My seven year old caught me crying over my keyboard while reading the John’s Hopkins website on Myositis. "Mom, it says, ‘medical treatment’, what happened?” I hear his sweet, innocent little voice say. I wipe my tears and tell him, “Nothing happened, it‘s just that my hips and my shoulders and my elbows hurt and I’m just reading about how to make myself feel better“. That seemed to satisfy him. He gave me a hug and went back to his cartoon.
About 50,000 Americans have myositis; apparently even rarer than scleroderma, this autoimmune inflammatory muscle disease is also incurable. I will soon start another immunosuppressant medication to try and bring the pain and inflammation under control. I am waiting on DNA test results which will tell me if I am susceptible to a rare and dangerous side effect before my rheumatologist will proceed with treatment.
In the mean time I am back on prednisone and bummed because I just finally weaned off of it 3 months ago and it took a long time at a reduction of 1mg/month. Now I have to start all over. Prednisone, although a precious miracle of pain relief at the right dose, comes with a host of unpleasant side effects like weight gain, irritability as well as dangerous side effects like kidney failure. So not a good thing to be on long term especially at doses higher than 10 mg/day.
What I learned about myositis on the John’s Hopkins’ website is that there are important lifestyle changes to make. For example, they recommend following a doctor-prescribed exercise program which might include physical therapy, whirlpool baths and gentle massage. Resting and pacing, and limiting activity is very important. Working with a nutritionist can be beneficial. And my personal favorite, reducing stress is vital, such as with yoga or biofeedback exercises
I’ll order my Jacuzzi tomorrow, right after I quit my job, see my therapist, go to yoga class, see my nutritionist, have my massage, buy a lottery ticket and stop at the food bank.