I used to be a triathlete, training for Ironmans & other extreme triathlons. Then in May 2021 I ended up in hospital with chest pains, breathlessness and severe fatigue. I showed raised levels of troponin. I was discharged after 5 days on a number of anti-inflammatory drugs and colchicine. Showing little improvements and troponin levels still not lowering I was put on steroids. This lasted 10 months. 10 months of rest, no physical activity and all the drugs. (Angiogram, several echos and MRI also done in that time). It took 10 months for my troponin levels to go back to a normal level.
I was told I could start gentle exercise again which is what I did after the 10 months. Less than 3 months later (June 2022) I ended up back in hospital with similar symptoms and blood tests showed raised troponin levels again.
Anyone had anything similar? I feel like a shell of the person I used to be. I’m permanently exhausted, just about make it through a day at work because needs must. I just want my old life back.
Written by
trii_mack
To view profiles and participate in discussions please or .
So sorry to read your story ,in my experience cardiologists believe people just get better within 3-6 months ,while this might be the case for some it's not the reality for a lot of people. I still experience daily pain & profound fatigue even with very very low troponin & the medics just think that if the bloods are normal then I can't be having these symptoms, but I am , I feel they view me as an unreliable witness to my own lived experience of myocarditis. Its a horrible horrible condition, I wish I could offer you more but all I can say is you're not alone xx
Hi there, thank you for your response. I feel very similar. I even paid for a second opinion because once my bloods were normal (at one point) the chest pains were still awful. I was told this would be the case forever but how can I have gone 26 years without that and now that’s just normal?! I’m coming to the understanding there is very little they have to say about it. But knowing some other folk are out there feeling similar is, selfishly, comforting xx
Been there ,done that & have all the t-shirts 😅 multiple trips to A&E ,many conversations with cardiologists & I'm still feeling rubbish . I was fit ,active ,worked full-time & have 3 children to look after ,now I can hardly walk the length of myself without being wiped out. My last acute episode was April 21 & feel like I did then & no you def aren't alone with this ,look after yourself & listen to what your body tells you xx
When reading your post I felt like I was reading my own. I had heart in May 2021 stent fitted, than another one in Oct 2021 due to restenosis. Than in November chest pains again, had CT Scan which showed restenosis again. Saw a specialist in Jan 2022 had a complex angiogram done. Been OK since than just recently started getting chest pains again. Been back to see the cardiologist. They trying to work out what's going on as my ECG, echo and angiograms are all conflicting. I feel you frustration and worry. Please reach out if you need someone to talk too.
So sorry to hear your chest pains are returning. I am frustrated but have an incredible support network at home. It’s just finding people who understand the illness because from the outside people think “your fine” not knowing the chest pain, the exhaustion and brain fog that are constant. It’s not like a broken leg where the illness is obvious and there’s an end date. But thank you for messaging, I really appreciate it.
High Mac you say you did marathons and alike well just like them you have to pace yourself go off to soon and you ain’t going to finish the race It’s all in the mind yep the body is hitting a problem or two but even walking is a start I too get tied just walking to the local shops I used to be a fit class one driver ex army nothing was a problem now I start and finish my day thinking I am here for another day and get on with it but now I listen to my body and do what I can so at night I close my eyes and sleep and if I wake up I go on the mental shock is the killer just get out of that pit of what you was and see what you can do now good luck
I've had recurrent pericarditis since the late 90s - mine developed after a bout with Dengue Fever Stage2.
I wish I could give you some hope you'll get your former life back but it's been my experience (and the experience of ALL other recurrent carditis patients I network with) that your former life is gone. Forever. Still, I hope the following helps - copy-paste and then print it out to go on the fridge or other home bulletin posting spot for quick offline reference.
You CAN get a good quality life going forward IF you learn to follow some highly recommended tips plus avoid triggers that can bring on an acute flare. Using the following tips and guidance, I managed to avoid a serious acute flare for over 15 years. During that time I did have a very few low-grade 'flares', easily managed without medication but the biggie flares were not a part of my life until I caught 'the unnameable virus' in 2019 which led to a series of serious acute flares I am now (dare I say it?) finally seeing off.
The biggest and best tips are:
***Get and wear 24/7/365 a MedicAlert or other brand bracelet or necklace - lifesaver in case you collapse and require emergency response, the info on the jewellery informs the responders you're likely NOT having a heart attack but instead have gone into cardiac tamponade. The first time I collapsed they tried to defib me, luckily my adult son was nearby and told them about the recurrent pericarditis. Er, you do not want to have a roadside pericardiocentisis, it's painful-terrifying-deeply disturbing to onlookers. Don't ask me how I know this, I really hate remembering it. Any road, my bracelet says 'Angina with normal coronaries' and 'Recurrent Pericarditis' and I never take it off. Ever.
