Myocarditis - Questions: Hey there - i... - British Heart Fou...

British Heart Foundation

50,161 members31,662 posts

Myocarditis - Questions

Lizzih24 profile image
12 Replies

Hey there - i was recently diagnosed with Myocarditis (4th Nov) and recovering at home. I cant work as my job is active and I obviously cant exercise :(

Did anyone get told to keep their heart rate below a certain number? Im just wondering what i CAN do and trying to be positive.

Also, did you still have some symptoms a few weeks in? like fatigue and breathlessness?

Thanks

Written by
Lizzih24 profile image
Lizzih24
To view profiles and participate in discussions please or .
12 Replies
Oldgimmer66 profile image
Oldgimmer66

Hi

I was told I had Myocarditis in May. I was so fatigued and breathless at the time that I just sat in the sun. My heart rate used to rocket if I did anything, but nobody set a limit. Things improved over the summer, but then I caught Covid for the 3rd time and I was back to square one. So the good news is that it will get better, slowly!

OpenMind1 profile image
OpenMind1

Hi Lizzih really sorry to hear you've joined the Myocarditis club. A fellow Myocarditis haver on here told me their dr had said to try to keep your heart rate under 100. Re time scales.. I think for many symptoms can clear up within a few months but for some it can take longer. I'm nearly a year in but I didn't rest as much as,I should i don't think... so please properly rest, rest, rest and avoid stress if you can then hopefully you'll be backbto full health sooner rather than later. Thinking of you, take care of you mind and body. T x

Lizzih24 profile image
Lizzih24 in reply to OpenMind1

I’ll rest as much as I can 🙏🏻 x

HHH2017 profile image
HHH2017

Hi Lizzih24, sorry to hear you've got this condition. 🙁 Recovery ❤️‍🩹 is largely based on letting your heart muscle REST and as already mentioned by Openmind1, then REST REST & more REST!

Its such early days for you so pls don't think of doing anything much at all yet. You will have days when you fill better, but then do something that sets up back.

Everyone is different though and for some myocarditis can be like flu, which takes weeks to recover from rather than months. I was hospitalised for nearly 3 weeks and recovery two years with long term problems.

The heart rate is a calculation based on age. I was given mine at cardio rehab a year post myopericarditis. Up to that point walking was all I could manage.

Do give the BHF nurses on here a call to discuss your particular situation, they will have lots of advice and ask lots of questions at follow up appointments. But for now please REST, be kind to your heart - if you had pulled a ham string you wouldn't exercise for maybe 6-8wks and this is a much more important muscle.

Maybe think about work & stuff post Christmas and into the New Year. Take care of yourself now and you'll make a really good recovery 😍 best of luck.

HHH2017 profile image
HHH2017 in reply to HHH2017

You can always ring the BHF nurses for advice on 0300 330 3311

Lizzih24 profile image
Lizzih24 in reply to HHH2017

Thanks so much ❤️❤️❤️

Lizzih24 profile image
Lizzih24 in reply to HHH2017

thanks so much. I am going out for walks but nothing more to be honest. I’m just hoping it all heals and goes back to normal. It’s all quite frightening. X

HHH2017 profile image
HHH2017 in reply to Lizzih24

Oh poor you, it is scary, esp those early days when suddenly you are left to get better on your own. Every 'pain' makes you fearful doesn't it!!! I tried telling myself - especially at night' each pain was actually a reminder to stip & rest OR if already resting (which I usually was) it was just the old ticker creaking a bit as it was going back to normal 😉

Long term affects are quite rare and you sound to be doing well so far so try not to worry (easy to say i know). But stress is never good for your heart so need to keep things light & easy going as you can. Accept any offers of help from family, friends etc if available eg meals, shopping etc or have ready meals & take aways for a while - I found evenings hardest and wasn't up to standing & cooking for quite a while. Sadly the pains can continue during recovery and breathlessness, fatigue too but if you know to expect it, its not quite so bad. All the best - keep us posted on how you get in & keep in touch with your GP too.

Lizzih24 profile image
Lizzih24 in reply to HHH2017

Yes, long term is what frightens me. I wish I had someone telling me I’m doing all the right things. I’m going out for walks (school run) or walking dog (standing throwing his ball), but wish I knew if that was ok or too much etc. it’s hard 😩

Lizzih24 profile image
Lizzih24 in reply to HHH2017

Are you fully recovered now? X

gladtidings profile image
gladtidings in reply to Lizzih24

Hi Lizzi, I got a myocarditis re-diagnosis in May, about 10 weeks after being treated for a heart attack, so I'd been resting and "pottering" around at home for that time, doing short walks (5 mins slowly at start/end to warm up/cool down) on flat ground. Reiterating Openmind1 & HHH, resting & reducing stress was the right thing to do to let my heart recover from injury whatever the cause.

Re. your question about symptoms a few weeks in, I didn't have breathlessness as an initial symptom, but yes, continued to get some chest pain.

With the myocarditis diagnosis, I discovered cardiac rehab was only for MI patients in my area, so I can appreciate it does feel scary as there's very little advice out there (& not always follow up appointments either!). I've kept up walking & gradually introduced longer distances and gradients & carrying heavier shopping etc, but have been cautious about strong resistance exercise like swimming. My huge achievement was taking part in a barn dance a few weeks ago which got my heart racing & my mind distracted :-).

So, hope that's reassurance that you'll get there in your own time (hopefully quicker than me). Listen to your body & try to keep your mind active with other things. Good luck x

HHH2017 profile image
HHH2017

Hi Lizzi, hopefully to reassure you I would say, if you were doing too much you would know.

Often on here we use the saying one step forward & 3 back.

If you had a day when you do too much you would probably find you can't do ANYTHING for next 3 days.

If you are managing sch run & a gentle dog walk without paying for it with a day in bed then you are pacing yourself appropriately.

We are all so different so no hard & fast rules but you seem to be listening to your body well and doing just enough to keep making steady progress. Don't rush yourself and keep listening. The BHF nurses may be able to point you in the direction of an exercise plan to build up to.

You may also like...

Myocarditis questions

an acute bout of myocarditis/myopericarditis, and recovered within weeks, how long did you find you...

Myocarditis update and more questions

as a heart attack when I went is is still considered to have been a heart attack or if myocarditis...

Myocarditis

Diagnosed with myocarditis in 2018 & again april 2021,really struggling to do anything, heartrate...

Myocarditis

thursday with worsening symptoms & troponin rise, I was sent home the next day & told to stop...

Myocarditis

pain after almost 5 months, heart rate & rhythm all over the place ,I cant lay down or seem to...