I'm a fit 46 year old, runner, non smoker, healthy eater who does enjoy a glass of wine. I had chest pain when i was going to bed about 4 weeks ago which i put down to indigestion.. then about 2 weeks later the same thing happened but much more severe so called 111 who called 999 who took me to A and E. Slightly abnormal ecg but not serious when they found my troponin levels were raised. 68 (normal is under 13) so treated for a heart attack. A week in hospital having chest xray, echo, ct and angiogram showed a healthy heart... was discharged awaiting a Cmri expected to confirm myocarditis. Home for one night but getting ongoing pain so nack to A and E.. troponin levels had increased to 350.. so in again.. cmri done showing nothing. Treated for myocarditis.. anti inflammatories and 3 to 6 months rest. home now and feeling pretty vulnerable as still getting pain and worry that something more dramatic might happen. Anyone had a similar experience? How do you judge how active you can be safely? Would love to hear others experiences. Warmest wishes
Myocarditis or pericarditis anyone? - British Heart Fou...
Myocarditis or pericarditis anyone?
It's a difficult situation isn't it.
I went in by ambulance last September as had pain in my chest. When there I had a chest x-ray (showed nothing) and then was told that my blood tests showed infection, but they didn't know where it was. Sent home with antibiotics.
Went to see my doctor a week later and she did another blood test, when results came back was prescribed different antibiotics.
The following week I went to go to bed and as I lay down, suddenly was gasping for breath and it was terrifying. Dialled 999 and lady on the phone kept talking to me until the ambulance came. Once in the ambulance they gave me oxygen and after about 15 minutes my breathing became normal. Had never had anything like it before. Another x-ray and diagnosed with a lung infection, sent home with different tablets again.
Still felt dreadful, so I went to see my GP a few days later and she was furious that the hospital had sent me home with a CPR of 150. She was straight on the phone and I was admitted to hospital, given another x-ray and told I had pneumonia. They sent me home with two lots of antibiotics, it was a Wednesday and they said if I didn't feel better by Saturday to go back. I didn't feel well so went back and was admitted to hospital where it was also discovered that I now had C (that word which can't be named) which was making my heart race. Went to the C ward for 4 days and then sent home, where gradually after several weeks of more antibiotics I very lowly picked up again. Lost a stone in weight because I felt so dreadful.
So my message to you is be prepared for anything and don't be afraid to dial 999 again if you feel you need help. This is your heart we're talking about now, that thing in your chest that keeps you alive. Don't push yourself to do anything strenuous and let your body tell you when you can do more. I tried to go shopping about a month after leaving hospital, but just didn't have the energy.
Take care.
Jean
Omg Jean what a horrible thing to go through and thank you. I think I'm so worried about making a fuss but also worried about what could be going on, so a reminder that it's ok to call 999 is helpful. X Apart from the pain when it comes, I feel fit and fine so it's a battle not to want to just get on with life... but don't want to make things worse.. i guess this is as much a psychological battle as a physical one. Really hope you're on the mend. Thank you again. X
Hi,
I was diagnosed with myocarditis last July - you can read my posts with mm y story by clicking on my profile if you're interested.
I was advised to keep my heart rate under 100bpm and avoid exercise for up to 6 months. I still have symptoms now so only doing gentle walks still.
Only consistent advice is to rest, rest and rest some more! The pain can be managed with normal painkillers.
Some folk get over this quickly, some take a bit longer. It's not an easy or straightforward condition, but it is self resolving in the majority of cases.
Huge thanks Captain Birdseye, I've had a look at your posts and it looks like our experiences are quite similar.. i feel really disconcerted that there's no evidence of myocarditis or pericarditis but in the absence of anything else that's what we're going with. I'm a really active person, was actually training for a marathon. I understand that rest is important but to what extent and when one can start pushing things unclear. I also worry about covering the pain with painkillers as it feels like an indication that things aren't ok?? This feels like it's going to be a mental battle too 😪 all the very best in your recovery x
I've read that strenuous exercise can cause raised troponin levels as well, it has been detected in healthy athletes so this might be worth exploring...ahajournals.org/doi/10.1161....
What I'd say (in case it is myocarditis) is that I was encouraged to keep walking, but to monitor my symptoms as they sometimes don't come on until later. Maybe ask if you can speak to a cardiac rehab team, as they will be able to give more structured advice.
The mental side of things can be as challenging as the physical... go easy on yourself, and ask for support or any questions when you need it!
Thank you again. That's a really interesting article....i wonder whether the running made the systems more noticeable butnI don't think my symptoms quite match the study.. my troponin levels were going up and down even weeks after i stopped exercising. I am desperate to find out why this has happened though so I'm interested in all possibles.. I'll ask the Dr .. if i get to see one... about whether this might be the cause for me. I really want to get out walking again, i thought I'd guve myself a few days of doing very little then start cranking it up a bit. Have you any idea whether your pain affects your Troponin levels? My fear is I cause my heart more damage that isn't reversible. Thanks again. X
Hi openmind1
Really sorry to read what you're going through. My situation isn't exactly the same, but I understand the mental battle and fear of just doing the things that are normal for you.
I'm a relatively fit 53 year old who works offshore. My job is pretty physical but never anything that was physically beyond me. In October I caught a chest infection which returned a heart murmur. After antibiotics cleared up the infection I felt totally back to normal. 2 weeks after the infection I went for an ecg at my GP. It's was slightly abnormal so doctor called an ambulance and told me I was having a heart attack. I wasn't. 4 days in hospital and various tests I was told I had severe aortic stenosis and would need a valve replaced at some point.