***Always sleep with your upper body elevated.
***Avoid hot-humid conditions - no hot tubs/saunas/steam baths/showers/holiday destinations. Ever.
***Stick to a healthy well balanced diet and reduce your salt/sodium intake to see if that helps with swelling and chest pain. I'm on 2-3g salt per day and it really helps me but everyone is different and you must consult your medic to be sure reducing salt intake meets her/his/their approval for your individual situation.
***Never ever think a good day means you can catch up on things you had to let slide during bad days. Overdoing on a good day will only lead to a string of bad days.
***Find a GP or nurse practitioner willing to do chest listens for pericardial friction rub sounds once weekly during flares - the absence of the unique sound (and no it is not something you can listen for yourself) means you are coming out of the acute flare and can VERY SLOWLY begin regaining fitness (although your previous fitness level is not going to ever happen again, I'm sorry) by light free-weights and walking increasing increments per day and stopping if you are in pain or exhausted to the point recovery takes more than a half-hour.
***Finally, learn to be ultra alert to the signals you're in a danger zone (pericardial effusion nearing cardiac tamponade status - a life threatening condition) - increased pain and shortness of breath and/or coughing when lying down or reclining, sudden swelling of digits and limbs, sharply increased left-side chest pain radiating to your shoulder-collarbone-neck-jaw (no it's not a heart attack, it's worse because you need a drain procedure called a pericardiocentisis, not a defib).
You're young and having a life-long recurring carditis condition is hideously unfair on you - but it is doable and it is possible to regain 'normal-ish' life if you don't let the shock of the condition depress you to the point of thinking it's not worth the trouble to properly manage. It IS worth it. Hang in there and keep us posted.
Do read the posts most days, I am taking Johns ashes to Dorset next week to scatter off Brownsea island I am flying, didn’t realise how much paper work would be involved! He wanted to go back to his loved sea, though I bet he is having a good laugh, I thought I could just tuck him under my arm! Paul’s brother-in-Law has a boat and him and John would have long conversations about where John had been in the world. So a week tomorrow we will all say our goodbyes and wish him calm seas and a fair wind. As I said was glad to read you are recovering, hope your family are all doing well.
We're all fine here and there - newest grandson nearing ten months already and his parents planning to bring both boys over once the wee man is over a year (October and hopefully they're all coming to 'stay for the duration' in November )
I doubly feel for you - when grieving such a terrible loss, transporting remains via air isn't easy and it's worse if you're crossing national borders. When I lost my husband I had to wade through shedloads of paperwork to repatriate his ashes from the US back to Britain - ok, I have to admit, I'm giggling about tucking your lad under arm as I thought the same thing, that I could just slip Stephen's urn into my carry-on and bring him home. US Customs had to certify the contents were actual cremains and really it wasn't a pleasant process. Coming into the UK, however was a little easier as the British authorities accepted the US certification I wasn't trying to smuggle anything disguised as my late husband's cremains.
Any road, it sounds as though you have a perfect send off planned, calm seas and a fair wind to you all
That’s such great news about the family coming over. You have something wonderful to look forward to. So you need to keep really well.Having both the boys here was amazing they just swung into action. Paul managed to get a seat on the last flight up on the Friday night so was with his Dad when he passed Craig got here 24 hours later. John rallied on the Thursday so Craig was able to talk to his Dad by FaceTime and said everything he wanted to. John was able to tell him he loved him too. Thank goodness for FaceTime.
I just want to say thank you very much for your very informative reply.
At 27 years old I didn’t think I would be having to give up on my dreams/goals I have. I guess it’s just trying to find a new normal. Being super active has always been who I am so I feel I have lost my identity. It’s a very lonely illness. Nobody really gets it. Don’t get me wrong I have a fantastic support network but unless you are in it you don’t get.
The lack of answers that come with it is frustrating too. I like to know how and why. But I have neither. I didn’t have a virus, it wasn’t Covid and I kept myself healthy always.
But thanks again for your advice, I really appreciate it and will take it on board and hopefully this flare up will come to an end sooner rather than later.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thank-you, I think I'm getting there, and just in time for summer, yippee! May I say, it's good to 'see' you.
Myopericarditis - palpitations
Myopericarditis - rest time/recovery
Advice for Recovering From Myopericarditis (16 months later)?
