Ongoing myopericarditis

[OpenMind1]

Hi everyone, thank you dor your ongoing supportive posts, I've not posted for a while but read the feed everyday. I'm hoping for your thoughts/ experiences related to me situation.

I was diagnosed with myopericarditis in January (my profile has a blow by blow account so i won't bore you here). I'm now 9 months down the line and It's still not resolved. I don't feel nearly as poorly as many of you but my life, travel plans and mental health are taking a real toll. I am almost constantly aware of my heart not being happy through varying degrees of chest pressure and soreness whichare worse at the end of the day, do get really tired (though that's not entirely unusual for me), my troponin remains slightly elevated 30's and increased a little on a blood test taken at a and e a couple of weeks ago. Scans 4 months ago show slightly decreased LV function and inflammation, i also have a pretty low pulse..min 40's and low 30s at night.

I'm a fit runner(well was), slim, 47 and I've done no exercise since my diagnosis, barely even drink wine any more . I run my own business delivering mental health training online or in person but have plenty of down time... but I'm a fairly active person, walking to get shopping everyday, housework, gardening etc... so here's my current dilemma. Should i take resting to the next level?.. might it help get my heart back on track if i properly rest up for a few months? Am i risking things not resolving or causing permanent damage if I keep on with my busyish life?

I don't know how others feel but I'm constantly flipping from thinking I'm making a big fuss about this, It's not serious and I should get on to.. omg could this kill me, will I wake up tomorrow... anyway... any thoughts, advice would be sooo welcome. Thank you xx

[Captain_Birdseye]

Hey,

I'd hoped that you'd have been feeling better by now, I'm sorry you're still going through this.

Have you tried to self refer for cardiac rehab? My local one took me on to build up my confidence exercising again and I've been put on another supportive programme (slow start due to flare up).

If not, maybe try a cardiac youtube exercise and see how you feel - give it a few hours to see if the pain is triggered.

It's so frustrating, you feel life is on hold... I feel worse in the evening and ok in the morning... during bad spells it's difficult to imagine it'll ever go... I keep getting told that it will eventually go... but it's certainly persistent!

[OpenMind1 in reply to Captain_Birdseye]

Oh I always appreciate your posts, thank you. I'd not thought cardiac rehab was a thing for the likes of us.. but i think that's a really good idea in terms of getting support on how much exertion is good and helping me not worry so much.So does it come and go for you? How long have you been living with it? Do you know if you've had/ have elevated Troponin?... sorry 20 questions there 😅

Thanks again for your ongoing support.

[Captain_Birdseye in reply to OpenMind1]

My troponin hasn't really been anything to worry about, it's stayed detectable but low apparently. I was diagnosed July last year, so 14 months now.

Cardiac rehab is more for those who have had heart attacks, but I spoke to the lady running ours and she was happy to bring me in just to give me the confidence to move again. She checked in with my cardiologist for me as well. The exercises were all manageable and I didn't get pains from them... I've paused again now as I'm getting a flare up, but I think it's the heat tbh.

It does come and go with me, I get chest and/or arm pain everyday, but I stopped taking painkillers for a good few weeks recently as it was manageable... back on them now though. My cardiologist has said I'm not a straightforward case and I'm waiting on results checking for autoimmune causes.

[OpenMind1 in reply to Captain_Birdseye]

That's really interesting... I've wondered whether there's an autoimmune issue for me. I'm so sorry this is an ongoing issue for you, please do keep us posted.

I don't tend to take painkillers as my pain, though noticeable is manageable and i guess in a way i feel like the pains reminding me that not all's well and don't over do it... but maybe i should think about it.. it might relieve some anxiety?

Take care of yourself and thank you again. X

[theonethatgotaway1]

I understand you completely. The worry and aniexity surrounding having a heart problem. The thoughts of 'is this it' with every pain, sensation,.skipped beat and every night of going to sleep thinking this may be the last time. It's crazy. My world turned upside down at the age of 35 in 2019 just as the pandemic was kicking off. Suspected heart attack with tropin levels at 2500>!! Is that even possible? Well.says so on my discharge papers. Going from a fit man who trained 5x per week at the gym and worked 80 hours a week to being in AnE grasping for life. Left with severe heart failure. In icu for 10 days. Things only turned around after I cried and prayed for more time. Begged.

