Hi John and Monicasue,
It has been a very long time since I have been on the blog. Monicasue. I experienced similar symptoms you shared with us. Steps, tripping, getting out of chairs, into and out of bed, weakness in my hands, etc. I thought it was my arthritis. My Rheumatologist diagnosed me in July of 2018 with Poly Myositis and started me on 80 MG of Prednisone weekly. Nothing changed. Then in December, Mayo re-diagnosed me with IBM Myositis. The reason for the re-diagnosis was that Mayo used different dyes to test the muscle biopsies. I was told that there is no treatment yet for IMB except exercise. I have been moving towards an all plant based diet (albeit difficult with family not being on board). I am convinced that diet and exercise will make a big difference in my quality of life. There is the "Annual Myositis Patient Conference" scheduled for September 5th - 8th in Minneapolis. Are you planning on attending? I hope to find more information on issues such as the best diet, exercises and mobility support devices, progress on treatments, studies, etc. It will be my first conference. Also, the Myositis Association itself is a big source of information. Many states have local chapters that you can join. I highly recommend it if you have not already.