Myocarditis - a year later & developing symptoms but test results ok

Heart health and blood vessels
1

Hi there

In February 2015 I ended up in hospital with Myocarditis. On the Sunday evening I started to get a heavy pressure across my chest which then developed into really sharp pains. At that point I had a really hot flush and thought I was going to be sick. Thinking it was bad indigestion, I took some painkillers and Rennies and tried to get some sleep. The next morning I still had the pressure and a squeezing feeling in my arm so I went to A&E just to be on the safe side.

My EKG, chest X-ray and blood pressure were all fine but my troponin levels were extremely elevated. They transferred my to another hospital where I stayed for a week and after an all clear angiogram, I was diagnosed with Myocarditis. I had an MRI which showed the inflammation was mainly around the heart pump function which was down to 65% function. I took rampiril for about 6 weeks to help but had to stop it as it brought my blood pressure too low and gave me an irritating cough.

Since then I've been back to normal and feeling fine until last week. The pressure started again in my chest, my arm, a headache and sometimes I feel like someone is squeezing my wrists. I got checked out at the hospital and all of my tests came back fine. The doctor thinks I'm just worried it will return so the pain is just anxiety!

I know my own body and there's definitely something not quite right. I've been fine until now and the only think I can think I've done differently is exercising harder than usual in the lead up to my wedding.

Has anyone had any problems with exercising after having myocarditis?

It would be good to hear from you if you have.

Thanks

Jenna

2

YEs, I have had the same problem.  I was in the hospital in March of 2015, diagnosted with Myocarditis.  It took months to start feeling back to normal.  Then in October it started again.  I went through all the tests and everything came back fine.  But like you, I know my body and I know something still isn't right.  But tests are not coming up with anything.  I feel ok now, though I get shortness of breathe and extreme fatigue especially after working out.  My doctor also suggested that it's anxiety.  He is sending me for more blood work this month and is looking at a few things other doctors haven't.  

Would like to know how things go for you.

Helen

3

Hi Helen

It's so frustrating isn't it? Good luck with your tests, I hope you get to the bottom of it. Will you let me know how you get on?

I'm not sure whether to go to the doctors or not. I don't know what else they can tell me really so at the moment I'm taking strong ibuprofen and hoping (fingers crossed) it just goes away. The thing I'm most worried about is whether I should continue to exercise but surely that's got to be good for you.

I wonder if the scarring on the heart has an impact on physical activity? I never thought to ask at the time... I was just pleased to be out of the hospital smile

I'll keep you posted with me and let you know how I get on.

Good luck!

Jenna

4

It is frustrating, I just want to be back to normal.  My doctor said working out is good, but he has me doing low impact consistent workouts. Nothing to get the heart rate up to much, more of a consistent increase and then stay steady.  It's the breathing that bothers me the most.  I will be fine for days or even weeks then it starts again and I can't pin point what is causing it. 

I will let you know of any new updates.

Helen

 

5

Jenna - My husband suffers from Heart Failure, so i know a little about heart problems, and I ask questions, I write them down so I don't forget, and the Dr's have been very patient with me and husband, and have explained, aslo have been reading lots of books from the library about heart failure.

High Tropinin, from my understanding that comes about because your have damaged your heart muscle, you only get one of those, and there is very small chance of a replacement.

Rampiril, thats to lower your blood pressure, just like if you strained a muscle in your leg, what do they tell you, but put your leg up and rest that muscle for a few days, bit hard when its your heart, but they can help by not making your heart work so hard to pump that blood around your body, if it makes you cough they should be changing to another medication but not stopping, unless the Dr says so, or thats what we were told.

Exercising - I would not be doing any really vigirous exercise, gentle but persistant walks, you leg muscles act as another heart, to help pump that blood around your body, my husbands heart function got down to 23%, not expected to survive his heart was not happy, but he started walking, first to our own letter box, about 25 yards, then the neighbour letter box, he built that up to 3 5 miles aver about 18 months, specialist heart Dr delighted with the amount of walking he could do, heart function came back to 40+%, then started dropping again, down to 35%, took some time, but they finally figured out that his electrical activity in his heart was failing, now has pacemaker and defib 2 weeks ago. Given him back some quality of life, started walking agin, firstly to corner of street, 100 yards, and today to corner store, about 400 yards and return, said he feels good.

I belive from watching my hisband, just the slightlest cold, virus and his heart starts getting weakness again, he really has to watch himself, flu for instance would probably make him very unwell to needing to be in hospital, for monitoring. We have flu injections as a precaution.

Achey wrists - I bet they have you on a colesterol medication, husband also gets wrist pains, aches, weird feelings, known side effect of colestreol meidication, not necassary in your wrists, can affect other bones as well.