Speaking of the "new normal", I wanted to hear from anyone who's had myocarditis - what was your recovery journey like?
Did you anyone have very long recovery journey?
Has anyone been told "you'll have to live with these symptoms for a long time or maybe for the rest of your life"?
I certainly feel I may be on that path i.e. having to live with symptoms like chest pain and tightness for a long time, even though on paper I'm "ok". Would be interesting to see if there are others like that too.
I also have had myocarditis in the past and the recovery has taken many years and occasional symptoms still manifest under physical or emotional stress. Practicing meditation and some other slow exercises has helped. Good luck!
I have had fluctuating hstropT for 2 years since Covid infection. This test indicates some heart muscle damage is occurring. Highest level was 52. Normal is less than 14 Cardiac MRI suggests small localised scar lesion consistent with localised area of damage.I rested for 9 months then started gradual exercise which gradually increased in intensity.
I have periods where I have low grade but definite localised left sided chest pain that does not last long - seconds to minutes -and comes in cycles lasting 3 to 7 days then disappears for some weeks.
At times, even after a week of intermittent but definite pain, the hs trop has been only slightly elevated so I suspect the discomfort may be caused by pericarditis which often occurs with myocarditis.
My exercise level is adequate and a recent holter moniter while exercising showed some SVT but no sinister arrhythmias . My maximal heart rate on that test was 152/minute and I am now 75 so I think I will just live with this as it does not interfere with my life.
Note, I tried colchicine 0.5 mg daily for 4 months and it did nothing for the discomfort. Voltaren 75 mg twice daily seemed to help
That's a good point I didn't think about - physical / emotional stress. I'm glad you've found some methods to help ease the pain. Thank you for that!
Dear Granolawithasmile, I had the same condition that you have. I rested for about two weeks, and applied some pain relief gel on the heart area. I hope you get well soon. Kind regards Rabbit55.
Sounds like a rapid recovery! Greaat stuff. I'm glad it was swift for you. Yeah pain relief is maybe something I could use too.
I hope you stay well and safe too.
Thank you
After a year of acute myocarditis (to my way of thinking, rather stretching the definition of “acute”!) from late 2022 to late 2023 I very gradually got better. The last perfusion MRI I had in Jan 2024 showed minimal endocardial edema, no remaining inflammation, and no scarring. The lack of scarring is what the cardiologist said made the difference, and he also said that my adherence to his “total rest” protocol was what made it such an “easy recovery”—-his phrase. It didn’t feel easy to me at all. I now walk 2000 to 4000 steps a day, gradually working up. I do twice daily stretching and balance exercises. Soon I’ll restart weight lifting and swimming. I had started swimming too early and got reprimanded with chest pain, so we’ll see how that goes. All I can say is, rest a lot more than you think you need to! And be very gradual in returning to activity. Good luck, everyone!
Appreciate that insight. A gradual improvement has paid off for you. Yeah I definitely need to listen to my body a bit more. Gladly I've started to walk more as well, it's generally okay, but if I overdue it , I'll pay for it the next day lol.
Been trying some light wall push-ups and stretches. Let's see how that goes.
Good luck !
Hi, I had Myopericarditis and was in hospital for a week wired up I was getting 34,000 extra ectopic beats and they did loads of tests including MRI on my heart. Showed inflammation of the lining of my heart and my heart. It took a few months of rest then a CRT-D device fitted so more rest to get over that - as you can imagine having no exercise for all those months I was very week. I then went to cardiac rehab and they were marvellous for 8 weeks gentle exercise increasing slowly and I felt much stronger. I do as much walking as I can now and feel so much better x
Wow that's remarkable, you came out as a winner after such a challenge. Glad you're feeling much better. Thanks you for sharing that.
Hi there
What a scary journey you have been on . I too I walked this journey and never ever thought I would return to any type of normality . Hang in there it will come , as others have suggested rest rest and rest let your heart recover and you will get to were you want to be . I didn’t believe it possible . As a nurse who is used to running round like a looney , it was a big shock . It’s taken me 8 months a phased return to work and I have finally done it very slowly .
I do her pain which is aboartbofvallmif this and a few funny moments . I just slow down when this happens . Eat well sleep well and gentle exercise to begin with . X
Thank Bluecauli for your response, that's exactly what was rolling through my mind- that I won't return to my normal self. But thankfully due to many responses from yourself and others, I'm seeing that it is possible and it just may take time. Each on their own journey. You take it easy too, I know nurses are super active people so please take it easy.
Good luck
There’s an excellent book I’ve read for anyone with myocarditis. It’s called The Unexpected by Kayte Alexander. I think it’s only available directly from her website. It helped me a lot and has some helpful ideas on how you can manage the condition. Best wishes to you.
Oh that looks like a good read, I'll definitely try and get my hands on that Thank you Bahamasgirl
Thank you for this ….., it can be a lonely journey !!!!!
I know right, gladly we have this platform. Feel free to reach out as your not alone.There are plenty of people here in the same boat.
Hang in there. I found the book very helpful. You’re not alone! Keep the faith you will get there. Best wishes.
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Thanks everyone for your replies…..
