my muscles were still deteriorating. Eventually I was able to start PT after the medications started to control the muscle lost. Don't rush things, listen to your body and don't try to do more than you can. It sound like you have a good doctor who has a handle on this disease.

Actually it is recommended that you do not start therapy until the prednisone or what ever anti-inflammatory drug you are taken has kicked in an has removed the pain. I have been in thereapy for 6 weeks, howver you should wait.

On another note therapy is the BEST. Just remember to listen to your body. A good therapist will continously as you if you are in pain, and if you are they will stop and instruct you to do stretches that will take you out of pain. Remember these stretches as these will become your best friend! Good luck to you!

Yup, me too. I was actually forbidden to exercise (back in my time they wouldn't even let me walk).

But once you can it's a must.

"I think our awesome is someone else's crappy day."

haha, that's totally true hopeful444!

I also asked about physical therapy and my dr. said I couldn't start until I had gone through several taper-downs of the prednisone, not for at least 6 weeks. He told me to walk as well. I think on the days that I feel good I get so excited to be a 'normal' 23 year old and not like I am 80 that I forget I am still sick. That being said, the days I wake up feeling awful and make myself walk I always feel better later in the day. Light stretching/walking every day is a must for me.

I think our friend CoreyC said it best - all the physical therapy in the world won't do much good until the drugs can get the inflammation down. Once your muscles are no longer under attack though, I suggest starting out with water therapy. I was diagnosed in mid April, but was only given the green light for PT from my rheum about 3 weeks ago and water therapy has been great for me because I can actually move without having to be conscious of falling. I haven't had a fall at all, but it's nice to know that I can move and try things out that I wouldn't normally attempt on dry land. If not, again CoreyC said it best - stretches do wonders as well ;-)

Question for DM people: Does chlorine affect your rashes? I would like to try water therapy when I am able, but I worry about undoing the careful work I have done to keep the rashes under control.