Struggling with myocarditis

[wr71]

Went into hospital over new year and ended up being diagnosed with myocarditis. As a 21 year old relatively fit person it wasn’t something I expected to have to deal with. I’ve had to stop doing sports I enjoy and the worry of it is always in the back of my head. I know I was lucky it wasn’t worse but similar to how amputees have ghost pains etc, I am constantly troubled by feeling as if my heart is acting up again. It is making me feel anxious and depressed and I’m not sure what to do with it. I wanted to see if anyone else was having similar experiences.

[Midgeymoo17]

I am 21 had open heart surgery last july age 20.

Was it your cardiologist instruction to stop the sports you used to do? Or are saying you are not currently capable of them? Restarting activities I used to do was very important in alleviating the anxieties i had initially. I did not have ghost pains but do understand the wording you might be doing something wrong.

You could ask your cardiologist if they could make a referral to the clinical psychology team. Most major hospitals have them and they can offer support in coming to terms with such diagnosis or life changing events. They may offer there services through the hospital cardiac rehabilitation programme if you are on it but this changes from hospital to hospital.

[ChrisParry]

Hi, I’m 36 and was diagnosed with Myocarditis 6 months ago.

I too was advised to rest, I had to stop all activities including work whilst tests were carried out. I became very breathless at simple tasks like walking upstairs or taking a shower. This was then followed by chronic chest pain and extreme tiredness. I found I was sleeping for 18 hours every day. Sometimes my chest pain was so bad I was admitted into hospital only to be discharged a day or so later.

It’s very tough, I literally spent months just sitting on the sofa taking advice from Cardiologist and nurses at BHF. I couldn’t concentrate on reading so just had to watch tv.

6 months in my recent scan shows the Myocarditis hasn’t got any worse, it hasn’t got any better so I’m probably going to have to live with it for life but the good thing is it hasn’t got worse. I’m now able to very slowly start increasing my activities and yesterday I climbed a very small hill. I thought my heart was going to explode and it made me very tired but at least I managed to do it.

I’m still off work and may have to look for a less physical job if I am to return to work.

You can give me a shout anytime if you want to talk

Chris

[Sparklecake in reply to ChrisParry]

Sorry to latch on to your thread! I was diagnosed with this pesky condition 10 days ago and the tiredness is ridiculous. Spent all of yesterday on the sofa as I had literally no energy. The hospital never told me to expect this - I wonder how common it is??