myocarditis chest pain

[Biggles33]

hi there,

I am interested to know all those fellow myocarditis sufferers as to what your chest pain actually felt like?

I’m asking because I’ve still not got confirmation of myo as I’m awaiting a cardiac mri to confirm the diagnosis. However I am having a lot of symptoms of pots and this is what my doctor thinks it might be.

My chest pain very much feels like a squeezing sensation under left breast and this has been pretty much consistent throughout. I also get a heaviness at times and pain on the right hand side but this come and goes. So yes I’m basically intrigued to know from others what the pain was actually like? where? and how bad?

Many thanks. This forum has been a massive help and reassurance to whilst like everyone you wait for your next appointment/test. X

[Helly75]

My pain always feels like squeezing & I often describe it like a bruised feeling . I remember telling my dr I had to lift my left breast away from the chest wall & he said he's heard that a few times from female patients, I thought I'd went mad! I also live with pots symptoms, very very hard to tolerate, hope you get the mri quickly xx

[Biggles33 in reply to Helly75]

oh that’s interesting, yes that’s definitely sounds like me, thank you. I think I definitely have pots also, I’m now on beta blockers which has taken the edge off but still feel palpitations all the time. X

[Captain_Birdseye]

Hi Biggles,

My experience is similar - a squeezing pain, sometimes a dull ache, sometimes a bit sharper. When it's bad I can feel it on my shoulder blade and down my left arm. Sometimes it's positional.

If you've not tried already - I've found a gel heat pad can give some relief.

I occasionally get a feeling of arrhythmia but have never had it picked up on ecg.

Having the mother of all flare ups right now, I've hardly slept because of the pain for a few days...

[Biggles33 in reply to Captain_Birdseye]

evening captain birdseye,

I am sorry to hear you’re having a bad flare up. This seems to be a long term thing. My cardiologist said it could be 6-9 months before it resolves, although I fear this is much longer from reading peoples posts.

I too feel like i can feel arrhythmia at times but never picked up on ecg. I find the pain is worse on a night (some nights I don’t sleep at all) and it radiates down my arms along with a tingling sensation. My doctor is also convinced I have pots as well, which I agree as I have all the typical pots symptoms. I’m so down to be honest and I just thinking when will I get better!!! I’m a month into all this and I fear I am just starting out. X

[Captain_Birdseye in reply to Biggles33]

Completely understand feeling down about it all, your heart and mind have had a fright, you're feeling things you've never felt before, follow up support feels patchy sometimes and the Internet gives conflicting information... anxiety and cardiac events seem to go hand in hand too.

But it does get better, until last week I'd have told you that I saw great improvement! Some recover in a few weeks, advice is normally 3-6months, although we're hearing more from folks that seem to have it a little longer. It is early days for you just now, but hopefully the worst is behind you and you start seeing recovery soon!

[Biggles33 in reply to Captain_Birdseye]

thank you. During the “rest” period were you housebound doing nothing or still going about your daily business and work etc? I’m confused as to how much I should or should not be doing? At the moment I’m literally laid on sofa every day. X

[Captain_Birdseye in reply to Biggles33]

I think it'll come down to the individual... but I didn't take time off properly and it delayed my recovery... I had to keep working during a very stressful time at work and I ended up back in hospital. Then I took about 6 weeks off and then was part time for a few months, I only went back full time a couple of months ago.

Everything else ground to a halt though... was reduced to slow, short walks, no lifting. I did spend a fair bit of time sitting around feeling sorry for myself but had to pull myself out of it.

[Catkin-blake]

I had very similar pains, a heavy sensation radiating up through my sternum in to my right side and also my upper back and right side. When I lent forward , reached up any movement of my upper body could make it worse, a real pressure with sharp pains. I also got discomfort under my left ribs, with palpitations. The other thing I had as I had perimyo was a vibrating sensation whenever I took deep breaths, the peri rub. .to be honest now I’m still getting some palpitation s and a little discomfort after I have done too much, though my cardiologist says my my has resolved but left me with residual complications, mvd . sleep wise I still sleep on raised pillows, and on my back. It is very scary waking up at night in pain, or getting very sharp pains, I went back to a&e a couple of times to be checked. Best thing I got was a watch which could take my blood sat levels, a very simplistic ecg, my t wave was originally inverted due to a heart event from myo, and I could actually see it reverting to positive over a number of weeks, and monitored my heart rate, it just all helped reassure me things were getting better. Also monitored how hard it was working, when walking, I was told to try to keep it under 100 beats during the months of rest. .The gold star diagnosis for myo is a cardiac mri, otherwise it all seems a bit guess work, you have a ultra sound which show enlargement , X-rays May show peri, angios’s show no blockage, and bloods have raised troponins which leads them to poss myo to be confirmed by mri. It feels sometimes you are just left to get on with it when diagnosised. When they thought I had a ha I was enrolled on cardiac rehab , apptmt etc then when it was decide it was myo I was just sent home to rest and a mri in 3 months to see the damage if any, still waiting for results, and then told to exercise but no guidance given on how to start. . This community has been invaluable to me

[Biggles33 in reply to Catkin-blake]

Morning,

Thank you for sharing. So far all my bloods, ecg, echo and x Ray have been normal, but due to symptoms they still thinks it’s myo, hence awaiting mri. I think it’s the pots that is making me feel the worst and my heart rate was going really high, although the beta blockers have now brought this down. Can I ask how long you rested for? And does this mean complete bed rest or still going about your daily business but without exercise? The information seems to be conflicting as my doctor was pretty much like try and get on with your life, but from what I’ve read on here peoples have rested for months? I’m not sure what’s pushing it too much? At the moment I feel so poorly anyway I’m literally laid on sofa most of the time, although I’m not sure if I should try to be pushing myself to go for gentle walks etc. x

[Catkin-blake in reply to Biggles33]

Hi, good that tests so far are normal . mine all showed abnormalities as first I knew about my peri-myo was when I had a heart event swimming so damaging my heart a little. I was told no exercise, rest for 3 months, the settee became my best friend, no house work no lifting, I wasn't even allowed to groom my horse or dogs but I could do very gentle walks with my dogs, but not to run, hold leads anything that would put a stress on my heart, and to be honest I couldn't do much walking anyway, no driving as it caused pains, and going as a passenger caused discomfort in my chest ( the movement in the car). I felt fatigued , in lots of pain, just had to rest, and when I did over do it I ended up in A& E been checked out. Even now in recovery I have off days when ive overdone it so have to rest. At the end of the day your heart is just a muscle, albeit one we really rely on , so just think if you had torn a leg muscle you would rest it ( hard with your heart) and then have good days and bad days on the road to recovery. But it really is rest, the beta blockers will help slow your heart and rest it ( the advice I was given about not going above 100bpm was really useful, as a gauge) . You will find eventually that you are doing a little more as time goes by, and the pains lessen, its a long slow road to recovery, 4 months on I've now started cycling, walking my dogs and just venturing out to swim, but I still dont do heavy lifting or anything that would strain my chest and heart. It has left me with MVD so now use a spray but even that is improving. Hope my sharing lets you know that you will get there. Other advice Don't Dr google , as it can really frighten and scare you

[Worlebury]

Hi,yes,that sounds like me as well. ,I get a dull / hot ache which increases ,feels like bruising. I was diagnosed in June 2022,and it's been a slow recovery. I now feel able to do more,although hills,and inclines ,lifting,and carrying weight is still a challenge I have learnt to 'read' my body and know when I need to chill and stop. Pacing myself has been so important, think tortoise and hare!! You will get there, like you this forum has helped. Hugs