Hey there @migizii. I love this story and am glad you shared it for other members to learn from. You seem to have a good handle of knowing how to live with CSS and its requirements in order more successfully manage symptoms. Good for you! It is frustrating, but there is hope.

Not too many doctors have knowledge or understanding of CSS, let alone know how to address it for a treatment plan. Thankfully your doctor did. Self-awareness is self-advocacy is real important for some whose doctors continue them on a wild goose chase. Even though CSS may not be the answer we had hoped to hear, at least it is a culmination that brings together multiple chronic issues and gives us understanding to move forward.

I'm doing much better since learning about CSS and how to work with it through lifestyle change. So many areas have calmed down and become more manageable since my prior chaos. The chaos period is called our "B life" in pain rehab...I'm now living my "C life" which is defined by being stable, moderate and flexible. It takes a lot of work and discipline, but has been worth it. How have you been doing since you posted? You were last going to process concerns with your PCP. How'd that go?