Myocarditis - recovery

[AM53]

Hi I posted last week, as newly diagnosed on Christmas Eve 2020. I had high troponin levels, increased high heart rate on activities and chest pain. Cardiac MRI showed normal EF, mild impairment on left ventricle, oedema, and mild late gadolinium enhancement. No medications. Signed off for a month abandon told no strenuous activities for 4-6 weeks. Been checked by GP, and heart rate normal, BP a little raised and chest clear. Not sure what to expect and if this chest pain is something that will linger longer. Trying to do short walks and more around the house slowly, but feel unsure what I should be doing? Any help from those further on please.

[Sevenstar]

Hi , I've had myocarditis, twice now , the pain is specific in my case and I know when I've overdone things ! Just listen to your body with plenty of rest , gentle walks and gradually build up , it took me about 5 months to be able to do more strenuous stuff but it didn't stop me walking most days ! No heavy lifting and no stress if possible! Every day should be better

[AM53 in reply to Sevenstar]

Thank you Sevenstar1. That’s so helpful. I am finding at times the pain gets worse after having a shower, or doing small activities. Am trying small walks on a treadmill on a slow speed, as live at the top of a hill. But can also have days when the pain is sharp, but have not done anything. Hope you don’t get this again. Can’t imagine how awful that was, to get this again.

[Sevenstar in reply to AM53]

You are welcome, yes I remember the sharp pains but they become less and less and then suddenly remind you when you do too much ! I got it in 2019 and then again in 2020 but milder after a virus ! I had a scan at the beginning of this year and my Cardiologist said there was no sign of it now ! It just takes time to resolve , get plenty of rest and you will get there

[AM53 in reply to Sevenstar]

Thank you. That’s great to know and what to expect.

[Lovetheoutdoors]

I was diagnosed with myocarditis January 2020. My pain was quite severe. I remember finding it so difficult to breathe or swallow due to the inflammation. On meds for 3 months. But gradually the pain subsided and although it took time to get back to doing more than a short walk round the garden I would say I'm back to normal routines now. Take it steady and don't push yourself. I'm 72.

[AM53 in reply to Lovetheoutdoors]

Thank you Lovetheoutdoors. So glad you are back to normal routines now. I’m a nurse and go back to work in 3 weeks, which I hope will go ok. My breathing is ok most it, only slightly out of breath doing more active things. The inflammation is mild thankfully, so just the sharp pains and constant dull pain in my chest at the moment.

[HHH2017]

Hi AM53, so sorry to hear what you've been going through.

Sounds like you are doung the right things, taking it steady & plenty of rest!

It really is important to listen to your body and slow right down.

If you think you may have been discharged early due to Covid - i would advise you rest & don't do anything other than move carefully around yourhome. When that doesnt hurt,exhaust you ormake you breathless try a bit of time outside perhaps in the garden if you have one, again when your body stops protesting to this build up to a short stroll & so on. If you think you came home at the right time you will be further along this path.

I had acute myocarditis & pericarditis together 3years ago and my recovery hasbeen years rather than weeks or months. But I was in hospital for a few weeks and have some permanent damage to my heart.

If you search on here for Myocarditis you will seemany older posts which Im sure you'll find useful.

PLEASE don't rush your recovery or it will be 'too big a step forward & 1/2dozen back!'

Your heart has had a very nasty experience it really needs time to recover. As do you, no doubt, to get your head round the experience. Be kind to yourself, rest is a great healer.

Wishing you well.

[AM53 in reply to HHH2017]

Thank you HHH2017. Unsure on my discharge as most people on the ward were being sent home on Christmas Eve, but some had immediate follow ups as outpatients, whereas I’m booked for a cardiac MRI in April, and cardiologist follow up a month later. I have been reading through older posts that are really helpful. I know we all have our own experiences and journeys, but the most confusing is feeling that something is wrong, but Doctor’s saying you are fine,. Sorry to hear that you have permanent damage. Wishing you well too.

[HHH2017 in reply to AM53]

Thank you. Good to know your MRI is booked in. I found the time from leaving hosp to being seen again for the first time so very scarey. Everything is unknown and a worry.

Obviously you aren't fine just yet, but you will get there. Your heart like any muscle having had an 'incident' is battered and bruised and needs rest, hence giving you the sharp pains & aches as reminders to rest. Hopefully the MRI will indicate that things are returning to normal, it can take time for swelling to reduce so a scan in April sounds sensible. I would suggest making a few notes of when you are most uncomfortable, what were you doing, see how many times a day it happens then hopefully you will see this gradually reduce or notice that you are doing more before you get any discomfort. This info might then be helpful to show Cardiologist too. Good luck with your RESTFUL recovery 😉 Did I mention REST! ☺️

[Whiters01]

Sorry to jump on to this chat.. im wondering about recovery...I am in week 3 after 2 hospital stays following heart / chest pains, troponin upto 5700 and then reduced. On colchicine. Diagnosed myocarditis..awaiting mri...Been at home for 1 week and tried first very slow walk yesterday but then in pm evening felt chest ache mild.. is that normal..? How long is recovery ? Any type of exercise which can do which won't agrivate (I appreciate everyone different)..feeling bit low as I'm a 44 male and usually very fit/active/sports/dog walker..any thoughts welcome or your general recovery insights..

[croggler in reply to Whiters01]

I'm 6 weeks in , not back at work .. Waiting for MRI results , but pre diagnosed myocarditis..Pretty breathless most days & chest pain if I overdo it..No info for recovery on leaving hospital..Sorry I can't be more help..Pretty disappointed with the lack of help / info if I'm honest

[Whiters01]

Hi, yes I agree aftercare is absolutely none existent..I'm really surprised, I've had 3or 4 smaller episodes of chest pains aches/nausea during the night which were quite scary ...they have all followed me doing some really low level movements..they have improved but think that's because I'm not really doing a lot..I have actually started working again from home on laptop/mobile which have found ok taking my time to rest when can.. I did speak to a heart nurse from the BHF which was useful. ...I'm still waiting for MRI scan..I guess just a long recovery time...Do you find diet helps ? I'm trying to reduce sugar/salt intake. ..also I did find a youtube video on another website. Myocarditis UK. Which found useful for deeper understanding of condition. Thanks Matthew