Advice
I have been struggling since 2024 when I was 25 years old. Wasn't being taken seriously until last year when I was hospitalised with pericarditis and a small pericardial effusion. The pain was unreal! Couldnt walk, bend down, cough, sleep or do anything without being in immense pain.
Long story short i have been hospitalised 5 times now as its recurrent which then turned into peri-myocarditis. I had an MRI which confirmed the pericarditis too. They have discovered its being caused by an autoimmune disease (They said Undifferentiated connective tissue disease) so have put me on prednislone, hydroxychloroquine, colchicine, mycophenolate. Everytime I come off of the prednislone or if I lower my dose I have a flare up and my inflammatory markers go up really high. Experience all of the painful symptoms again and end up back in hospital. Even when im out of a flare I constantly have a dull ache in my chest, palpatations and I do get a racing heart often. Cant exercise either.
I recently had another MRI and it says i have no evidence of active or healed myocarditis. I don't understand how that could be as when I was hospitalised I had all of the same symptoms I usually get when having a flare. Im worried they're not gonna take me seriously now. Anyone got a similar experience, im struggling to be honest