Myocarditis: Hi all, new member here I... - British Heart Fou...

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Myocarditis

JedG profile image
JedG
23 Replies

Hi all, new member here I’m a 24 year old male.

I was recently admitted to A&E 2 months with a stabbing pain in my chest and back, I had an ECG and blood tests, my ECG showed the presence of Q waves and there was no troponin, an X-Ray did show that my left atrium was slightly enlargened, fast forward I had an ultrasound that confirmed the enlargened atrium, mild regurgitation and an anomaly in my heart wall which was causing an EF of 45%. I’ve had my appointment with my cardiologist who reckons it’s myocarditis and assured me that I would be fine, he booked me in for an MRI to confirm if there’s any scarring which I’m now just waiting on results from.

In between the cardiology appointment and a few days before the MRI I was feeling fine to the point I was ready to go back to the gym, no chest pain/discomfort, however I have since come down with the flu and have some slight discomfort again (nothing too bad), it has though trigger massive health anxiety, every pinch of pressure I feel in my arms and legs sends me down a rabbit hole and I can’t stop checking for swelling.

I was just wondering how everyone else’s experiences have been and looking for some support.

Look forward to hearing back from people🙂

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JedG
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23 Replies

Hello :-)

I do not suffer with what you have been diagnosed with I had heart attacks and Bypasses but I very much relate t after any heart issues it is quite common that when we start to feel any sensations we can go into panic mode which once your cardiologist has spoken to you again you can explain this and I am sure he will help reassure you :-)

I know there are members on here that have been diagnosed with your condition and members to as young as you who I am sure when they see your post they will give you some really helpful feedback :-) x

JedG profile image
JedG in reply to

Hello, thank you for your response🙂 I’m really sorry to hear what you’ve been through, how has your recovery and way of life been since? I hope you’ve been okay!

It is very daunting isn’t it, especially I suppose when you’re still waiting on results to fully know the extent of the issue, I have taken some solace in reading other peoples posts and their recoveries and how nice people have been generally on here 🙂

in reply to JedG

Hello :-)

Well I had health anxiety before this all happened so it really has escalated that in me why I can relate so much when people are worried it is not a nice feeling

I am on a slow recovery but hopefully I will get there and thank you for asking :-)

I agree the waiting is always the worst bit but once you get there no matter what you know what you are dealing with and what you need to do and I do hope you do not have to wait much longer

This is a lovely Community and I hope you will find it helpful some lovely members and sometimes even if we don't have all the answers it really helps to get everything down and know someone is listening to you :-)

Please let us know how you get on :-) x

Salient7 profile image
Salient7 in reply to

My friend has a very severe case and tried CDS Powder . Chlorine Dioxide (CDS) is a fascinating substance, As soon as CDS comes into contact with acid it becomes unstable and releases nascent oxygen. It is important to understand that all unhealthy microorganisms are anaerobic (cannot survive in an oxygen-rich environment). Nascent oxygen is a particularly potent oxidizing agent for anaerobic organisms because it is essentially a free radical seeking not one; but two electrons.

Chlorine dioxide is an oxidant and just like oxygen it supports the body and immune system, only targeting unhealthy microorganisms. CDS selectively targets the anaerobic not the aerobic. It does this via electrical charge and acidity; it targets pathogens based on their acidity and electric charge. It bypasses good bacteria and goes after the unhealthy ones. It's weaker than oxygen, while strong enough to go after all pathogens; viruses, bacteria and fungus without harming healthy tissues and oxygen loving microorganisms. It surrounds pathogens and through the process of oxidation, it electrically rips the pathogen apart by stealing the electrons.

It has many applications from the food and beverage industry where it is used as an antimicrobial agent for washing foods, cleaning products, and disinfecting liquids. It's used in the pharmaceutical and medical device industry for contamination control and sterility. Hospitals, schools, and daycares use it as a sterilizing disinfectant to prevent dangerous pathogens like MRSA, coronavirus, and mold spores.

bitchute.com/video/CGNArC0i...

Valentina98 profile image
Valentina98

Hi Jed

I'm also 24 about 3 months ago I had a heart attack, once I was at the hospital I found out that I also had myocarditis. I do have some scaring which was a factor to my heart attack as well as a few other issues.

I suffer with Depression and Anxiety before all this and my anxiety has been raised, I've been to a&e twice with chest pains. Once was a panic attack and the most recent one was due to me over doing it.

