Myocarditis: Hi I am 49 years old mum... - British Heart Fou...

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Myocarditis

Eddie1969
Eddie1969

Hi I am 49 years old mum how was active, running and the gym and then i was diagnosed with myocarditis back on 27th July. I had sudden indigestion like high chest pain, on the thursday night took something for it and went to bed. Had a bad night woke up with pain down my left arm and side and felt really unwell. Still had chest pain, called 111, ambulance arrived, did an ecg but that was ok, said to go to hospital for blood test, but I said no I would just rest. Had another bad night, went to A & E the next day and my tropion reading was high, and odd ecg, so stayed in over night. Told I had premyocarditis. Left with pain killers and crochrine. Spoke with my GP and was referred for an echo gram. This has come back fine, but I still have a pain in my left side around my chest. This comes and goes but I know it is there. Is this normal after diagnosis and is it just part of the healing process.

31 Replies
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Hopefully someone will be along soon to help you answer your question. Good luck and welcome x

Hi Eddie1969,

I am similar to you as I have both Myocarditis (inflammation of the heart muscle) and Pericarditis (inflammation of the membrane that surrounds the heart muscle). When you have both of these it is sometimes written as Myo/Pericarditis. I have had this fairly consistently since December 2016 and suffer from chest pain on the vast majority of days. I have been trying many different things to resolve this problem. In a lot of cases people are first prescribed NSAIDs such as Ibuprofen and Colchicine along with painkillers like paracetamol and pills to protect the stomach such as Lanzoprazole. Sometimes this resolves the issue but in many cases it doesn't so patients are then tried on Corticosteroids for a short period of time which in my case managed to get rid of my chest pain while I was on the higher doses but then returned while I was tapering off them. As mines has kept persisting for almost three years now I will be discussing with my cardiologist the next type of treatment I can start. I have an idea of what I may be put onto next but will see what my cardiologist thinks. I hope you manage to make a full recovery.

Eddie1969
Eddie1969 in reply to v42230

Hi thank you for your reply. I think I need to give myself more time to see how things go as I am only a few months in then . But thanks anyway.

v42230
v42230 in reply to Eddie1969

No problem at all.

Maya23
Maya23 in reply to v42230

Hi I just replied to your post but then I found this thread and found it very helpful to know other people are going through something similar to me. My heart echo has always been normal with good function. But I still get chest pains, it’s been nearly 4 months now. Did you have CT or MRI? I’m due those next.

v42230
v42230 in reply to Maya23

Hi Maya23,

I've had two MRI's, quite a few echocardiograms, several blood tests and ECGs. Everything was normal apart from elevated levels of troponin detected from blood test and areas of inflammation seen on MRI. My only symptom really has been varying levels of persistent chest pain. I'm unable to do most exercises that raise my heart rate too which is frustrating as I was once very active. I'm on a waiting list for a CT scan so will see what comes from that.

Maya23
Maya23 in reply to v42230

It’s frustrating not to be able to get on with normal activities due to chest pain isn’t it?

I’m having my CT angiogram & cardiac cor artery calcium scoring today. Will let you know how it goes! Though I probably won’t have results today. X

v42230
v42230 in reply to Maya23

It really is frustrating especially if you were previously very active. Good luck with your tests! I hope they go well and please let us know how you get on. It's always good to read people's stories because someone may identify something that helps them significantly which may as a result help others too.

Maya23
Maya23 in reply to v42230

I’m currently laying on a trolly outside CT scan room! They gave me beta blockers with The drug that opens up the blood vessels as well as the dye and I think my body just felt overwhelmed and I had a funny turn at the end .. I felt super sleepy and confused for about 5 minutes they couldn’t move me.

MaguireB
MaguireB in reply to v42230

Hi I have had the same treatment path and condition as you I am trying to reduce my steroids but my chest pains come back I have had this for two months now......some people have said my critical illness insurance may cover this condition have you had any luck?

