Myocarditis - New diagnosis

[AM53]

Hi, I’m a fit healthy 53 year old female, who a week ago was taken into A&E with a query heart attack. Prior to the severe chest pain, I had been noticing a higher heart rate when exercising gently and getting out of breath faster. Thought it was just heartburn getting worse. Spent 4 days in hospital, high Tropinon levels that went up during admission. ECG normal when resting, Echo showing some weakness on left side of heart, angiogram showing healthy arteries, MRI heart showing inflammation of heart muscles. Diagnosis of Myocarditis and all medication stopped ( was on aspirin, clopidogrel, bisprolol and atorvastin). Home now and signed off work for a month, with a follow up heart MRI in 4 months, and Cardiology review in 5 months. Unsure how to manage the constant chest pain, which is there even when sitting still. Any recommendations please? Unsure if anti inflammatory medication makes the condition worse?

[Milkfairy Heart Star]

Hello AM53,

I sorry to read you are still experiencing chest pain.

As well as living with a form of unstable angina I have had myocarditis in the past.

The BHF have some information about myocarditis

bhf.org.uk/informationsuppo...

I also suggest you give the cardiac nurses a call on the BHF helpline.

I would also contact your GP and Cardiology team if you are still in pain so you can be prescribed the appropriate treatment.

There are some other forum members who have experience of living with myocarditis and hopefully they will be along soon to share their experiences with you too.

I hope you feel more at ease soon.

[AM53 in reply to Milkfairy]

Hi Milkfairy, thank you. I am really hoping to chat to others with the same diagnosis. I was told to wait for 2 weeks then contact GP if chest pain continues. Sorry to hear you are having to cope with unstable angina.

[Milkfairy Heart Star in reply to AM53]

Thank you AM53.

I would not wait if you are in pain to contact your GP especially as it can take a little longer to get hold of one these days.

Sometimes healthcare professionals underestimate just how miserable living in pain can be.

My myocarditis calmed down quite quickly but I know there are other people on the forum who have more experience of living with ongoing myocarditis.

[AM53 in reply to Milkfairy]

Hi Milkfairy, I’m actually a mental health nurse and trying to balance my own anxiety on a new diagnosis, my anxiety about my heart being involved, and working out if this pain is normal for early days after diagnosis. I spoke to my GP last week post hospital discharge and she is aware of the plan for review at 2 weeks. If it gets worse, will definitely call the GP earlier, but hoping resting up will make a difference. Thank you for answering, it makes a huge difference when you feel overwhelmed.

[Milkfairy Heart Star in reply to AM53]

Anxiety is something we all have to learn to manage whatever our heart issue.

Uncertainty of encountering a new heart condition in our uncertain times is challenging as they say!

Are you able to access some support for how you are feeling?

It can be difficult for some healthcare professionals to ask for help.

Rest is important as well as pacing your activities.

Recovery can be a process of 2 steps forward one step back.

Perhaps keep a diary of activities and aim gradually to introduce new activities as you feel better however be prepared for the pauses required if you feel unwell.

Heart disease can be exhausting physically and mentally. Be kind to yourself and yes it's okay to rest😊

I forgot to send this link to Cardiomyopathy UK's website.

cardiomyopathy.org/about-ca...

[AM53 in reply to Milkfairy]

Thank you Milkfairy, I’ll speak to my GP about support, but need to go outside my own mental health trust for this to be confidential. I’m struggling with pacing activities as heart rate goes up considerably when washing up or having a shower. So adjusting slowly. Hope you are ok today.

[AM53]

No I have no medication, just advised to take anti-inflammatories.

[Countrygarden]

HiJust come across your post. I’m much the same as yourself. Previously healthy 56yr female, very active never sick. Admitted to A & E with severe chest pains and breathing difficulties beginning of Nov. High troponin levels levels. Tests carried out at my local hospital then transferred for an angiogram and MRI. Arteries fine but MRI showed scarring and damage to muscle. Myocarditis diagnosed. On meds been told for life. I’m currently sat here and still have pain. I cannot walk any distance and get quite breathless. Have read that it takes time and to rest, I’m very worried and anxiety I’m sure doesn’t help. Trying to be patient but it’s difficult. I hope you feel better soon.

[AM53 in reply to Countrygarden]

Hi Countrygarden, thank you for your reply. I have no scarring thankfully, just inflammation and fluid and mild impairment. No medication at all for me, just normal pain relief. I get out of breath walking and doing normal activities, and pain still there, but am resting up. I’ve been signed off for 4 weeks, and then got 2 weeks annual leave, so back to work in 4 weeks. Sorry to hear that you are still struggling, the timeline for recovery seems to be different for everyone. Do you have a follow up? I’m being booked for a cardiac MRI in 4 months, to review the recovery. Hope you feel better soon too.

[Aceman765]

Hello AMF53. I also joined the 'acute myocarditis club' 4 weeks ago. I am a 22 year old male and like you, fit and healthy. I am prescribed ibuprofen but I have also read that ibuprofen can make the condition worse. Nonetheless I am still taking one 400mg tablet before bed at night. Completely empathise with you regarding the chest pain. I only experience chest tightness and pressure if I do a walk or anything similar, so avoiding walking at the moment. I have been doing the 'Managing Anxiety' course on the Headspace app to help keep some mental clarity. It also attempts to teach how to reorientate your relationship with thoughts and feelings. Might be worth a try! Although I didn't think I was susceptible to panic attacks, I had an 'episode' on NYE resulting in an A&E visit. Rapid heart rate >140bpm, tight chest, sweating, full body shakes and hot flushes. Not sure if it was a panic attack or arrhythmia - anyhow, that is what prompted me to start the course. Wishing you all the best with your recovery!

[AM53 in reply to Aceman765]

Hi Aceman, thank you for your reply. Do you have any idea what caused yours? Having chest pain when I rest still, but not getting worse. Hope you don’t have any more events. It’s a tough one for everyone to process. I’m ok now as not getting short of breath anymore. Might get a little more anxious when I go back to work in 4 weeks, as I am a nurse, so no let up. I’ve also seen some advice not to take anti inflammatory medication but other places it says you should, my GP told me to continue with Naproxen ( already in this for hip pain) and co-codamol. Guess will see in April 2021 when I have a follow up Cardiac MRI. Wishing you lots of luck with your recovery too. It’s great to chat to people also newly on this diagnosis pathway.

[Aceman765 in reply to AM53]

Fantastic you're seeing some progress in the recovery, hopefully the rest of your symptoms alleviate soon! Interestingly enough, the cardiologist believes it's from COVID. My whole university house tested positive early November. I decided not to get a test as I think its likely I would have had it too. Therefore cannot be sure but a high probability. Loads of evidence online that COVID goes for the heart too. I think all the statistics will come out in a few years time. Glad to hear your MRI is still scheduled for April - mine is April too. Hoping they don't get moved!