British Heart Foundation
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myocarditis recovery

I'm 5 weeks post diagnosis but still awaiting an mri. I just wondered if anyone else during recovery suffered with short, sharp chest pains. oddly they seem to start on the right of my chest or from down my right arm/armpit, occasionally they come from my bottom jaw . my upper back feels very tight and achey all the time and this radiates into my ribs. it's starting to really irritate me and there seems to be no particular time that it happens.

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I did indeed and they were different to the main pains which were pressure in the centre of the chest.

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yes they are definately not like the main pain I had which landed me in a and e. I think I'm getting impatient and expect to be better by now but clearly my body has some healing to do. starting to get me down. I'm hoping there is no lasting damage :-(

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I hope you don’t either. Manage your expectations on recovery, I am into week 12 on Monday. No one really prepares you for how long it can take. My bloods were all normal but the MRI showed some changes - I’ve no follow up and no explanation. I’m quite disappointed with the cardiologist :(

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how frustrating! there seems to be very little information provided in terms of what to expect and speaking to the gp they know very little about it too. im not due to see the consultant until march and by that time i should have had an mri. i just feel stuck in limbo. im.not even sure when I'm expected to go back to work. I wouldnt know what to say to occupational health as I don't fully understand what the problem is.

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I wouldn’t return to work until the symptoms have gone. Hopefully your MRI will show no damage and you’ll fully recover :)

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thanks for the advice.. it's good to speak to someone who understands as sometimes I feel like I'm just moaning for nothing. :-)

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You’re welcome I have felt the exact same (still do a bit but I can see the end in sight!) good luck with the MRI results x

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I did but mine was due to a dodgy heart valve.

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I was diagnosed with myocarditis 3 months ago. The lack of information about what the future holds is very lacking. Thankfully, the discomfort in my chest has improved. I still get tightness in my chest when I try to walk fast (anything above a very slow walk is now classed as 'fast'...!) or go up stairs or hills. But it does get better little by little and you need to find your own limits and stop and rest when you get any tightness or pressure in your chest. I returned to work this week, doing half days for the next two weeks to see how things go. I'm very lucky my boss has been so supportive.

I had my MRI 7 weeks after diagnosed myocarditis. I saw the cardiologist 10 weeks after and i have to say, my own GP has been much more helpful than the cardio department at the hospital. The cardiologist (not one that I had seen during the 6 days i was in hospital) just told me to go away and forget about it and get on with life..! I understand the need to move on but it wasn't very helpful when I wanted advice about what had happened and how to manage my future.

My GP has arranged for a follow up echocardiogram as it was this that showed the inflammation on the myocardium. He's hoping having this will show how much inflammation is still present and whether there's any damage. He has also been good at reassuring me that I will recover. I'm 57yr old female and before this, i was a fit, healthy person who walked a lot and swam twice a week. Its very frustrating having to slow down so much!

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thanks for the reassurance. it sounds like i need to be patient and not rush recovery and just see how it goes. I will certainly revisit my go if I don't get answers when I go back to hospital as im only 31 and have an 18mth old baby to think about too. sounds like this effects people in different ways and so perhaps why no one can give any good prognosis.

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Hi. I can’t be much help with information as I’m a few weeks behind you in recovery but just wanted to let you know that everything you say sounds very familiar to how i feel. I also get pains in my back between my shoulders and I’m wondering if maybe it’s tension as I’m sure I spend my whole time tense waiting for a pain! I feel like life will never be normal again.

I don’t know what to say when people ask how I am anymore because I think they’re probably fed up of me saying ‘okish!’!

I hope you have some people around to help with your little one and continue to make a good recovery x

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Hi Lizzie and everyone else, I am 4 months down the line and just starting to fill a bit more 'normal' I was hospitalised for 3 weeks where I had MRI, CT scans, ECHO's and Angiogram. My hospital care was outstanding but since being discharged the promises or close monitoring have been disappointing, especially as I have continued to be very ill.

I have experienced the pains you have described, I can say 4 months on these are lessening in occurance and severity now. Fatigue is still a big issue and I really have to pace myself and include rest periods in my day if not for an entire day at times. I am hoping to start a slow phased return to work at the beginning of March. My doctor advised today that I should not rush this and expects it to take until May if not longer before I can return to full time work. My next ECHO and hospital appointment to discuss possible long term effects is in June. I am quite anxious about this but take comfort from the fact that I feel mcuh better than I did a month ago so things MUST be improving with the old ticker!

My advice for those of you behind me in the recovery process is Don't rush it, Plan to have worthwhile rest periods following any activity and finally set yourself small achieveable targets. Good luck everyone. Jennie

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I'm pleased to hear you are making improvements. it certainly does seem to be a long road and we still haven't got to the bottom of what actually has gone off although I know my heart still isn't pumping properly. it's good to know there is light at the end of the tunnel! keep us updated with your recovery x

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I’m pleased things are moving in the right direction for you. It’s baby steps that you don’t notice until you look back after a few weeks and realise the progress you’re making. Although I’m still waiting for my MRI I was feeling much more back to normal but I’ve managed to catch flu so now I’m lay in bed relying on other people. I’m hoping it doesn’t set me back and the myocarditis doesn’t mean it’ll take longer to get better.

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Sorry to hear about your flu, claire I have been terriefied of picking up any other bugs and things incase it causes a set back. Hope you are getting plenty of rest and help to aid your recovery. x

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I found this thread when googling Myocarditis Recovery, - I was beginning to think there was no information out there...

I’m on week 6 from when I was hospitalised and feel really frustrated at how slow the recovery seems to be.

I find I get really tired with even minor exertion (eg walking up stairs, even talking too much).

I have also been getting tight chest pains and shortness of breath, particularly when stressed (which with 2 young boys is frequent).

My GP didn’t really seem to know much about the condition. The cardiologist was very vague about what to expect - I think there’s maybe a big variation in recovery times,

There’s also a viscous circle where the condition makes me anxious and the anxiety worsens the condition.

Apologies for jumping on an old thread, but I guess there may be more people like me finding this in the future.

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it is very frustrating as like to.u say the gp knows every little and the cardiologist you dont see from 1 month to the next. i think an acceptance that things will take time helps keeps your head straight. since being diagnosed with myocarditis i had a mri scan which altered the diagnosis. this is still being investigated and im still off work 6 months on with a cocktail of drugs to go with it. take it easy and keep an open mind about tour recovery. you will get there.

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Thanks Lizzie. That makes sense. Hope you are doing ok.

I’m gradually getting *my* head around it, but I think it’s hard for my immediate family.

I look as ‘normal’ as ever, but I can’t do all the usual stuff so that’s all falling to wife instead and she’s understandably struggling. We have 2yo and 5yo boys who are always a real handful but I hadn’t realised just how physical it is looking after them. I can’t seem to last 5 minutes before feeling exhausted and getting chest pain.

I think we’d just assumed a couple of weeks would get me back to normal, but it’s not panning out like that so far.

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