Fast forward several years of constant aniexity, meds, daily chest pains, trips to AnE, 111 calls, no known cause for all of this. Still here.

Anyways you get the drift. It sucks big time to have a heart problem. Any other organ, no worries. Broken leg, get it fixed. Kidney, replace. Heart, not so good. The heart repairs at a snails pace compared to the rest of the body.

So do we rest or so we train it...

I have always found that exercise is the key. Before all of this exercise kept symptoms at bay. But obviously now with a serious heart condition, I have all the worries about training. With severe heart failure and a huge scar on the heart, it's finding the balance between rest and exercise. Your unlikely to cause permanent damage as such as long as you listen to your body and your heart. It can happen though. People pop it all the time. You just have to proceed with caution. Rest when you need to. Look after number 1.

[OpenMind1 in reply to theonethatgotaway1]

Oh wow, that's quite a story, I'm so, so sorry to hear what you've been through. Very similar experiences accept my Trop was in the 300's.. not 1000's... how long did you leave things before building up your exercise again. I am really lucky to not have any scaring and minimal LV reduction.. but I'm so worried that if my trop's not going down and i keep getting pain i could cause longer term damage.

Thank you so much for taking the time to respond ... it really does help to hear from people who have similar thoughts and feelings about this world we find ourselves in. T

[theonethatgotaway1 in reply to OpenMind1]

Well In the 10 days in icu I couldn't walk 5m. When I got home I couldn't walk to the end of the garden. It took some serious time tbh. I managed a trip to the shop about 50m away after a week. It was after the cadioversion and once the meds started to kick in, probably months till I did any longer walking.

Actually even after 3 years, I haven't returned to any real exercise like I used to do before. Gym. Swimming etc. These days it's mostly walking and exercise bands and light weights at best.

You really have to take each day as it comes. Some days I will feel like I have ran a marathon or full body workout... I am that shattered! I used to sleep 12 hours per day easily. So it's really just getting the right balance of rest and exercise.

It really is tough to live with heart condition. I do find you get plenty of info on here and probably more than you do from the cardiac nurses who are unfortunately overwhelmed themselves and hard to pin point answers.

[OpenMind1 in reply to theonethatgotaway1]

Thank you for sharing your experience. My challenge is that I feel able to function fairly normally... luckily... despite constant discomfort whichbis manageable... so my body's not stopping me.. but feels like its constantly warning me not to forget things aren't normal. I rrqlly hope you keep making progress and get to a point you feel allows you the quality of life you'd like. Thank you again. T

[Helly75]

This post makes me feel so sad , such a horrible life altering condition. I was never right after my first brush with myocarditis & the second one 3 years ago has really done a number on me ,my heart still messes about all the time ,rate all over the place & still get a lot of pain but all tests are normal . My only advice is to rest a bit more than you are now & try to stay positive ( I know that's hard) it can take a long time to recover fully ,I wish you the very best xx

[OpenMind1 in reply to Helly75]

Oh Helly I'm so sorry this has been an ongoing issue for you. Do you have any idea what has brought on your second bought? I so struggle with whether I'm making a fuss and should just get on and ignore the discomfort and tiredness.. but my biggest fear is my actions causing more major longer term issues. It's so odd.. despite what I'm experiencing and my raised Troponin (although like you my other tests are fairly normal) I read other peoples experiences and don't feel it relates to me.. like I'm still in denial this is happening. I can't imagine how you get on and feel able to be optimistic about things if you keep getting battered by this. Thank you soooo much for taking the time to message. X

[Helly75 in reply to OpenMind1]

My situation is just plain weird ! I was just very very unlucky I managed to get long term issues ,some sort of post viral illness but no real answers as to why ,I have a condition called pots & now an autoimmune disease . I was fit ,healthy ,working full time, running after 3 children & so on ,now I just go from housebound to bedbound, spent yesterday in a&e for the hundredth time lol you couldn't make this stuff up! BUT that's just my situation with a hefty dose of pure bad luck. Most people with myocarditis recover fully & can go back to normal but unfortunately there's no solid answer as to how long it could take ,all I can say is listen to your body ,if it's telling you to stop then stop xx

