Myocarditis

[Ashleyhaymer99]

I’m 21 and I was diagnosed with Perimyocarditis on the 1st September and my troponin levels were just over 13,000. I’m still getting aches and sharp pains in my chest. Going to work sucks at the moment because I have to be on my feet the whole time and after a while it gets so bad I can barely breathe. Is this normal? When does this go back to normal? I recently had an echocardiogram and they said my heart was performing normally. So why am I still struggling? I’m gonna get in touch with my doctor but for people who’ve had this before, when does it go back to normal?

[Helly75]

Hi Ashley, firstly you should not be at work this soon ,you should be resting . You should have been told no strenuous exercise for 3 to 6 months . Were you given any meds or advice? My experience with myocarditis is quite rare apparently but most people get better given time. With a troponin level like that I'd be in my bed not moving for a while ,please please please rest & speak with your doctor

[Ashleyhaymer99 in reply to Helly75]

I think my biggest concern is work related because obviously sick pay is garbage and means I’m scraping by. I live with my partner and 1 year old so trying to get by on sick pay is very difficult. But going to work seems to be making my chest pains worse and I’m becoming increasingly exhausted. So I’m between a rock and a hard place at the moment. They only gave me 4 weeks of colchicine and that was it. It wasn’t a repeat prescription either. I’m gonna call my doctor tomorrow and see what they think. I just wanted to reach out to other people at the same time because it’s a rare condition and the internet isn’t the same as talking to a person who’s actually got/had it as well.

[Helly75 in reply to Ashleyhaymer99]

I know it's hard taking time off work but you'll be doing yourself more harm than good, I was given colchicine for 3 months along with ibuprofen so speak with your dr asap . You really should be resting for a good while before going back to work ,please let us know how you get on

[Lovetheoutdoors]

I had myocarditis Jan 2020. It took me some time to fully recover. I was on medication for 3 months and was initially told not to go outside my front door for 6 weeks! Do think you should be signed off work to allow your body to recover. Sounds like it's telling you I need a rest. Please take care.

[Sunnie2day]

Hiya, Ashley, and welcome to the club you never imagined you'd be joining aged only 21. Put the kettle on so you can have a cuppa or three whilst reading my lengthy but well worth the time reply, and open a word doc to copy-paste-print out and post on the fridge for offline reference - sadly, trust me, you'll be glad to have the information handy offline.

I have recurrent pericarditis and my consultant says he can't rule out my having had one or more concurrent bouts with myocarditis.

So, I'm well placed to address the answer to your question 'How long...', and perhaps it would be better if you sit down if you're not already...

Myopericarditis is a serious but treatable condition, usually a consequence of an injury like being thumped or having surgery including invasive dental work, or is post-viral - have you had Covid or 'the worst cold/flu ever'? Sometimes it's idiopathic meaning they have no clue what caused it.

Treatment and recovery can take mere weeks (6-8 weeks) or months, sometimes up to 24 months until the patient is fully recovered. Relapses can occur depending on the cause and severity of the condition, and how well the patient cares for her/himself during treatment and recovery.

Determining when you move from acute illness to recovery is usually determined by: chest listens for pericardial friction rub (a sound that tells if you still have effusion in the pericardial sac), blood draws (checking for continued infection), and echocardiogram or chest x-ray (again looking for effusion and with the echo, for 'normal' heartbeat/function).

ECG and echo results indicating normal heart function are a good determiner of being in the recovery stage but sadly until recovery is complete, some symptoms continue for months including breathlessness, 'dull ache' chest pain on the left side, and fatigue bordering on exhaustion if the patient 'pushes' to do more than they should.

Er, returning to work, especially a strenuous one like you describe (long periods of standing) is not advised for a full recovery, in fact it's a recipe for relapse. And honestly, repeated relapses lead to recurrent pericarditis - which is not fun and is life-changing owing to the lifestyle changes required to manage it.

Right, now I've completely shredded your Sunday afternoon, the following is a list of recovery and coping tricks I've acquired along the 20+years I've had recurrent pericarditis. The list should prove helpful for guiding you through recovery and preventing a relapse - follow the list for up to a year after you think you've recovered. I truly wish I didn't know what I know about the condition - if I'd had this list in 1998 I might not have recurrent pericarditis now. Please keep us updated on how you get on.

