I sympathize greatly with your frustration, we all do. No matter how different;y our disease manifests for each of us, the fear and frustration are the same.
Im 35. Recently diagnosed. Had tailbone pain and nick pain when I was 20, which went away after about a year. At 24, suffered mind-blowing fatigue for 2 years with minimal low back pain and "tired" muscles. That resolved slowly over another year or so. 6 months ago, BAM, night sweats, everything hurts, nothing works right, and voila diagnosis.