Myocarditis questions

[Reggiepred]

Previously very fit and healthy, I got diagnosed with idiopathic myopericarditis 7 weeks ago. Had some chest and back pain and with colchicine, and ibuprofen it resolved totally within 2-3 weeks. Colchicine has to be taken til September to help lower chance of a pericarditis relapse.

Myocarditis - My EF on an MRI was 46%. I was prescribed bisoprolol and ramipril. It’s now been 7 weeks since using them.

For those who’ve had an acute bout of myocarditis/myopericarditis, and recovered within weeks, how long did you find you struggled with fatigue (mental or physical)?

For my part, I notice that while I’ve had no pains for a month, I still get mentally fatigued when I push myself to work hard. I’ve wound up taking caffeine and nicotine gum to fight this off but that’s not ideal as they will counteract the beta blocker.

[Cookie95]

Hi! Mine resolved within a week but I struggled with the symptoms for 8 months. I had chest pain every day, shortness of breath, and as you said mental and physical fatigue. I had to rest a lot, change my diet radically to real foods and be very very patient! A year after, I still have some residual pains when I overexert myself... but I’ve learnt to listen to my heart and stop when it asks for it

[Reggiepred in reply to Cookie95]

Thanks for replying back to me. When you say resolved within a week, do you mean the aches and pains resolved that quickly as you mentioned you had symptoms for 8 months?

You mention you have residual pains upon exertion, I’m sorry to hear that. Is that pain in the chest?

I’m glad you mentioned your diet. My cardiologist seems to consider diet irrelevant - was change in diet their prompting based on your specific symptoms?

[Cookie95 in reply to Reggiepred]

Yes so I meant that within one week the inflammation of the myocardium and the pericardium went away (I had both, myopericarditis). I spent that week at the hospital and they discharged me when my troponin levels normalized and there was no sign of inflammation left. So medically speaking, my myocarditis went away within 1 week. Nevertheless (!), the chest pressure and shortness of breath continued for 8 months after, with several trips to the A&E thinking I was having heart attacks due to the strong chest pressure, but after blood analysis, MRIs and ECGs I was always told my heart looked perfectly ok, and that all those symptoms might be due to anxiety or residual muscle or nerve damage. That’s the issue with myocarditis, it’s a really frustrating thing to have, it’s almost like an invisible issue that persists after the medical parameters have normalized so doctors can’t really do much about. My friend Sunnie2day here knows that well too.

The residual pain it’s in the chest, yes. Tends to be in the center or the chest or center-left-upwards towards the heart (hope that makes sense haha).

Diet was honestly something I ended up paying a lot of attention given that it is one of the only few things I can control over my body. I was desperate because none of the symptoms were improving at all - day in and day out. So it ended up being a change of lifestyle, dropped processed foods, things with ingredients on the label I don’t understand, etc. I can’t fully say, with all certainty, that diet was what improved my pains and fatigue, because probably time and resting played a huge role too, but improving my diet definitely made me feel healthier and lighter.

I had 3 different cardiologists (one from the hospital, and 2 private ones) and none of them ever mentioned the importance of a diet, but there we go. I think health issues are multi-disciplinary, and one specialist can’t know it all, so it’s up to one to do the research and inform oneself.

[Sunnie2day]

Define 'recovered'. There's recovered as in the acute stage is cleared, and then there's really recovered - meaning everything including the fatigue and brain fog (and some residual pain depending on if the pain ended with the acute stage or a wee bit of barely noticeable pain lingered on) finally ended.

My latest adventure in pericardial joy took ten months for me to recover fully - meaning no chest pain, no left side 'ache', no shortness of breath, no fatigue that made going up even a slight incline or two-three stairs the most daunting thing I could contemplate, and mental acuity fully restored - I looked fine, to someone who didn't know me, I sounded fine. But I couldn't concentrate and I would see people's lips move but what they were actually saying barely penetrated.

I have recurrent pericarditis. My latest acute flare was possibly actually myopericarditis but by the time I got to the doctor he wasn't 100% sure either way. I became unwell towards the end of March 2019. I wasn't 'back to normal' (what passes for normal for me) until late January 2020. Usually full recovery takes me around three months but the suspected additional complication meant a far longer 'recovery'.

