Hi Im,
Dont panic - I was just like that and went into remission. Could not stand up, get up off a chair, lift my arms etc. My muscles are back I have DM not PM My tests were all normal but was diagnosed by muscle biopsy. Docs will listen or go to a rhumy with your story. Until you get your strength back hold the baby sitting down. I helped take care of new born triples when I was at my worst. LB

Hi Becly. You would be surprised at how many of us don't notice these things for a longtime and mostly we just think we are getting older. Because you have Anti zoo which is specific to Myositis your Rheumatologist should enable to start your treatment quickly. The delay in diagnosis is usually when the MSAs or Myositis specific antibodies are not there but Anti Jo is found only in Myositis. You will be pleased to know that the steriods help with the weakness and usually fairly soon. Because of your Anti Jo you will need something like Imuran as well but this is all to be arranged by you and your doctors. As you regain strength exercise will also help. Worry about yourself now and not the family,you must get well. I too had a new Grandson when all this began. I too could not hold him or lift him up, now we have lovely times together. Have you found a Rheumatologist yet. Best wishes. Autumm

Hi imbecky - I have had DM for a couple of years now - initially I had the same problems with getting up from the sofa and trying to get in the bath(I have given up that idea). Now a year on I am a lot better - still on MTX and Pred with Plaquenil but have regained more strength now. It doesn't last forever and you WILL get better.

Hi imbecky, You are at the beginning of PM which is the most difficult time. You must be patient with yourself. It took me three months at 60mg Prednisone and 17.5mg Methotrexate before I saw any improvements in my DM. I began the process of getting better over time.

CPK is not the only indicator of muscle weakness. My CPK is a normal 32. I will get muscle weakness from elevated ALT and AST scores. Check your liver enzyme scores other than CPK for muscle weakness. In my DM, a small rise in liver enzymes brings big muscle weakness. DM is a different disease process in many ways than PM.

Patience and asking for help to do tasks is very important. Do not put pressure on yourself to be able to do things if you can not realistically do them. If you need someone to pick up groceries, do dishes, help you dress, or drive then ask for help. This disease is a process and it does take time. I found that improvements come but not on my schedule. Be kind to yourself and patient.

During this difficult time, try to find the good things that you can pull from this process. I have a stronger spiritual life with The Lord thanks to DM. There are many positives that are learned so watch for them. You can find happiness and a contentment in things you never considered.

Best Wishes.

Thanks for the support. I have calmed down a lot. I can raise my arms in certain directions. So that's a good thing. I've been practicing standing up with no arms a lot today. I've known for a while that I can't do squats anymore, but I thought this was all related to running problems.

I do not have a rheumy yet. I am shocked at how difficult it is to connect with one. However, my neuro appt is coming up in a little over a week. So hopefully he will make a referral. Today, I reminded myself that I am grateful that I was/am a runner. Because otherwise, I may not have noticed this until it was serious. At this point I still haven't lost much.

normal :/ youll get it back! :)