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?
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FoodieVibes
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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.
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
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
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
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
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.
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.
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....
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