Anyway what I'm trying to say is if you need anything, feel free to message me

V x

JedG profile image
JedG in reply to Valentina98

Hi Valentina, I’m sorry to hear what you’ve been through it must’ve been a real shock! How have you been coping? I hope your recovery is going well 🙂

Thank you for your response, it’s nice to hear from someone of a similar age having been through this, how have you found the support you’ve received since? :)

Identiy profile image
Identiy

Found to have a 4 cm x 1.5 cm scar in the wall of the left ventricle when cardiac MRI done 3 years ago. Known to have significant abnormalities on ECG since age 19 when one taken for routine purposes. Assessed by cardiologist at that point and followed up for some months. ECG never changed and has never changed since then. Inverted T waves and ST depression/elevation

Now 73 and played international rugby for four years without knowing I had this problem but aware for many years that EF was at the lower limit of normal at +/-51%.

However, it never affected me and I was, and still am, very fit

Arteries fine.

In retrospect, scar was caused by running a competitive long distance race aged 15 several days after being ill with the flu. Felt very ill and had arrhythmias at the end of the race - came last!!

Rested for some months as no one knew what the problem was in 1965.

However, still going strong!!

Rest, get it assessed, and when cleared, get on with it.

2Livebetter profile image
2Livebetter

very similar story and symptoms. They say I can do what I feel comfortable doing and it will take 3months + for recovery. But I haven’t been able to run since July 22, even cycling yesterday has left me with breathlessness, chest tightness, fatigue and aching limbs with flu like symptoms forcing me to rest. I’ve not been able to manage work yet for months. Now I question is some of this just anxiety? Chest pain is definitely improving with meds, and BP is now normal although I need to work on cholesterol. But it’s the fatigue which is the biggest problem as if I try and do stuff it then sets me back for days at a time and I get low and frustrated. I’ve just sighed up to steps to well being which starts on 19th to help with managing fatigue

Hi Jed,

I was diagnosed with myocarditis back in July last year - you can click through my profile if you want to read my previous posts.

Best advice is to rest, rest and rest some more. Most doctors advise 3-6 months recovery although this does seem to vary. And if you are fighting an infection it can cause flare ups, but they do go away.

Take it easy, and hopefully your MRI comes back clear. If you've any questions please ask - this forum has been a wonderful source of support.

2Livebetter profile image
2Livebetter

I could do with a chat for this or a link to a group please

Captain_Birdseye profile image
Captain_Birdseye in reply to 2Livebetter

If you click on my profile and read my previous posts with replies you'll see my story... or search myocarditis or pericarditis on the search bar.

A lot of posts from a couple of years ago have been removed (frustratingly) because they mention the virus that caused the pandemic - the forum does have rules on this, but there are work arounds (voldemort, the virus that can't be named etc). When posting or replying, just stick to forum rules and we can keep sharing experiences and support.

in reply to 2Livebetter

sent you a message x

Sunnyday123 profile image
Sunnyday123

Hi Jed,

A bit older than you, in my 50’s, but was diagnosed with myocarditis back in September, and had high troponin levels. What follow was months of tests on heart to check nothing more and what felt like hundreds (it wasn’t) of blood test to try and find cause. Nothing specific was found, but at least I know many things I dont have now.

With drugs all returned to normal but since had Covid and in last few days been getting some mild chest pains, and part of me worrying it’s all come back again., but so many other things it could be and don’t want to rush to hospital after every twinge, but I do understand how you are feeling.

Consultants did warn it could take 6 months to fully recover

Any way take care and hope you on mend soon

Holiday51 profile image
Holiday51

Hi, I’m a 51 lady and at the end of September had what I would call a strain like feeling in my chest and slight discomfort in my back but put it down to stress as my father in law has just died but as this started to make me feel unwell and I started to panic I called 111 who advised me to go to A & E. After being monitored and having had a blood test I was told I had had a heart attack which was the most surreal moment in my life. Me and my husband just looked at each other in disbelief really, I was in hospital for a week and had all the tests which showed that my arteries and heart all looked ok which was positive but a MRI was required. I left hospital which lots of medication and was just waiting for my MRI appointment. Back at home for me the nights were the worst when I was in bed my mind was racing I don’t think I slept for weeks. Even saying heart attack to people was really hard mentally it pushed me to my limits. I had a MRI and saw my consultant with the results and it was concluded that I had Myocarditis and told to just basically carry on which was obviously the best outcome but for me those 6 weeks I thought I had had a heart attack have really affected me and still now I have good and bad days so don’t beat yourself up to much I think it will just take time.

