Living with Myocarditis

[JTucker7]

Hi all

I was diagnosed with Myocarditis back in December 2021. It's 6 months down the line and I am still waiting on results from a MRI scan. I still feel down, low on energy and it quite often has a negative impact on my day-to-day life. Is anyone else feeling the same? Thank you.

[Milkfairy Heart Star]

Hello JTucker7,

I am sorry you are feeling low at the moment.

There are a few members of the forum who live with myocarditis. Hopefully they will be along to share their experiences with you soon.

I had a mild episode of myocarditis 10 years ago. I am left with a small patch of scarring on my heart muscle which shows up on my MRI scans.

You need to rest, rest and rest.

Very careful pacing of your activities and a gradual return to exercise.

Living with any heart condition can be emotionally and physically exhausting and feeling low and very tired is not unusual.

Have you spoken to your GP about how you are feeling?

Cardiomyopathy UK has some information about myocarditis.

cardiomyopathy.org/about-ca...

[JTucker7 in reply to Milkfairy]

Thank you very much for taking the time to respond. From what I have read rest is the best medicine but I take comfort in knowing it is not just me feeling this way.

My cardiologist app is in August so hopefully more will be revealed then!

All the best.

[Sildan]

My son is going through the same thing. Its both worrying and demotivating. I am just set on keeping up with gaining information wherever I can and just keeping pressure on to ensure we can get some progress. He is 26 and they have done MRI to diagnose sent us a medical explanation that is not telling us why how or what . Very un unsatisfactory. I've now got an appointment to see our doctor in TWO WEEKS!. Maybe that we be another avenue to get a better plan of the way forward. Just feel lost and frustrated at the moment. Keep up the pressure to push for a more detailed explanation of your condition. Wishing you well

[JTucker7 in reply to Sildan]

Thank you for taking the time to respond. I am sorry to hear that your son is going through the same thing as me. I have been pushing for my MRI results and I am hopeful you too get the answers you need soon.

All the best

[CrazyLif]

I have now been living with Myocarditis for over 1 year now. Like you I have been left with scaring on my heart, but they say that it should not effect the way I feel now. I do feel better now than what I felt like most of the year, but still not back to my normal self - and yes it still has an impact on my work and private life. I do not know how long full recovery will take, and as myocarditis is a rare condition most of the doctors don't know either. I do agree with the previous comments, as far as I have found rest is the best medicine. Basically don't be a hero and let your heart heal. I know it is frustrating, but hopefully it will all be better in the end. Good luck, and try to keep going - you will get there.

[JTucker7 in reply to CrazyLif]

Thank you very much for taking the time to respond. From the comments and what I have read rest is the best medicine. I'm glad to hear you are feeling better and I hope you manage to get back to full health and be your normal self.

All the best.

[Aamh]

i went through this age 26 last year

From delayd covid. Life will get back to normal. I live life normally travel to many places. Before this was up all night worrying

Having a strong mind is the hardest. Get apple watch monitor your heart rate. Try stay healthy. Dont excercise for while and stay away from normal stress

Been 18 months only issues i have is random tingly feeling but is all