myocarditis

[Rhva]

been in hospital diagnosed with viral mycorditis ECG normal X-ray normal echo cardiograph normal stress test normal troponin high discharge me but I still feel terrible I was ok for two. Weeks started back at work feel like I have been hit by a bus no energy heart thumping anyone else feel like this

[Milkfairy Heart Star]

Hello Rhva,

Welcome to the forum.

I had mild myocarditis many years ago which was picked up by a cardiac MRI and my CPR blood test, which is used to check for inflammation was raised.

Did you talk to your Cardiologist about when it would be best for you to return to work?

You may need to take some more time off and ask for a phased return to work.

Myocarditis can be exhausting along with the feeling you have been kicked in the chest by a horse.

Your heart can feel bruised and sore.

My advice is to rest, rest and rest some more!

Cardiomyopathy UK has this information about myocarditis which you may find helpful.

cardiomyopathy.org/about-ca...

There are some other forum members who have more experience of living with myocarditis and hopefully they will be along to share their experiences with you.

[CrazyLif]

Dear Rhva. Viral Myocarditis can last anything from weeks to years - even after all your stats go back to normal. I have now had it for one and a half years. All that really makes any difference is rest, rest and more rest. Learn your limits as you have no reserve, and try to stop before your reserve runs out - at once your reserve runs out it can be take a while to recuperate.Sounds like you need to consider phased return at work, I had two lots of phased return - several months each. Also work has an obligation to adjust to suit your capabilities when you do get back in action.

You need to learn to put yourself first, listen to your body when it gets to much and be nice to yourself. Ditch the guilt, you are trying your best. Take care, I hope you feel better soon.

[CrazyLif]

Also do not let the medics be dismissive just because your stats are ok. Myocarditis is a rare condition that has been until recently under studied. They do not have to study it at med school, so very few cardiologist actually have much knowledge. I think the stats said that in the UK there is only one cardiologist per 4 trusts with even the slightest knowledge. This means they can be very dismissive of the condition, as they truly do not know how to treat it, and there is no official treatment plan to follow.

This can be very frustrating as a patient. It is important to not let them dismiss you, and stick to your guns until you find someone or somewhere that does not just give up on you.

[12dr in reply to CrazyLif]

Hi I had covid myocarditis 9 months ago they kept telling me I didn’t have it even cardiologists my heart rate was 190 bpm and ecg all over the place troponin alway normal they kept telling me because my troponin normal I didn’t have it .They were wrong I paid for a private mri which showed myocarditis and odema on my heart .I’m now having a flare up and again doctors are clueless!!!

[Worlebury]

Hello Rhva,I to have been recently been diagnosed with myocarditis, and echo everything that the previous 3 people have written. Through asking on a similar forum, the rest required is like going into "couch " mode. Do nothing that will induce stress or you will not be able to reduce the inflammation. Its a tough diagnosis, but with support,correct meds,and loads of patience, it can improve.

[Captain_Birdseye]

Hi Rhva,

I joined this forum a few weeks ago and have just been lurking... but wanted to reply to you. I've also recently been diagnosed with myocarditis - similar to you my troponin was elevated, ECG was normal as was echo - however I do have follow up CT and MRI to conform diagnosis.

I've been off work for 4 weeks now and I have ok days and bad days. I actually went back to A&E over the weekend to get checked out again, and there was no detectable troponin in my bloods - which was very reassuring! I've been advised that when I do go back to work (likely in the next week or so) that I'll probably need a phased return. I was also advised not to drive for a month.

It's been a hell of a month, but Doctors (Cardiologist, GP and A&E) have all advised it can take 3-6 months to recover - although from some of the posts here I worry it may be longer.

I've another appointment with my GP tomorrow, and also a private cardiologist - just so I have time to speak to someone that is knowledgeable in the condition as I'm concerned some of my symptoms don't quite add up (some looking like pericarditis, but also getting a lot of pins and needles) and the GP has admitted they aren't familiar with this.

The advice that seems to be consistent throughout is rest - easier said than done when you're worried about your heart! My google search history makes me look like a hypochondriac! Hope you get the time to heal, and please keep us up to date - it's good to have other people who know what you're going through

[Rhva in reply to Captain_Birdseye]

I get pins and needles and numbness in my arm and legs too

[Captain_Birdseye in reply to Rhva]

You are the first person I've read that's happened to as well (I've maybe not read everything yet) - so thank you for sharing this

[BL567 in reply to Rhva]

I’ve had myocarditis twice now (extremely rare and potentially genetic). On my first bout I also got pins and needles in my feet. I thought it was from bisoprolol. Most people recovery fully. After my first bout I returned to a completely normal life and had an amazing time. Likely be you in the not too distance future!

[Eddie1969 in reply to Rhva]

Hi just come across this bit about the pins and needles in you legs. I have had myocarditis twice and been diagnosed with necrotizing myostitis now as well. I get pins and needles and put it down to myostitis not myocarditis. This has hot me thinking now.

Hope you are well. Thanks