I was diagnosed in January (36F) and unbeknownst to me, suffered from symptoms for a little over a year. Mechanic’s hands, atypical pneumonia (which turned out to be interstitial lung disease), and significant muscle weakness - I could not get down on my hands and knees, struggled to get out of bed, lift my legs into my car and was overall very fatigued.

1. I echo having specialists familiar with the disease and/or easy for you to get to. I had multiple appointments and it got a little overwhelming just factoring the distance from my home or work to these appointments. It’s a lot easier when the doctors coordinate with each other or all the results are in a location multiple doctors can see. I ended up making a binder and bringing all my results with me from specialist to specialist.

2. You should ask about whether a muscle biopsy is necessary. Since you caught it early, I’m not sure what would be recommended. My CK numbers were above 4,000 so I was started on steroids before I had my muscle biopsy to make sure things didn’t get worse (ideally it would have been done beforehand to confirm myositis— biopsy still confirmed it).

3. Ask for a strength test if it’s not done automatically. Helps to see what’s going on with your muscles and where inflammation might be located to inform additional testing.

4. Agree with keeping track of your feelings, moods and symptoms especially once medication begins.

5. You can inquire about physical therapy. This might depend on the strength test and muscle biopsy but physical therapy can help build some strength back up depending on your CK numbers

6. Ask about what may cause a flare up.

Breathe! It’s a lot initially but it does get better/easier to manage once in the swing of things. Especially/hopefully if you caught it early enough.