u/SmoothHair9365

Hi all

Sharing a bit and hoping to learn from others.
About a year ago I had viral myocarditis, went back to training too soon, and had a recurrence. My latest MRI showed about 16% scarring (subepicardial, infero-lateral) but my EF is still basically borderline (~51%).

During my last visit the focus has moved from healing to managing long-term risk, including whether I might need an ICD down the line. Genetic testing is still pending.

If you had a normal EF but real scarring, how did your team handle the ICD question? I know that I’m in a grey zone as my EF is conserved but the scar burden is unfortunately above the ICD guidelines.

Not looking for medical advice, just real experiences. Thanks — this community has helped a lot.

Hi everyone,

I'm two months into a recurrence of myocarditis and honestly feeling lost. I'd really appreciate hearing from anyone who's been through something similar.

My first episode was back in July. Symptoms were mainly shortness of breath. I took no medication and didn't rest — and somehow recovered on my own, which I now realise was probably the worst thing that could have happened, because it gave me a false sense that everything was fine. No one advised me otherwise, so I continued with normal life as if nothing had happened.

Symptoms reappeared in January. A cardiac MRI at that point was clean, which made me suspicious but hopeful. Then things got progressively worse, and a second MRI in February confirmed active inflammation. No viral illness in between — nothing obvious to explain the trigger. My doctors believe the recurrence is linked to the first episode never being properly treated.

This time the symptoms are completely different: dizziness, muscle twitching all over the body, arm pain, jaw pain, and general malaise — none of the shortness of breath I had before. My bloodwork has been consistently normal throughout — CRP, troponin, everything. Because of the normal labs, I've been put on the standard protocol: beta blockers, eplerenone, and colchicine. Two months in, I've seen little to no progress.

What makes this even harder is that I'm going through it almost entirely alone. The people closest to me think I'm overreacting. No one around me takes this seriously. That isolation, on top of the physical symptoms, makes everything harder to cope with.

I'm struggling with a few things:
— Is this the right treatment when inflammation doesn't show in blood markers?
— Has anyone else had neurological-type symptoms like twitching and jaw/arm pain?
— How long did recovery take for those with a similar presentation?
— Did anything beyond the standard protocol actually help?
— Has anyone else had a first episode resolve without treatment, only to have a worse recurrence?
— How did you cope emotionally when no one around you understood what you were going through?

It feels endless right now. Any experience or insight would mean a lot.