I’m so sorry to hear you’re in so much agony with this disease. I don’t know if you’ve seen this website or not but they have programs to help patients with CGD
https://rarediseases.org/rare-diseases/chronic-granulomatous-disease/
Other informational sites which might allow you to find some help.
https://cgdsociety.org/wp-content/uploads/2019/05/CGDS-Medical-Guide.pdf
https://www.medicalnewstoday.com/articles/chronic-granulomatous-disease
Are you on any type of treatment and seeing a specialist? Has there been any genetic testing done to see which mutated gene you have?