Six months ago I was diagnosed with miocarditis and pericarditis (both). I had an angiogram and there were not obstructions. my hearth was okay. I was on sick leave for six months I started phased return to work this week. I still get a lot of pain on my left side. I do not if this is normal.
My health has been very bumpy over the last months and last week I had a terrible flu and a chest infection. I was given antibiotics. I have been suffering with extrem anxiety and panic attacks. Now I am concern my miocarditis will come back because of the flu. I am afraid of being hospitalized again.
Last Novermber I had a MRI Scan and I still do not have the results. I have been trying to contact the cardiologist outpatient service to inquire about the results but no one picks up the phone.
I do not know what to do. I miss running, walking and swimming but I am too afraid to do physical activity as I am afraid of getting ill again.
I wonder much longer I need to wait for the MIR results to come back.
Written by
MsHopee
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I've never had myocarditis but I do have recurrent pericarditis and am under a cardiologist's care. Pain in your left side post-pericarditis is not pleasant but many pericarditis patients (myself included) report the chest pain lingers for months - and in some, like me with recurrent pericarditis, the chest pain never really goes away. It does, however, usually drop to a level easy to 'get used to' and usually described as 'background noise' by those of us enduring it.
If your pain is not diminishing to that low level now you're six months into recovery, you should try to get a consult with your GP and/or the medical professional who prescribed the antibiotics for your recent chest infection - that person is your 'go-to' right now.
I empathise with your concern about the myocarditis coming back (I worry every time I cough or feel a cold coming on that it's the pericarditis trying to make another appearance), and also with your anxiety and panic attacks. Again, this is something you need to bring up to the medic who prescribed the antibiotics.
As for your MRI results taking so long to be revealed to you, check with your GP practice manager - it is possible the consultant has sent a letter you have every right to request a copy of, and to book an appointment with your GP to discuss those results.
More about the MRI - a lengthy delay hearing the results is actually a good thing - if the tech or doctor performing the MRI had seen anything 'imminent' at the time of the scan, you would have been admitted to hospital right then and there. They let you go home so you can generally assume whatever they saw on the scan whilst it was being performed was not anything serious enough to mean you needed to have immediate hospital admittance.
Finally, oh my how I hear you about being worried about rebuilding your fitness! Pericarditis is such a wretched illness that makes physical activity beyond making it to the kitchen and bathroom seem daunting.
I started (once the chest pain throttled back to a 'dull roar' and the breathlessness eased off quickly on rest) with short five minute walks then built up a little more each day. I always do a small bit of stretching warm-up before beginning my twice daily walk, and start the walks at a slow pace to avoid triggering what the cardiologist is calling angina.
Thanks for your reply. That helps a lot. I have both myocarditis and pericarditis. The pericarditis comes back each time I have a cold and I am all the time worried.
Oh dear, that can't be pleasant for the pericarditis to come back every time you catch cold! Have you been investigated for relapsing pericarditis - sometimes the acute flare is actually the one before coming back and that's 'relapsing' as it is still the 'original' case.
Or have you been diagnosed as having 'recurrent' pericarditis. Do the medics 'clear' a flare - no pericardial friction rub sound under stethoscope, no infection or inflammation showing in blood work usually means 'clear' - only for a new acute flare to appear months later? That's 'recurrent' (what I have) and is a right pain to manage figuratively and literally, sadly.
The illness itself is difficult, and the reality is we who have it usually don't look unwell which makes it that much harder to get even trained medics to recognise how unwell we really are. I had a tech start to tell me off for wasting her time as I seemed 'so healthy' only for her to go very quiet as the images formed on the scan monitor.
My problem is that most of the diagnoses of the recurrent pericarditis have been done in A&E as I go there when I can not manage the pain any longer with paracetamol and Ibuprofen. My GP tells me that it is a muscular pain. But it is not!!! It has been very frustrating. Once a dr ask me if I had mental health issues and that might explain the pain.
Oh my word, asking you if you have mental health issues is beyond 'out of order' - I really think I'd complain to someone (depends on your trust area as to who exactly you complain to) about that!
I'd also talk to the GP asking why if you've been diagnosed with recurrent pericarditis, you're not being referred to a cardiologist or treated by the GP for the condition - it is manageable but it wants supervision. Recurrent pericarditis is rather serious.
Have you thought about going private to see a cardiologist or pericardial specialist?
Hi! I also had myocarditis and pericarditis exactly 6 months ago tomorrow!! So trust me I understand you 100%. I keep on having symptoms despite all my tests being normal. I miss my old life - been on sick leave for a couple of months now too. I miss sports terribly as well.
I have been advised to do CARDIAC REHABILITATION - and I’m very exited to start it. Nevertheless, please wait until your MRI results are back and confirm there’s no more inflammation, etc.
Please let me know if there’s anything else from my experience you want me to talk about. I had incredible support from this group and helped me to understand this very weird condition. Anxiety and worry handling has been a very important part of my (super slow) recovery.
Thanks for your reply and support. I asked for Cardiac Rehabilitation that because I do not have coronary damage they said that I do not qualify for it. I am back at work now [phased return] but I really struggle with chest pain while sitting on the computer. And the lack of exercise is creating loads of back problems.
If you don’t qualify try getting referred to a phisio that’s has experience with people with heart issues. What’s important here is that you get back to your previous conditioning (or better) in a supervised setting.
What not many people tell you is that your heart has gone through a traumatic experience and there needs to be a process of bringing the muscle back to normal, we the work is entirely on us despite having the help of professionals.
In my case, I was on and off work for the first 3 months. My heart pains and shortness of breath weren’t allowing me to perform at all. It was sometimes embarrassing as I couldn’t even walk and talk at the same time, and people just don’t get it if one looks young. I have been on leave after that and I’m doing a lot better in terms of pains (not fully gone but like 50% less often) partly thanks to the time off and partly thanks to the physiotherapy.
That is encouraging. Thanks so much for sharing your experience. Can I get the referral to the phisio through my GP? They have been quite dismissive. I used to be a very active person and now I am afraid of walking up the stairs. But I think that not doing any exercise will also negatively impact in my overall health. It is like a catch 24 situation.
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