Newbie with myocarditis

[Willow3006]

Hello. Newbie here. I’m 44 and I’ve just been diagnosed with myocarditis. I’ve had chest pain and really bad breathing issues even just laying down for months but every A&E trip they just sent me away saying I’m fine. I finally saw a private specialist who did an MRI and said I have myocarditis. He gave me colchichine and said to come back in 6 months but shouldn’t I be monitored? I’m worried because nearly every day I’m getting chest pain and it makes me think I’m having a heart attack! And my breathing is awful - feels like a constant asthma attack but my inhalers don’t do anything. I haven’t had any advice on what to do - I asked about exercise and he said I can but when I googled it said not to. I wish I hadn’t googled because now I’m scared and worried I’ll have a heart attack any second!

[Kristin1812 Heart Star]

Sorry to hear how difficult things have been for you. It’s a big shock to first hear we have a heart problem. Have you spoken to your GP, and asked the questions you want answered? You could ring our Heart Helpline team here on 0300 330 3311 Mon-Fri 9-5pm or email [e-mail].

They are very helpful.

[specific_apartment_7]

You should be prudent with the inhalers if you have myocarditis. The aim is to rest your heart so it recovers. Asthma inhalers make your heart work harder. So if it isn't asthma causing breathlessness then obviously the inhalers are not the appropriate medication.

[Whiters01]

Hi Willow, I'm 44 and had similar...originally I was diagnosed in hospital after angiogram with pericarditis sent home with nurophen..however week later had big chest pains again and a week in hospital.. diagnosed myocarditis...they basically said listen to your body rest and don't do alot.. I had mri 2 months later, heart function good, but inflammation and scaring...the hospital now booked in for telephone call in July. Its such a slow progress or seems no progress sometimes but got to take care, slow down....I struggle with this and still get weeks where I have an episode which I fear going to get bad again.. but they pass and then need complete rest for days after...unfortunately its a very long recovery I'm approaching 5 months still getting chest ache/nausea/heart burn/..hope your improving