Hi I have also had both Myocarditis and pericarditis. It sounds like you may have caught the virus in its early stages which is good but still the symptoms are not pleasant. REST is probably the best advice I can give you. For you its possibly like recovering after a bad flu, your body will be weakened by what your heart has experienced and rest and time are what it needs. Try your best not to over do it as you don’t want a set back. Good luck in your recovery.

Eddie1969
Eddie1969 in reply to HHH2017

Hi thank you for you reply. Just helps hearing from other people. Thanks again.

Hi Eddie1969. I am a similar age to you, with 2 grown up children and a baby grandson and was diagnosed back in early June and spent a week in hospital. I was discharged to the care of my GP with no follow up from cardiologist and never received treatment.

At the time I was given various accounts of how long it would take me to recover.

It seems everyone’s symptoms and recovery times are very different. Plus it’s a very slow process! A lot of the time I’m fine and lead a relatively normal life but then sometimes suffer bouts of tiredness which makes me feel ‘off’. Unfortunately these times tends to trigger bad anxiety with thoughts that I won’t ever be right again and how am I going to manage full time work again ( I’m currently working part time as part of a phased return). It isn’t always helpful to me personally to be on these sites when I read things like people who have been suffering for years. These times also muddy the waters with my symptoms too and I’m unsure what is anxiety related and what is my heart issue.

I have found there to be very little support and knowledge for the condition but did find it useful to speak on the phone to a lovely nurse at the BHF tel:0300-330-3322. Good luck!

Eddie1969
Eddie1969 in reply to ADAT73

Hi thank you for replying, I also spoke to a heart foundation nurse and she was lovely and so very helpful and I spoke to a nurse with occupational health at work, and it was agreed for me to work flexible. Take care.

My myocarditis experience. I’m 44 (was healthy and reasonably fit). Myocarditis in October 2018 (very similar to how you describe). Prescribed colchicine. MRI scan in November 2018 confirmed myocarditis but also normal heart function. Assumed virus induced but no evidence of infection. Chest pains and shortness of breath continued for about 6 weeks (but returned each time I came off colchicine). I had a repeat myocarditis in August 2019. Back on colchicine (double dose) and cardiologist referred me to a rheumatologist for further tests associated with auto immune system. Awaiting test results and PET scan results at the moment. From my reading and experience it is normal to have pains afterwards and the prognosis for people with myocarditis varies considerably. Prognosis tends to be very dependent on whether the myocarditis has led to reduced heart function. I assume you had an echo cardio gram which confirmed heart function okay? The main thing they check is heart ejection fraction. In which case that’s really good news. For the vast majority of people, myocarditis is a one off and you will recover fully. However, I think it’s important that you have a follow up with a cardiologist and are under their care until you’re back to normal. If you’re not, I would push for that through your GP. You could also push for an MRI which is the best way to confirm myocarditis, confirm whether the inflammation has subsided and whether there has been any scarring/permanent damage to heart. Overall I wish you best of luck in your recovery. Do let us know how you get on.

Just reread your comment and noticed you’ve had an echo - good news that’s come back okay.

Eddie1969
Eddie1969 in reply to Heartandy

Yes the results of the echo-gram was ok. So after reading all the replies , I think I need to listen to my body and take things slow. Thanks

Hi

I had left ventricle systolic heart failure caused by myocarditis in June. I still have extremely tight chest and pains but each time ive been checked the ecg/xray/bloods have been normal. I was told its the muscle healing but it still makes me feel very unwell. Like you I dont want to be bothering doctors all the time but it is worrying and when we dont know whats going on in our own bodies. You are not alone and I hope that you fully recover soon

Eddie1969
Eddie1969 in reply to MyoPurple

Thank you so much

v42230
v42230 in reply to MyoPurple

Myopurple,

Can you tell me which tests showed abnormalities with your heart for you to be diagnosed with left ventricle systolic heart failure? Was your ejection fraction low or were there other indicators to help with the diagnosis of left ventricle systolic heart failure?

MyoPurple
MyoPurple in reply to v42230

My paperwork actually says dilated LV. Global mildly impaired systolic function..

Cardiologist said systolic 'heart failure' probably caused by myocarditis.

