Myopericarditis

[MazzieP]

Hi all, I was diagnosed with myocarditis and pericarditis in May this year and am now in my 6th month of recovery. I have felt very alone with my diagnosis as no one I know ( including me) had ever heard of the condition. I was admitted into hospital via A&E and spent 11 days being treated for suspected heart attacks x 2 only to be diagnosed on discharge with myopericarditis ( inflammation of both heart and sac). I have tried to remain positive but can’t seem to shake it off. I’ve stumbled across this forum and for the first time having read some posts feel I am not the only one with this debilitating condition which in itself Is comforting to know. ❤️‍🩹

[Geejay1709]

Hi MazzieP, your experience sounds just like mine! I have never felt so anxious, vulnerable and lonely in my life😔 I'm just over 2 weeks post diagnosis, and feel dreadful most days... You've done the right thing reaching out to this community, the people on here are so generous with their advice and sharing their experiences.

My advice take it easy, rest and let people look after you - none of the things I'm good at😂

[MazzieP in reply to Geejay1709]

Hi Geejay1709, thank you for your reassuring words. I’ve always been a get up and go person so I too struggle with resting up and letting other people look after me!!

[Retirement65 in reply to Geejay1709]

Hello geejay so sorry your feeling poorly hope you start to feel better soon - could you tell me how they diagnosed this condition and what were your symptoms I’m trying to figure out what is wrong with me had various tests just waiting for a 24hr ecg result Im full of aches and pains seeing physio for neck and collar bone pain but get chest pain which I was told is MSK related hope you didn’t mind me asking you all this take care 😊 x

[Geejay1709 in reply to Retirement65]

Hi thereOf course happy too...

I had a minor op and went home, a few hours later experienced a heaviness in my chest, and pain up to my neck briefly,I thought it might be a thrombosis so called the (private) hospital where I'd had the surgery, they advised call 999 as no emergency provision, I did, they said get yourself to hospital- no ambulances!

After ECG and blood tests which showed very raised troponin, was told I'd had a heart attack 😳

Admitted to hospital had further ECG, echo, lots more blood tests to monitor troponin levels which remained raised, and an angiogram...

No blocked arteries so ruled out heart attack, and diagnosed myocarditis. Just had a cardio MRI with contrast dye but haven't got the results yet.

I've got a constant feeling of pressure in my chest, light headedness, and feel breathless after even the most minor activity.

Hope you get a diagnosis and appropriate treatment soon

🙂

[MazzieP in reply to Geejay1709]

From admission to discharge it sounds a similar journey to me. It took a few weeks after discharge for the anti inflammatory drugs to take effect… it does get better. It feels very scary, I felt very anxious after discharge as I didn’t know how to manage my condition. I’m starting to understand the relapse patterns and am not so quick to fear the worse. Hopefully once the anti inflammatory drugs have been in your system for a few more weeks the symptoms should ease. I wish you a speedy recovery ❤️‍🩹

[Retirement65 in reply to Geejay1709]

Thank you so much geejay for replying to my message I feel a nuisance after what you have been through hope your feeling better soon - think I’m going through that elimination process is it this is it that? Silly really I suppose there is an element of anxiety as well if somebody had told me twelve months ago I would still be feeling grotty it all started with a bad cough and rib pain/chest pain I would have been shocked! But here I am so I will wait and see what the 24hr ecg shows and go from there in the meantime thank you again take care and hopefully a speedy recovery 😊x please let us know about your MRI results x

[Elaine101 in reply to Retirement65]

Hi there, your symptoms sound so similar to mine, I was attending physio for shoulder pain.2 weeks on the pain across neck/shoulder and collar bone increased rapidly.

Shortness of breath, brain fog, pain and exhaustion, could only sleep sitting up.

Two GP visits/2 phone calls and 2 out of hours visits later ( all told me it was MSK) I was admitted to coronary care on Christmas day 2019.

Diagnosed with a pericardial effusion, and pleurisy, pericardiolcentesis procedure drained a litre of fluid. ( no wonder I couldn't breath)

Its scary, especially when you've been fit and active, I was 51.

I was diagnosed with crohn's in 2018, upshot is was it crohn's or a rare side effect to the crohn's meds? They don't know!!

2 years down the line, after sheilding for most of it, and a PE diagnosed 2020.