I returned to work but reading up on my condition it became obvious that things could go wrong at any minute which I hasn't really been explained in hospital. Every time I was walking up a flight of stairs the thought of me being found at the bottom of them flashed through my mind. I'm a big gym goer but had been told that I wasn't able to do that at all. I still have no real answer to when I can get back to that. Obviously mental health really isn't so important as they claim as its always just brushed to the side when physical health is impaired.
Sorry for rambling. My point is that I was in living in fear of doing anything and was basically just waiting for the massive heart attack that would see me off. Eventually I got my MRI and they found a bicuspid valve, took me into hospital the next day. I was in for ja month waiting for a slot but I'm now home with my new heart valve.
All I get told is that I must rest, which I understand, but what is rest for one person is not the same for another. I'm now listening to my body as much as the doctors and nurses and living as normal as I can but never overpushijg myself. It's really helped my mental state.
I really hope they find out what is causing your problems so you can know it's getting treated and you can return to living your life without the worry that something could go wrong all the time.
Oh Offshore guy that's such scary stuff thank younfor sharing that, it really does resonate... I think the shock of something like this happening when your young fit and healthy is massive, mortality hits you like a train. My running and hiking was what kept my mind well, for sure, I'm holding onto the fact that thisnis a short term rest period... but you're right.. I don't really understand to what extent I should be resting... or when I'll know it's safe to push myself harder it was a life long dream to run the London Marathon but not sure I'll ever feel confident to run long distances again. I really hope you keep going from stength to strength. Thanks again for sharing. X
Hi, I was diagnosed with myocarditis and pericarditis in May last year. I’ve had ongoing chest pain and breathlessness since. I’m on beta blockers which do work to some extent. But I can’t stress enough that rest is the best medicine. When you feel better you then think you can go and do what you did before, but just increase activity gradually. Take it easy!
Hi, I’ve suffered with peri now for almost 17yrs caused by as yet an unclarified autoimmune disease as it was not caused by illness, surgery or heart attack. The gold standard for diagnosing peri is an MRI, though it can be seen on echo and CT. I’d suggest waiting until further tests have been carried out before exercising and if you are concerned about your pain go to A&E. With peri rest is key, keeping the heart rate under 100bpm and anti inflammatory drugs such as colchicine, ibuprofen, naproxen etc. Hope you get better soon.
Thank you, and sorry you've experienced pericarditis for sooo long. I had a cmri and no evidence on any of tgectests, i even had an angiogram 
i didn't know anout the 100 bmi guidance, I'll check my drs happy with that and invest in a fit bit. I'm on anti inflammatories so fingers crossed. thanks again and hope you go from strength to strength x
hiya Openmind1 I have just replied to another post about pericarditis which you had also commented on. Hopefully you can see that reply so I won't repeat myself.
I totally get how vulnerable you feel, every twinge in the early days (and there can be lots) is so scary.
I got through the early days by telling myself, my heart is a muscle and just like any muscle that has ben pulled/twisted etc it needs complete rest and time to recover.
Depending on how severely you have had it your rest & recovery needs to reflect this. For example I came out of hospital in a wheelchair and couldn't/didn't walk unaided for 6 weeks. I couldn't go upstairs for months. I set myself small 2 weekly targets once I started to improve.
My heart remained enlarged for months rest, helped it recover. Though it is permanently slightly enarged and damaged but this is very unusual apparently and I was very unlucky to have had it so acutely.
Please rest, rest & rest some more : )
I have posted lots on here & recently had my 5yr anniversary so do search on older posts. Good luck in your journey to a full recovery.
Thank you so, so, so much for that.... I'm 2 days out of hospital and I'm already pushing what I know is probably sensible.. I had literally just had the same conversation in my head about my heart being a muscle and it just needing some rest. I'm so sorry to hear how badly you've been effected and really hope you keep going from strength to strength. It's brilliant that you're still supporting newbies like me. Thank you x
Hello there. I think my trophin levels was 2500> as it said on my discharge letter. Was in for severe heary failure and suspected heart attack.
Anyways my sister had myocarditis but it was as soon after her 2nd booster. It left her with vision problems, migraines then not long after started getting chest pains. Luckily its treatable but she has also experienced a 2nd episode of this now 6 months later., 😔
The human race is very sick at the minute. Never known anything like it to so many young people.
you might want to take a look at the 2020 ESC Guidelines on: Sports Cardiology and Exercise in Patients with Cardiovascular Disease academic.oup.com/eurheartj/...
scroll down to sections 5.5.5 Myocarditis academic.oup.com/view-large... and 5.5.6 Pericarditis academic.oup.com/view-large...
Oh that looks really, really interesting.. just going to print out those sections... think i might need to get the highlighter out. Thank you so much.
Cardiac Rehab is definitely the way to go if you qualify and can get it.
I've never been particularly fit and worry about how much exercise I should do since my HA. Being in a class with an experienced instructor is a great help. To exercise the heart we often exceed the ballpark figure for Heart Rate I was given in my initial assessment, but the instructor can see if I'm coping OK. Apparently, the important thing for my condition is not how high it goes but how quickly it comes back down.
Your condition might be different, but exercising under qualified observation helps to calm the nerves at any level
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