Philip

[Phily1982]

I recently suffered heart issues was told by the dr it was a heart attack but my angiogram shown my arteries were clear so they are now saying it’s inflammation of the heart possibly caused by a viral infection I’ve been released from hospital about 4 weeks ago now but still having chest pain and waiting on a CMR scan to see what damage was caused,, the dr mentions it’s probably myocarditis and from what I’ve researched I’m convinced it is that now.. has anyone else suffered from this and how are you now because my anxiety is through the roof

[Tos92]

Hi Phily1982

I’m sorry to hear of your potential diagnosis of myocarditis. There are many other members that I have had it, so know that you’re not alone in this.

I will tag Captain_Birdseye who does have experience of myocarditis.

Did they put you on any medication? I was previously prescribed Colchicine for a suspected diagnosis of pericarditis.

All the best.

Tos

[Milkfairy Heart Star]

Hello,I had myocarditis many years ago.

It has left some scarring on my heart muscle which shows up on cardiac MRIs.

What complicated my diagnosis was that I also have a type of angina without blocked coronary arteries, vasospastic angina which was confirmed later.

I had inflammation of my heart muscle and coronary vasospasms at the sametime, which was totally debilitating.

I wasn't allowed to go home until I had a cardiac MRI. I was in hospital for about 2 weeks.

Usually when you have myocarditis you have raised troponin blood levels, as well as raised inflammatory markers in your blood, raised CRP levels. Have you been told your blood results?

My advice is to rest, rest more and then rest even more.

If you do too much too soon you can have flare ups.

It can take sometime to fully recover.

I remember that I couldn't sleep lying down and had to sleep upright at first.

Cardiomyopathy UK has some information which you may find helpful and a helpline.

cardiomyopathy.org/about-ca...

The BHF also has a helpline too, where you can speak to a cardiac nurse.

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

Hopefully a few other forum members who have had myocarditis more recently will be along to share their experiences with you too.

[Phily1982 in reply to Milkfairy]

hi thanks for the reply.. yes my troponin levels were at 13000 which I was told was extremely high.. they sent me home without having the MRI scan so I’ve no idea to what extent the damage is yet.. I still get chest pain but have no trouble sleeping.. all I wanna do is get back to normal and exercise I can’t stand not knowing what the damage is either.. how did your life change after what happened?

[Milkfairy Heart Star in reply to Phily1982]

I acknowledge how to manage uncertainty is so difficult!My experience is complicated by also having vasospastic angina. My coronary arteries go into transient contrictions causing a lack of blood supply to my heart.

My life has changed as a result of my vasospastic angina rather than myocarditis.

Over time my exercise capacity increased, however the progress was glacial.

Rest is very important. Your heart muscle is inflamed, it needs time to recover. If you try to do too much, too soon, the pay back will be more chest pain and a slower recovery.

There can be a process of two steps forward one step back.

This is I acknowledge is very frustrating!

I find a hot water bottle helps ease my chest pain. Has your Cardiologist or GP suggested any medication to help relieve your pain?

If not, I suggest you discuss this with your doctor.

I spent my resting time drawing and listening to audio books and music.

My children then suggested I got a dog, which helped me get going again.

With time hopefully you will make a full recovery, though nobody can tell you how long your recovery will take with certainty.

[fishonabike in reply to Phily1982]

in addition to what others are saying i'd like to add that it is very important to take the advice on delaying your return to exercise - you might find this article helpful : bmj.com/content/372/bmj.m47... is also guidance for doctors on the treatment of myocarditis which includes information about resuming activty and excercise: escardio.org/Education/ESC-...

when your heart muscle is inflamed the mitochondria, which are central o releasing energy for the muscle fibres to use, do not function properly, so your muscles can not work effectively - pushing yourself before this function is recovered is unhelpful

[Milkfairy Heart Star in reply to fishonabike]

Unfortunately the first link to the BMJ article isn't working.

Could you please repost or give the full title of the article?

Thanks

[fishonabike in reply to Milkfairy]

My apologies - the title is: Returning to physical activity after C.... 19 (you'll have to fill in the blanks!)Author : David Salman

BMJ 2021; 372 doi: doi.org/10.1136/bmj.m4721 (Published 08 January 2021)

Cite this as: BMJ 2021;372:m4721

[Milkfairy Heart Star in reply to fishonabike]

Thank you very much!

[Lezzers]

Hi

My husband had myocarditis many many years ago. I don't think they ever said what caused it & knowing nothing about hearts at that time we never really questioned it, this was pre-internet time! It was a very long time ago, I can't really remember how long it took him to get over it but it was incredibly painful. Not sure if it had any bearing on his future heart health but his nurse was very interested to know he'd had it.

Good luck 🤞

[Phily1982 in reply to Lezzers]

sorry to hear that and thanks for the reply

[Rogo23]

Expert in worrying.You are spending to much time talking to Andy the transporter and me young lady.🤣🤣🤣