I still have collar/ neck pain and fatigue but take a day at a time.

I've learned not to push myself, GP referral for a stress test, but no word as yet.

Good luck with your ECG results, did they do an echo scan?

[Retirement65 in reply to Elaine101]

Hi there Elaine so sorry you have been through the mill! and obviously still suffering 😤do hope it clears up soon there doesn’t to seem be a definite answer with this problem I don’t think I’ve read on this forum how some people it’s been missed and then other people seem to get sorted pretty quickly - I have had a an echo which was around may time I have LVH but only mild due to hypertension my EF was between 60 and 65% so there were no concerns but like I said earlier it all started with a cough 12 months ago that took about 12 weeks to go then I feel like I’ve stumbled from one thing to another let’s hope we get somewhere soon Elaine take care keep me posted 😊x

[Sunnie2day in reply to Elaine101]

OH OUCH! I've had more than a few pericardiocentisis procedures (I have had recurrent pericarditis since the late 1990s) and know the unique sensation of horror (and pain, let's not pretend that topical really knocks all the pain of the insertion off) and utter relief as the effusion drains and breathing is suddenly ever so much easier!

[Geejay1709]

Thank you! Not silly at all, I experience massive anxiety, and it will be worse for you not knowing😊

[Retirement65 in reply to Geejay1709]

Well taking the time to reply to me is very much appreciated it does make a difference to how your feeling 😊x

[Gedaan]

Hi MazzieP. I was also rushed to hospital with a suspected heart attack. Thankfully, after many tests and an angiogram the diagnosis was pericarditis. Apparently, pericarditis presents the same symptoms as a heart attack. I was given Colchicine by the cardiologists and it worked fantastically. I didn't have myocarditis coupled with pericarditis.

[MazzieP in reply to Gedaan]

Hi Gedaan, I’m glad to hear the colchicine was so effective. I did have a 42 day course early in my treatment but my condition was quite advanced when it was diagnosed so sadly for me it didn’t work as effectively but I’m sure it has helped.

[Cavalierrubie]

I read your post and just wanted to say you are not alone. We are all here to help, support and chat to you with anything, however small, may be worrying you. Being alone takes courage when you are unwell, and can be frightening. There are some great people on here who have stopped me from going downhill. I am also alone. Don't suffer in silence. I don't have your problems at the moment but I do have AF etc. I hope you soon feel as if you are going forwards and I will put you in my prayers. Take care of yourself and get well soon.

[MazzieP in reply to Cavalierrubie]

Thank you for your kind and reassuring words. It does make a difference. I hope you too are keeping as well as you can be ❤️‍🩹

[Cavalierrubie]

God Bless xxx

[Sunnie2day]

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[HHH2017]

Hi MazzieP, I'm so sorry to hear that you are suffering. I had acute myopericarditis in Oct 2017 and was in hospital for a few weeks too.It is a scarey condition(s) and recovery can take a long time.

Im so pleased you found the forum, there are so many kind & supportive people on here with great understanding & insight. Do search & look at past posts and you will gain a huge amount of knowledge and advice. Most importantly you now know you aren't alone, surprisingly there are lots of us!!

Take your time, don't rush your recovery - I found it was one strp forward and 6 back if I pushed too hard. I am now as good as Im gonna get as I was unluckily left with some permanent damage to my heart.

I can walk well on the flat, play with my grandchildren 🥰and I even went paddleboarding for one hour recently so I am reasonably happy with my lot. I take my meds, walk daily & try to keep my wait down.

I hope you will start to see some steady progress and most importantly, will start to realise you aren't alone. If cardio rehab is available in your area do request this via GP/Cardiologist - i found it invaluable (sadly COVID has affected many classes) the expertise on offer was so reassuring whilst returning to exercise and the wonderful support from others on the course was fantastic. Good luck in your recovery.

[MazzieP in reply to HHH2017]

Thank you, it’s reassuring to know that you have had the same condition and can live a wholesome life after recovery. I’m still in the one step forward 6 back having had a bad night spent the whole of yesterday in bed, it’s so frustrating but I know that I’m over the worse. I’m waiting for an appointment with the cardiac rehab unit after my cardiologist decided to refer me. Did they give you a bespoke plan and how did they work out what your limits were so you didn’t overdo it?