Hi, This is the situation. I was diagnosed with myocarditis a while back, just recently I did blood tests and X-rays and they said everything is ok; no inflammation etc. YET I still feel lots of chest pain and tightness. Docs are saying it's not the heart, which I struggle to believe.
QUESTION:
Has anyone experienced this and what is your advice?
hi I wrote a reply earlier but deleted it as I don’t know anything about myocarditis.
But what I do know is how hard and often demoralising it is when we know what we feel and experience but we can’t get answers from doctors.
Lots of us here understand that one.
BUT you know what you feel and it is real. Keep remembering that as sometimes we start to doubt ourselves when people keep telling us otherwise.
If they’re saying it’s not the heart then ask why they think that and if not the heart what is the cause then? It may not be the heart but at least you will know
this can be a hard and long journey (I always felt I was waiting for the doctors to catch up with what I already knew) and requires a lot of pushing from ourselves.
We have to advocate for ourselves - that’s the key lesson I learnt from people here who had been at this longer than I had with little known conditions.
Basically you need to be a (polite) pest and get your answers / diagnosis.
good luck, remember what you feel is real and keep going!
You're absolutely right we need to advocate for ourselves. I did ask the doc if it's not the heart then what's causing it, so they gave the standard reply which is take it up with your GP. So looks like the investigation will take a while.
The feeling is crazy because it feels like when I first got myocarditis; heavy and sharp pain. And I haven't been much movement for it to be muscle related.
But yeah thank for you response fanfab1!
I've had myocarditis 3 times now & often experience chest pain & extreme tiredness in between the incidents . I also had normal ecg ,blood tests & chest xrays, I was made to feel like I was mentally unhinged & was starting to believe it about myself too at one point
Wow three time, that's sounds very challenging - How are coping now? If I may ask, did it leave any scaring on the heart?
Yeah there is a big mental challenge with this all, you have to believe in yourself and trust what you feel. Easier said than done though.
Thank you for your response Helly75!
I still have no answers as to why but my situation is very unusual, I had myocarditis early May this year and by the end of May I had a major heart attack & went into cardiac arrest, had to have a stent so I'm not coping very well at all , still can't quite believe it . No heart muscle damage which is a miracle
Well my thoughts are with you, hope you recover and don't get that again!That's great that you don't have muscle damage.
It may take a while to for it to settle down and for you to believe it, even me, I'm still not at terms with this.
Have you had any follow ups since the major attack?
No it's all very new to me ,I'm in Northern Ireland & we just go to cardiac rehab here ,not sure about anywhere else. No real follow up for myocarditis here either, in my own experience they don't seem too concerned about it
So I'm guessing you don't feel supported by the docs or med team?
It's very important us patients feel supported, but I don't think they care much. Not all of them of course.
Is your rehab doing you well??
I felt I was never listened to with the myocarditis side of things anyway ,it's one of those conditions that the book says everyone gets better in 3 to 6 months but that was never my experience, I start rehab on the 19th ,no idea what that involves yet
Yeah I've heard that too often as well, the "standard quota of 3-6 months" but everyone is different I guess and we are prime examples.
I hope the rehab goes alright for you!
I'm assuming you've been on medication for a while then?
Yes lots of meds for the heart attack & colchicine for myocarditis, supposed to be taking an anti inflammatory aswell but I wouldn't touch them
Hope everything goes well for you.
So sorry you are going through this difficult time.
I've had two episodes of myocarditis, both requiring hospitalisation.Fortunately I'm now under a cardiologist who specialises in Myocarditis and feel listened to and believed when I tell him I feel unwell.
I'm scheduled for lots of follow up in the coming months.
Sadly there are plenty of other Dr's, including in A&E that need education about the condition.
Sorry to hear that. I hope it doesn't come back to you.
That's interesting, there are actually doctors in the NHS that specialise in myocarditis! Great, I'm going to try and seek that out for myself too. Thank you so much for that.
And yes, many have inadequate knowledge about a condition which is so deadly!! Which leaves us sometimes having to fill in the gaps and do the research.
Is yours viral myocarditis?
Presumed viral as I had a throat infection 10 days before the last episode.Sadly the relevant tests were not done because it all happened during the doctors strike. I was informed that this was unfortunate by the consultant during my first outpatient appointment, post discharge, after my latest episode.
My latest MRI shows scar consistent with myocarditis and for various reasons, including this being a second experience, I've been referred to the inherited cardiac conditions team for assessment.
The first of two appointments with them is in October.
Plus I'll be seen by my cardiologist. All in all I'm feeling supported, if a little alone on a day to day basis, with my ongoing issues.
Yeah they said mine was viral as well. It's great that you have support from the docs with appointments and investigations, and more importantly, you feel supported.
I think based on what you said I'll definitely try and get extra support too, as it can be offered but we have to speak up for it.
You feel alone with your ongoing issues??
You need to advocate for yourself to feel supported and hopefully get answers.
The majority of people who experience myocarditis go on to have no further problems. Which is a comfort.
My ongoing issues are minor, lightheaded, dizziness, headaches, low energy. I wonder if some of that could be blamed on Bisoprolol.
I agree 100%.
Bysoprolol is a funny one...
How long have you been on that for?
I've read that the side affects start to really kick in once a person has been taking it for a long time, I don't know what is a long time, maybe a year plus I guess....
Intro
Post AVR 3 & 1/2 weeks, Atrial Fibrillation 
CAD and OMT/STATINS
Pain under arm pit area following by pass surgery.
Wrong medication sorted
