By Nicci, Canada, January 25, 2014
Classified as a rare disease sufferers like myself are entirely frustrating by the lack of knowledge on this issue we fight against GP who scoff at us dont believe us and the pain clinics who want to shove a needle in our back which only creates more issues. Thankfully here in Canada we have an awesome specialist Dr.Murphy who continues to study the cause and effect of this rare disease. While no treatment is available here in this country yet we just keep working on making that happen.
My cyst has dislodged a nerve in the S2 region also causing my spine to form around the cyst causing me to limp all this took me from a fulltime worker to still fighting for disability even though my restrictions are no lifting twisting no prolonged (more than 1hour) standing sitting walking. It's no fun being in so much pain every day while fighting the stigma that I'm just lazy and exaggerating. I can no longer participate in things i use to enjoy and i have to plan my meds and my day around my pain. I just hang on to the hope that one day a procedure will be available that will give me a chance at having normalcy in my life again!!