[Catkin-blake]

your raised troponin means your heart is still inflamed so you real do need to rest with no heavy lifting of shopping, housework etc anything that puts a strain on your chest and heart That was what I was to,d. some other advice I was given as I was recovering monitor your heart rate and was don’t let your heart rate go above 100 if you have a gentle walk, and v slowly increase the distance. Myo can take an awful long time to recover from. Your heart is a muscle at the end of the day, and how would you treat a torn leg muscle … rest rest rest, and that takes a long time to recover from totally. Hard, I know and it’s very scary, but Keep trying to stay positive

[OpenMind1 in reply to Catkin-blake]

That is so, so helpful, it's ridiculous but i almost feel like I need permission to rest or indeed be told I must ... so i don't just feel like I'm making a fuss. Thank you so much and look after yourself. X

[Catkin-blake in reply to OpenMind1]

Yes I know what you mean. I found it very hard with my 3 dogs and horse leaving my OH to do it all along with the looking after me. I tried to do to much and ended up back in A&e twice so lesson learnt for me!

[jayjay10000]

Hi there it's very interesting reading all your posts. Since I been told by our local hospital that I have a Arota root dilation of 4cm in May this year iam finding life really difficult at the moment, especially with Anxiety and feeling overwhelmed and Anxious everyday. Iam getting alot of chest pressure and also experiencing jelly legs when iam out about doing shopping or some kind of eron. I can not get to sleep probably because everytime I try to lay down my breathing is shallow. Iam also experiencing chest suddring during the day. Life has been extremely difficult and stressful, I could cry most days because I don't understand why this has happened to me. I use to do alot of DIY around the house, go for long walks, but this is pushing my blood pressure though the roof and it takes all day to get it back down. For example last December 2022 I could lift 15 bags of coal, each bag 25kg, from the car though the house and into the coal bunker. Now I can't even lift one without starting to feel unwell. I have worked out I can do around 17 mins of mid activity before my blood pressure starts to raise drastically. I can not even do long car journeys anymore. I drive for about an hour before I have to take at least 30mins rest before carrying on, it's a complete nightmare. Iam also starting to smell and taste smoke and I don't know why.I thought I was all alone on this heart health issues that I have and iam lucky to find great people like yourselves who understands what iam going through. When I tell certain members of my family about feeling unwell,they just tell me stop wine in like a b##ch you starting to sound like Harry. Anyways take good care of yourselves, hope everything will work out in the end for yous.

[OpenMind1 in reply to jayjay10000]

Oh my goodness that sounds utterly terrible. Are you being looked after bya cardiology department ? I think one of the most difficult things is feeling like you've been abandoned as getting to see a consultant is so difficult leaving us to try to work things out for ourselves, not good for anxiety. I resorted to paying to speak to a private consultant which did help reassure me but things feel ever changing so could do with speaking to him again I'm sorry you're family arn't supportive either. Glad you've found this group, they're fab.Take care of yourself as much as you can. T

[jayjay10000]

Thankyou so much for replying to my post. I have only seen SDEC ( same day emergency care ) three times at the hospital so far about my heart. I had a CT scan done in June where they put iodine through your vains to see if there were any blockages and to see if my heart was still in tact. The hospital said everything looks good for now. Iam due my echo this month because it's been 6months since the last echo on March 7 2023. I have no follow up appointment so far, like you said before I have been abandoned. I have found out that you can pay for a echo yourself the price is around £250 and they forward your results to your doctors,but I would not know how to organise that kind of thing. Take care always.

[LilySav]

I can understand your feelings of up and down. I inadvertently found out (saw the words on his prescription) that my partner has Chronic rheumatic myopericarditis. No-one had ever mentioned this! He had Myocarditis and pericarditis 7 years ago but made a good recovery. Recently his breathing has become problematic and he has fluid retention, so back and forth to the GP to try and find out what's going on. Cardiology department have pretty much 'signed him off' after echo, xrays, blood tests etc and GP doesn't seem to be overly worried ...not half as much as I am.

Her focus is on his weightloss, so I do wonder how much our covid inactivity period and sedentary work is impacting on things.

When you next see your GP or cardiologist (or similar), tell them how much of an impact this is having on you mentally.

I wish our GP's thought a bit more about what they do and don't tell us. It woukd save them so much time in the long run.