MyoPurple
MyoPurple in reply to v42230

Had an angiogram and echocardiogram

Katydl
Katydl in reply to MyoPurple

I think with the symptoms you are experiencing, you should be speaking to the Doctors, It’s their area of expertise.

If we feel that we are bothering them, what’s the use of them being there?

Please remember that we, the patients are the very nature of NHS business and not the other way around, they get paid phenomenal amounts yearly because they are experts.

I do feel they know a lot but not everything, that’s why patients may feel they are bothering the doctor, especially as what you are feeling is real.

It just seems like no one really knows what to do next, when symptoms persist like this even the Doctors.

Hi Eddie.

I was diagnosed with myocarditis and pericarditis in July.

Normal ECG but high troponin.

I had chest pain, pressure in my chest, dead arm, pain in my shoulder and neck.

The pain comes and goes still, sometimes it's terrible. I was sent away with pain relief, low dose asprin, beta blockers and ibuprofen.

I've had an MRI and I'm waiting to see cardiologist in October.

I think the pain you're describing is consistent with myocarditis.

My best advice is rest!

I've been trying to eat more anti inflammatory foods, I don't know if it's really helping but it makes me feel like I'm doing something.

All the best.

Hi Eddie

I’m 47 so similar age to you, though I have a background of Lupus (currently inactive) and Fibromyalgia, but I was relatively well when on 1st June I suddenly got similar symptoms to you: mine felt like a strange cold burning tingling sensation in my chest with it spreading up into my throat and jaw and down my left arm.

Husband wanted to call ambulance but I wouldn’t let him but agreed to go to local walk in centre, who on arrival immediately called an ambulance and was taken to hospital. ECG looked normal but Troponan levels doubling every hour. Was told ‘heart attack’ and put on cardiac unit with old men!

Next day changed diagnosis to Pericarditis. Sent home with instructions to take pain killers. Felt rubbish: tired, chest pains, breathless, unable to do much of anything.

I seem to improve for a bit then the symptoms return just like before, every month at the same point in my cycle (usually around day 8) so been back into hospital a few times, but these times Troponan levels normal. Still waiting for my CT and MRI scans, but all heart echos show normal function.

Lately I got new chest pain (difference is it’s mostly in my chest wall and related to Fibromyalgia flaring up) and now looking at diagnosis of Costochondritis too.

It’s been a terrible few months! Still having to rest a lot and I can’t work very much.

Recently my GP has suggested beta-blockers because my heart rate is often high (tachycardic) and it may be triggered by anxiety about it all. I’m thinking of taking them because I also get heart palpitations. Have you been offered these?

Eddie1969
Eddie1969 in reply to Maya23

Hi no I have just been told to go back to my normal activities but feeling a bit cautious, and still having these odd chest pains. Tske care of yourself

Maya23
Maya23 in reply to Eddie1969

It’s rather strange isn’t it that the pain continues for so long? Mine gets worse again after normal activities and also with hormone cycle.

How are you now. Had myocarditis early January and prescribed colchicine 3 months. 3 weeks ago back in hospital with diagnosis of AF. Last night pain like severe indigestion. Better now. Waiting for MRI but naturally all my appointments on hold at present because of coronavirus. Guess I'm a bit of a worrier!

Hi sorry for slow reply. I’m a lot better now thank you. Was on Colchicine for 3 months. Stopped taking it in September. Had one minor episode in November but didn’t end up seeing a doctor (a&e was far too busy!). Had CT angiogram, MRI, heart echo x3 and all results are good. No scarring. I’m still a bit scared every time I feel any twinges in my chest, but they don’t happen hardly at all now.

Glad you seem to have recovered. I was back in hospital and diagnosed with arterial fibrillation so now on blood thinners. Felt good last few weeks. Did a little gardening three days ago and now have chest discomfort. Don t know how to tell if it's arterial fibrillation, myocarditis back or chest sprain! Stopped colchicine about ten days ago. Don't like to call gp in case they mention hospital.

Think you need to talk to a doctor about it x

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