Hi everyone. I'm a week out of hospital with a diagnosis of perimyocarditis, although it didn't show up on any tests, that's what my high Trop levels and pain have been put down to. Ive had a few bouts of pain since I've been out and last night was really quite bad.. 7/8 out of 10 pain for a couple of hours. I probably had my most active day since I went into hospital a few weeks ago.
I'm interested to hear what signs people have when they've done too much. I'm a fit 46 year old runner so a 10 minute walk into town and back, a bit of shopping and a coffee with a friend doesn't seem like it should be a problem but maybe I'm underestimating things.
Also.. do others worry that the pain might be something more scary? Do you accept that chest pain is par for the course with myocarditis?
Thanks everyone, i find it so helpful to hear other people's experiences.
T x
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That's so helpful, thank you. So far there doesn't seem to be any scaring for me so a useful reminder that I need to rest and prevent longer term damage as much as I can .. which is tough for me.Re NOCAD That's really interesting. I think thr CMRI looked at the smaller vessels and they seemed fine so I guess they have ruled that out but I will ask.
Thank you for the links too, I'll look at cardiomyopathy.org.
A Cardiac perfusion MRI will be able to check for microvascular dysfunction but not coronary vasospasms which are caused by transient constrictions, vasospasms of the coronary arteries. NOCAD is often overlooked under recognised and un treated cause of ongoing chest pain without blocked coronary arteries.
Thank you for that, I'll definitely ask. It feels really disconcerting that there's no evidence for the diagnosis I've received... Nocad certainly fits with the symptoms ive experienced. Do we know if there's a way they can make a positive diagnosis for NOCAD? Are there any tests that would show it?
My vasospastic angina was confirmed by an angiogram using acetylcholine, a chemical, which induced my coronary vasospasms. I had ECG changes, my coronary arteries constricted and lots of chest pain.
The BHF has this information about vasospastic angina.
My angiogram came back clear but i don't think they used a chemical.. was your ecg abnormal during the test? Mine seem normal..ish.. whenever I have them.Was you myocarditis linked to your NOCAD ..sorry so many questions.
I can have ST elevations depressions, T wave inversions or minimal changes on my ECG.
It's very difficult to catch a coronary vasospasm on an ECG. Though a nurse on the ward went spasm chasing as she put it and by doing consecutive ECGs recorded the shift in my ECG during an episode of chest pain.
I don't think my vasospastic angina is related to my episode of myocarditis.
I would also suggest you don't ignore your chest pain, especially if it's severe, prolonged and happens at rest.
Hiya, do you get any ongoing problems with the scarring? I have myocarditis and pericarditis and my eco cardio gram showed scarring. 10 months on still getting chest pain and breathlessness
Hi, I have permanent scarry and my heart remains slightly enlarged. I had acute myopericarditis and heart attack 5 years ago. I am as good as i believe i will get (cardiologist of same opinion) My heart hates any incline but I can walk 5k at a push on the flat which Im v proud of. Im just 60, I can play & have fun with my grandies and my life has a new normal living with this condition but its good and so much better than my first 2 years💪🏽 Best of luck with your journey.
My husband was diagnosed with myocarditis last April and told to think in months rather than weeks for recovery, which was hard because he was very active although 70 years old. After months of resting and not improving he finally got an MRI which showed he’d had a small heart attack.
So I’d say that yes a week is very short in terms of recovery, but also if you are getting extreme chest pain don’t ignore it and get back to A&E.
Hi, I have myocarditis and pericarditis. It’s been 10 months and I still struggle with walking, especially uphill. I used to go to the gym but haven’t been able to.
I find some days are better than others. You need to rest as the others have said. Ignore what you could do before and focus on what you can do now. Don’t push it and don’t rush it.
Hello,I to have myocarditis ,diagnosised June 2022. I cannot stress enough the importance of REST REST It's taken me until now to learn to live with it. I am still active but not at the same level before. Its a slow process,think hare and tortoise! I am now progressing well,cardic rehab team have been Great 👍 and supportive throughout ,. Take care
I’m the same, since C in June 22, diagnosed pericarditis in November 22. Most test were negative except the echo which picked up a MR and enlarged Atrium. I’ve been told rest don’t push through. Still off work and unable to walk more than about 10mins in the flat when previously I was running 5K three times a week.
hi, so glad you are feeling up to going out. Everyone is different in their recovery but Id say that was a poss bit too much yesterday judhing by your pain today.
The pain after Myo or peri or both is really scary and each time your mind easily races to 'was the diagnosis wrong?' Or 'could it be heart attack?'
If you are in much more pain today than yesterday then your heart is saying slow down a little. Poss think how long you were out? How many hours did you work yourheart muscle in comparison to previous days?
Its frustrating Im sure but long term you want the old ticker to be fit & healthy so do look after it well now. As a runner you are poss you to planning a routine to get back after a muscle injury so could do same with yourheart & build up a bit slower? Just an idea. But its fab you felt you were able to go out & no doubt it did you good in many other respects. One week in, you are doing great 😊
Thank you so much for that, hugely helpful. I guess my challenge is that most days I feel really well and am in a bit of denial about things, but really don't want to cause long term Problems so trying to heed all the fab advice. Take care T
see that others have already stressed the importance of rest during your recovery and I would like to add my own recommendation that your heart needs time and rest to allow it to recover
Myocarditis is inflammation of the heart muscle - this means more than a bit of swelling and redness - the inflammation actually affect the way your heart muscle can used fuel to do its work - so it does not work properly and this is what causes the pain
so you need to think very carefully about how much you are doing and, for the time being at least, do very little - if you get symptoms like pain or breathing problems you are expecting too much of your heart
if you do a search in the group for Myocarditis you will find other posts on the subject - i recently gave some references for the European Society of Cardiology guidelines on Myo- and Peri-carditis (and other conditions) - you might want to look that up
Thank you for taking the time to reply... I'm certainly still in a bit of denial so hearing this is really helpful. I'll look at your past posts. Take care T
I got diagnosed in November 22, result of Covid, and was told it would be at least 3-6 months before I felt better and well enough to exercise. Its all about rest , rest and more rest initially, 3 months on if I over do things I still get pains though not as bad as initially especially if I have over done things - You need to listen to your body. Someone on the Lupus group said their cardiologist had told them during recovery when walking or doing anything not to let their hearts go above 100bpm. so not straining it , really good advice . it is just like a normal injured muscle and needs to be rested, though unfortunately you can't do as you would with a normal strain and not use it obviously , so its all about put as little strain on it as possible - I do so little compared to before and do wonder if I'll get back to as I was, or if this is the new norm. Get my MRI results on Monday🤞.
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