[Reggiepred in reply to Sunnie2day]

Thanks for replying sunny.

By recovered I meant an absence of any physical pain or issues with my breathing. I’ve managed to walk for an hour at a time without any issues except feeing unfit now I can’t exercise.

On the other hand, what I’m definitely struggling with is feeling mentally lethargic, I’d assumed it was the meds but it’s still with me and becoming a real drag. I never expected mental fatigue to be an issue at all and never had an issue before with it but two months since I developed initial symptoms I’m having a hard time being as productive as I need to be.

[Sunnie2day in reply to Reggiepred]

What many of us call 'the brain fog' is debilitating. As I wrote, we look fine. We seem fine and it's only people who know us well who recognise our minds just aren't as 'sharp' as usual. I know from personal experience it makes full-time work difficult especially if paid employment is 'brain work' (and mine was - I'm a retired statistician).

It is quite worrying to realise mental acuity/agility is compromised but I can reassure you eventually you will come out of the fog. It takes time, every one of us is different in how soon the fog takes to lift.

[Fluffybee in reply to Sunnie2day]

I think one of the difficult things of having brain fog or being completely lethargic and totally exhausted after such a small activity ‘taking my dog for a walk for 5 minutes’ literally.

I’ve had to stop about 80% of my work but when I explain I have a condition they always say, but you look so well !!!!!! If only 🥺

[Sunnie2day in reply to Fluffybee]

If I had a quid for every time someone said to me 'But you look so well!', I'd be a very rich Lady Curmudgeon.

On the amusing (but not really) side, I was in such a brain fog with my last acute flare I didn't realise I was staggering on my increasing difficult morning walk until one of my neighbours primly told me it was most unladylike to be out and about 'whilst under the influence, my dear!' - dozy mare thought I was drunk at 9am. (Forgive my language but then again, lol, she's the town curtain twitcher and you really don't want to know what others call her, it's far worse than what I just wrote!)

Er, no, not drunk - I was on the verge of cardiac tamponade but thanks to the brain fog, I wasn't recognising just how very unwell I was.

[Reggiepred in reply to Sunnie2day]

It seems I’m far from alone in having this fatigue but a question for you guys. Do you ever have periods where’s it’s exclusively mental fatigue or has it been physical and mental co-existing together?

What kind of time out from work did people take?

I own my own business and while i was semi-retired it’s still very challenging work to have to sit through, lots of research and analysing of problems etc. Nothing physical at all so my expectations were I should be fine with it but it’s not turning out to be the case at all.

[Sunnie2day in reply to Reggiepred]

For me, the deep physical fatigue (despite not having done anything to warrant such utter exhaustion - besides be in an acute flare, that is) took around eight months to end. The mental fatigue lasted ten months - and I have to be honest here and admit if I let myself become physically tired, the brain fog creeps in.

Last week I worked too long in the garden on a rare sunny day (I'm in NE Scotland) then topped the day's work off with a walk to the local supermarket. That evening I was listening to the television with a half-ear and looking through my inbox - wasn't until the next morning I realised I'd 'read' over 100 emails then deleted them.

The next morning I opened my inbox, noticed my bin was 100+full. Went to the bin page and couldn't recall having read any of those emails. Most were unimportant but at least 20 were very important indeed.

I know it was from the mental fatigue that goes hand-in-hand with physical fatigue.

[AM53]

Hi I’m newly diagnosed with acute myocarditis. Had 4 days in hospital last week due to severe chest pain and raised tropinon, and should have probably been in a little more, but let home for Christmas Day. Cardiac MRI showed diagnosis with inflammation and oedema, angiogram clear. Heart rate up even with simple activities. Exhausted all the time. Brain fog awful. Have a follow up in 4 months for a cardiac MRI and need to see Gp next week, if chest pain doesn’t resolve. Was sent home on no medications and just advised to use pain relief, and no strenuous activities for 4-6 weeks, plus signed off for a month. I’m really hoping the fatigue improves soon.