General tips for coping:

**Sleep with your upper body elevated - either several pillows stacked, bound, and laid lengthwise down the bed, or a wedge pillow, or an adjustable back rest

**Avoid sleeping on your left side as the pain is worse if you put weight on the inflamed pericardium sleeping on your left side

**Avoid heat, humidity, and mould - no hot tubbing, sauna, steam bath, long hot showers even though directing hot shower spray at your left side is nice for temporary pain relief, the humidity WILL cause the pain to increase soon after leaving the shower

**A hot water bottle laid along the left side of your rib cage can go a long way towards easing pain for a longer lasting bit of pain relief

**Avoid strenuous activity - DO NOT think a good day means you can catch-up things you have had to 'let go', overdoing on a good day only leads to several bad ones

**Try to get at least 7 hours sleep per night. Eight is better but 7 is good

**Keep to a nutritious well balanced diet with lots of green leafy veg, fruit, and high quality protein like meat and cheese (but try to keep to a lower salt content if you have effusion - don't go overboard on lowering salt intake but try to keep it under 5g per day)

**Be alert to symptoms your condition is worsening:

• 'swinging fever' where it's high, then lower, then higher again in a matter of hours over a day

• shortness of breath on slightest exertion and/or waking you in the middle of the night

• night cough or cough when lying down

• 'fat fingers' and other signs of fluid retention including ‘shiny skin’ - these are signs of building pericardial effusion that could lead to a condition called 'cardiac tamponade' - when excess fluid build-up in your pericardium reaches a level that is beginning to affect heart function (like, beating). It is a life-threatening condition

[Ashleyhaymer99 in reply to Sunnie2day]

Thank you. That was quite the read but it was informative and coming from someone who actually knows what’s going on from experience so definitely worth it. I’m sorry to hear that you’ve had this for so long because I was diagnosed just over 5 weeks ago and I’m hating every minute. I’m going to be contacting my doctor tomorrow but I wanted to know what people who have actually had this have done about it and how they’ve recovered. I’m just hoping this can go back to normal and I don’t have it coming back for years to come.

[Sunnie2day in reply to Ashleyhaymer99]

Please keep us updated as you go through recovery. It's definitely a 'I hate having this!' condition because it just drags on for what seems forever - but eventually it is done with and hopefully this will be a one-off event in your life.

[Tomd158]

Hi Ashley I'm 5 months into peri/myocarditis 33 years old.

My tropinin was only 120 when in hospital

At first I didn't feel too bad and it wasn't until a few weeks after I left hospital all the prolonged symptoms started.

Mild palpitations upper back pain / burning and same in chest.

Unlike some on here my symptoms have never been too bad but they have been persistent.

My MRI 3 months ago showed Mild inflammation on my heart.

My job too is quite manual and I haven't been able to go back yet, as every time I over exert myself my pain gets worse and takes a few days to reduce back down to normal levels.

By the looks of it a lot of people recover a lot quicker than me so hopefully your recovery won't be as long but I can't stress enough you need to rest, rest, rest and more rest. Also try eating a anti inflammation diet.

Personally I think my recovery is taking so long because I didn't rest enough at the beginning (big regret)

If your anything like me I find it very hard to sit down and do nothing but working a hard job is the last thing you should be doing

Your heart and recovery is the most important thing right now.

Hope this helps

Thanks

Tom

[Finkamist in reply to Tomd158]

Hi Tom, your symptoms sound just like mine and so I was wondering how you are getting on? I’m 28 and my myocarditis started with an acute episode of breathlessness, palpations and dizziness one day. I then had about a week of the same plus fatigue before anyone in the nhs took me seriously. I ended up in hospital with raised troponin and was discharged two days later following a normal ecg and echo. In the following week, I felt a bit better, still palpations if I did more than walk slowly and still fatigue. I then went back to work (the irony is that I work for the BHF) but took it easy, sitting whenever possible. It’s three weeks since the onset now and I’m starting to get heartburn, back ache and chest discomfort in addition to the palpations but otherwise feel okay. What I’m interested in is the relationship between the severity of peoples symptoms vs their recovery. Ie how long will I be stuck like this and would I be better off lying in bed!

[Sunnie2day in reply to Finkamist]

Hiya Finkamist, and I hate to be the one to tell you this but 20+years experience with recurrent pericarditis has taught me severity of an acute flare (or initial case) doesn't always correlate to length of recovery time.

Scroll back up in this thread to my (ahem) long post with helpful coping tips I've accumulated to use during and after an acute flare. The myocarditis members here have said they find these tips helpful with any of the carditis conditions (pericarditis, myocarditis, myopericarditis, and endocarditis) - feel free to copy-paste to a printable document to post somewhere in your home for offline reference when the frustration (ok, and pain, any of the carditis conditions come with pain ranging from 'dull ache' to sharp stabbing to sharp pinching) gets to you in the middle of the night.

[CASandKim]

Would you expect to be seen by a cardiologist for myocarditis and pericarditis? My 21 son in law has been ill since Jan and so far only seen doctors in a&e when he's been admitted with raised troponin levels then sent home again. He's just been given appointment for MRI in May. Should he be insisting on seeing cardiologist?