Myocarditis

[Clairey37]

Hi. I’m 36 and 3 weeks ago I was diagnosed with myocarditis. I’m on beta blockers and ibuprofen. I keep getting aches still in my chest area, nothing really severe like when I was diagnosed but they are uncomfortable. Is this common? I’m so paranoid and anxious that something terrible is going to happen to me!

[laura_dropstitch Heart Star]

I don't know anything about myocarditis (I have heart failure) but just wanted to say hi and welcome. It's such a shock to find out your heart is not working as well as it should and I think all of us wonky-hearted people have been terrified at some point. Hopefully you'll get some answers and be able to relax a bit more soon. Guessing the BHF Heart Helpline is not open over Christmas (?) but generally you can call them in office hours if you want to chat to someone or have any specific questions. The number is 0300 330 3311.

Hopefully someone a bit more in the know about myocarditis will see your post soon and be able to offer more info. Good luck x

[laura_dropstitch Heart Star]

You might find some useful information in this thread - healthunlocked.com/bhf/post...

[Hidden]

Hi, I’m into week 10 of viral myocarditis. Depending on the cause (eg which virus) the recovery can be 2 weeks to an average of 3 months. You need complete rest; that’s what I’ve learnt. Are your bloods normal? What test results have you had? All the best and take it as slow as it dictates xx

[Clairey37 in reply to Hidden]

I’m trying really hard to rest. My family are being great but 3 small children do make it a bit of a challenge!

I had an angiogram, ECG and an echo whilst I was in hospital. I’m waiting for an MRU to check there was no lasting damage. I don’t really know anything about my bloods except that my tripolin levels were really high at the time. They did say it was caused by a virus though.

I hope you’re starting to feel better.

It is nice to hear from people who also have this.

[Hidden in reply to Clairey37]

That does sound very difficilt! It is just a waiting game then until then. Keep in mind there’s a whole range of possible damage from nothing to severe and everything in between. The good news is you’ve already had extensive testing and have been allowed home. No doubt a letter from the hospital will go to your GP - perhaps it will be helpful?

[lizzie1986]

I'm 4 weeks on with myocarditis and I'm still getting aches and pains in my chest. If you are worried go to a go for some reassurance, however, I went through this and the doctors suggested it may be because the heart is a muscle and has been strained so it needs some time to recovery with rest like any other muscle. I am terrible for taking my own advice but rest as much as you can and no heavy lifting etc. hope u feel better soon x

[Clairey37 in reply to lizzie1986]

Thanks for your reply. I’m pretty sure it’s just from the muscle damage and also I think I’ve been so tense and anxious I’ve been holding myself really stiffly!

How is your recovery going? Are you off work still?

[lizzie1986]

I'm feeling better than I was but the trouble is that as soon as I start feeling better I start doing more and then I feel very tired and my chest aches again. I also feel like I get palpitations. I'm still off work and don't plan on going back for a couple of months as I'm completely exhausted and can't get through a day without a nap. I think anxiety does play a big part in the recovery too... the mental scars are the last to heal! I'm only 31 so totally understand what you are going through. don't rush back to work and tale each day as it comes. I'm learning to listen to my body.. if I feel tired or just not right then I rest and if I'm planning a big day e.g. tomorrow then I will plan rest before and after.

[Hidden in reply to lizzie1986]

This is EXACTLY the experience I’ve had. I’ve had my MRI and my right ventricle has an area not contracting properly and my right atrium is dialated. Both are temporary - no permanent heart failure. I hope that’s reassuring to everyone

[Clairey37 in reply to lizzie1986]

Hi,

I just wondered how you were doing now a few weeks on? I’m so much better than I was but do still get really tired which then seems to make me have chest pain. I’m not sure how much of it is the normal ‘January slump’ and how much of it actually is myocarditis.

Hope you’re getting back to normal. X

[lizzie1986 in reply to Clairey37]

hi... I feel like my meds are starting to take affect now and with some adjustments to them I feel a lot better. I know I can push myself too much as I get chest and back pains and I have started some rehab and find with even light exercise that my heart starts to struggle after 100bpm. I'm glad to hear you are feeling better. do you know if you have any long term issues or is this something that will pass?

[Clairey37]

Thanks. I hope you all have a wonderful Christmas x

[ChrisParry]

Hi. I’m also 36 and have just been diagnosed with a moderate form of Myocarditis. It’s a struggle mentally and everyday activities are becoming difficult.

How are you getting on?

[Clairey37]

Hi

Sorry to hear about your diagnosis, it’s pretty scary isn’t it? How long ago were you diagnosed?

I’ve had some great days over Christmas and got up and out and had some walks but the last few days have not been so great again. I’m struggling mentally with it mostly i think. I find it frustrating that I can’t do things and then I panic that I’ll mever be able to do the things I used to do again. I don’t know about you but I think I could sleep for a week in one go! I think I’m on the up now though!

[Tamas333]

Hi, I was diagnosed with myopericarditis in May last year, I also did have the pains, still having the health anxiety, thoughts about something awful is going to happen to me, all I can say that this is the part of the healing process, I have been there, what you can trust is your own body, love your body, imagine it as it has already been healed, be grateful for your breathing, have fun and if you want to avoid much more anxiety do avoid drinking coffee or anything with caffeine inside. They make it worse. You can do without caffeine, I know I tried it it can be done. I just downloaded an android app called Curable, it is really helpful in treating chronic pain, the pain what you feel is not coming from your heart, it is all caused in your brain by your overactive nerve system, stop your negative thoughts by talking to them, tell them loudly who is in charge, talk to your pain as well, tell it who is in charge and you will see it really can help. You are the only one who can heal yourself, the drugs and everything else can help to make the symptoms to be more bearable, but all what is happening are in your own brain, trust me the body and the brain can give you symptoms that nobody can explain, mostly because there is no reason for them to be present. During the first 6-7 months after been charged from the hospital I went to the A&E in Leeds at least 12 times, and nothing was wrong with me. Nothing !! I did have a social worker as well because of this, mostly what you need to deal with is a strong and deep mental condition which only exists inside you. You have to love life to make life to be easier and to make it happen. Just be grateful every morning that you can wake up, this could be the first step, talk to your pain and your mind, the anxiety is natural, your worries are natural, you are going to be okay I am sure about it. Do what you like, do not miss the moment of life. That is all I can say. Tamas from Leeds.

Also I did have all the tests by the doctors imaginable. I did have blood test, 24 hours monitoring, stress test, several blood pressure and ECG tests, echo cardiogram (it was not a pleasant experience, but it is over) also I did have MRI and I did excellent on these tests. All we can do is stay strong and enjoy life. Make our dreams come true. I am sitting in a cafe now and writing stand up comedy jokes. I wish you a good health and if you can try a moderate gym program, but only step by step. Heart is a strong muscle and loves to be used by exercising. You will feel much better after the exercise. Your body and brain will be full of happy hormones and it feels great.

[BillyK85 in reply to Tamas333]

I really liked this post, I’ve had raised Troponins after Covid and now Long Covid, and concerned I still have heart inflammation with regular tachycardia. I’m going to get a Cardiac MRI but thank you for your message I received it loud and clear. How is the comedy writing going?