Advice for Recovering From Myopericarditis (16 months later)?

[Gazzabangers]

Hi guys, just wondering if there’s anything I can do as its been a long time since the initial infection and things have plateaued now over a year.

I originally was very ill with chest and left arm pains, breathing problems, swelling to chest, fever etc in may 2020. I had trouble getting help due to lockdowns and health services not in proper operation, and a year later finally had an MRI which showed a previous myopericarditis and subepicardial scarring.

My experience with cardiology hasn’t been good and its taken them over a year to identify this, so I’m looking for advice elsewhere.

I was an otherwise healthy, extremely active 31 year old but now I struggle to walk around the park, can’t breathe very well, especially when laying down, and have a lot of discomfort and numbness in chest and left side especially on exertion.

Thanks in advance!

[Helly75]

Hi, sorry your experience wasnt good ,mine wasnt either, 3 years of thinking I'd lost my mind but I knew something was wrong. I had a mild case in 2018 & just didn't get better, followed by a bigger episode in april this year. I get the numbness in my left chest & back . I cant lay down either ,I've had about 2 hours sleep and had to sit upright on a chair downstairs all night 🥴 were you given any medication at the time?

[Gazzabangers in reply to Helly75]

Ohh I’m really sorry to hear that, hopefully we’ll get some decent advice in this thread.

Well initially i was getting misdiagnosed or passed around the system (even though I knew what I had from researching) so have been given a load of random things but nothing for myopericarditis other than aspirin and statins (which I don’t believe is necessary).

Yeah the laying down thing is so frustrating! The fatigue can be so bad that all you wanna do is lay down but when you lay down you can’t breathe, catch 22!

Have you found anything that works? I’ve found anything more than extremely light exercise, basically slow walking, just makes it worse so am gonna back off on that. I’m going to really try and work on reducing inflammation through diet and see how that pans out (intermittent fasting, low sugar, low carb etc.)

[Helly75 in reply to Gazzabangers]

They gave me colchicine & ibuprofen to start with which changed nothing & made me sick, the suggestion now is steroids but I said no I'm that afraid of covid & getting infections. I used to be really active & worked full time, now I'm fit for nothing! I seem to think I'm improving for short periods then the symptoms come back. I cut out lots of foods & drinks years ago but didnt seem to change anything, eating is a bit of an issue for me at the minute ,absolutely everything I do annoys my heart ,I'm literally no help to you at all 😆 but at least you know you're not alone

[Gazzabangers]

Eeek. So sorry to hear that. Yeah i find its a bit of a negative feedback loop, you get stressed because of the heart problems and then the stress probably worsens the heart problems.

Just got to try to avoid mainstream media and find ways to relax and go easy, hopefully after a while our bodies will get the message and start to heal 🙏

[Helly75 in reply to Gazzabangers]

We are expected to ignore the negative though & to keep quiet about it ! My body would need to get a move on I'm sick of it lol 🤗

[Gazzabangers in reply to Helly75]

Welcome to the Cult of Scientismwhere the globalist narrative must NEVER be challenged or questioned.

[Milkfairy Heart Star in reply to Gazzabangers]

This is the BHF Healthunlocked forum. The BHF is one of the largest independent funders of research into cardiovascular disease.

Forum members do enjoy a discussion of different perspectives with respect to all those involved.

Perhaps what they don't appreciate is doctor bashing and extreme anti science views.

I suggest you read the guidelines of the forum.

healthunlocked.com/bhf/post...

[Gazzabangers in reply to Milkfairy]

Please don’t gaslight our personal experiences suffering extreme negligence within the national health service.

My views are pro-science. Science is not a government controlled dogma and is at its very essence a subject which must be openly discussed, challenged and constantly evolving.

[Milkfairy Heart Star in reply to Gazzabangers]

We all have had experiences good and bad.

Have you been able to have some support to manage your distress?

[Gazzabangers in reply to Milkfairy]

I’m just trying to get some help recovering as doctors have let me down. Please have some empathy and stop harassing us.

[Milkfairy Heart Star in reply to Gazzabangers]

I acknowledge your anger.

However, please can I ask you to respect all of us here on the forum?

Do you feel able to raise your concerns about your care with the hospital responsible?

[Gazzabangers in reply to Milkfairy]

Thanks for your concern.

[Gazzabangers]

Wow that’s amazing you’ve progressed so far! Yeah I’m going to try a diff cardiologist as I feel like the one i’ve been dealing with has been a bit of a joke and my healing has plateaued for a while now.

Thanks for the advice, the pillow sounds like a great idea. Good luck with your recovery

[Gazzabangers]

Thanks for the great advice, i’ll check out the fb groups for sure!