Lovetheoutdoors profile image
Lovetheoutdoors

3 years ago I went into hospital where I was told I'd had a heart attack after having bloods taken. However further tests showed I had myocarditis and had not had a heart attack. I was given gout medication for 3 months. I could do little more than walk slowly round the coffee table. I took several months to recover. I'm fine now! I take anticoagulants as it left me with atrial fibrillation. I haven't had an episode for almost 2 years. I feel fine. Walking every day.Good luck with your recovery. Be kind to your body and don't overdo it.

Doug5128 profile image
Doug5128

Hi Greg,I had similar with an EF10%. With medication and a pacemaker fitted my EF is now at 48%. At this level I regularly go to the gym, walking (10 miles easily), cycling and swimming.

I just take it easy and slow down on the exercise when feeling rough will the winter lurgy.

Take it easy and you'll be just fine.

HHH2017 profile image
HHH2017

Hi, so sorry to hear of your experience with myocarditis. It sounds like it has been a very stressful time. I had myocarditis 5 years ago. I had 2 heart attacks with it & pericarditis and was hospitalised for 3 weeks and I was 55 at the time so our circumstances are a bit different. However Id really like to reassure you on two fronts, you REALLY will get better. ☑️

It can take time your hear muscle has had a shock and needs some rest to recover so give it time & rest. No rise in tropnin is a very good sign I think you caught it early another ☑️ On the issue of scarring Id also like to reassure you this is rare. I do have scarring after my severe case but most people do not get this so please TRY not to worry about scarring.

The most important to to look after yourself now, don't rush back to work & the gym etc. Give your body time to heal fully. If you pulled any other muscle in the gym you'd rest it before returning your heart needs the same consideration 😊

Look after yourself & be kind to yourself and you I look forward to hearing how you progress - slow & steady 👌🏼♥️ Best of luck

Sadheart69 profile image
Sadheart69

Hi JedG,Sorry you haven't been well.My18 year old daughter has Myocarditis also. She has been told; and everything I have read elsewhere supports this, that she is not to excercise at all for 6 months! This is to enable the heart time to recover. If your doctor is correct and it is Myocarditis I would definitely check with them before going back to the gym .I know my daughter was devastated at the news as she is usually very fit but understands that she could set herself back if she were to excercise before she is fully recovered.

Francesco85 profile image
Francesco85

had myocarditis in 2018 and came back again going for genetic testing - keep being optimistic. 50 % ejection fraction and extensive scarring. No heart attacks. 37 age

HHH2017 profile image
HHH2017 in reply to Francesco85

hi, wondering how you are doing & if you have the results of the genetic testing? My EF is similar to yours and I worry about this and the scarring on my heart too but Im doing ok. Very different to how I was 5yrs ago but Im better than I was!

Francesco85 profile image
Francesco85 in reply to HHH2017

latest MRI shows no inflammation - thank God. I am still waiting to get the appointment for the genetic testing after one year. I keep waiting …. Otherwise doing okay having holidays now and not thinking about it

HHH2017 profile image
HHH2017 in reply to Francesco85

Thats great to hear that you are moving on and no inflamation👌🏼❤️

A year is a looong old wait 😳 hope you hear something soon. Keep making great progress ☺️

OpenMind1 profile image
OpenMind1

Hi JedD.. we must have been going through a similar think at the same time. I'm a fit 46 year old runner and was diagnosed with perimyocarditis, i had raised troponin but all other tests clear. I've been told not to do strenuous exercise for at least 6 weeks, but ferl mostly fine... sometimes when I push it though i have a bought of scary pain... i wirry that I'm over worrying and making a fuss but really don't want to cause any long term problems.. i don't have any scaring.. yet.. so I'm just really trying to tell myself that i am allowed to just rest and recover... I'm walking regularly (not our usual hikes), a but of housework and lots of reading. Be kind to yourself, your heart needs a bit if a rest so give yourself a bit of time.. and it's entirely understandable that your anxious but I'm hoping tine will make me less so. Take care. T

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