Hello everyone firstly just like to thank you all for you posts on Myocarditis it has raised my spirits.
i have been diagnosed about 2 months ago after a viral infection and my Mri has shown mild inflammation and heart scarring.
I find that when i rest i start to feel better and get carried away then over do it and have to rest again. It seems that resting and taking it easy as much as possible helps massively.
i do not experience much pain but i do have so heart races and flutters at night which i breath through and can be scary.
It can be very difficult to relax fully and rest as i have young children and we do not disclose what i am experiencing to avoid scaring them.
I been prescribed colchicine until the 30/5 then i will have another mri and review.
any other advice much appreciated
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Highbury87
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as you have found, rest is very important as part of recovery from Myocarditis - this is because of the effect the inflammation has on your heart muscle - it damages the parts of the muscle cells which make energby from oxygen and fuel - so your heart simply cannot pump as well as it should - it takes time for the cells to recover
you need extra rest to allow you to recover, so you must put your health first at the mmoment, in order to reduce the chances of relapse and recurrence
i don't have children and don't know how old your children are, but parents are told that in an emergency, like a sinking boat or air incident, to ensure their own safety first (e.g. by putting on their safety jacket/oxygen mask etc) then look after the children - children will do better in the long-term with a functioning parent - so please find a way to explain to your children that you are poorly and can't do everything you used to for now, so you need to take it easy until you feel better
I have recurrent myo meaning anytime i get a cold etc i donget a flare up sometimes incan deal with it othertimes sends me back into hospital.
Keep up with the colchicine as this will bring down the inflammation.
Rest is key and keeping your hr down as much as possible. I frequently have to have naps throughout the day as i can feel myself starting to fatigue. Listen to your body as much as possible.
On a side note i am often perscribed Prednisolone along with colchicine so if thing dont start imlroving, maybe worth speaking to your doctor.
I have got to the stage where i have been referred to Royal Brompton after 4 years so your symptoms and medication may differ.
I also take colchicine, not for myocarditis but for chronic pericarditis. It certainly does help reduce the inflammation, alongside steroids occasionally, but the key thing I’ve found, and you have identified, is REST.
It is easy to overdo it- just simple day to day activities we usually take for granted as not much of an exertion, can leave me struggling for days. I still think that overdoing it in the beginning of having pericarditis for me (almost 3 years) was the cause of me developing 1st recurrence and then it became a pattern. So please, even when you feel like you’ve got a little more energy, take it very easy right now, it really is the key to a full recovery.
The other thing I found to be helpful is to explain to my family, that I need to pause and rest for now and just can’t do what i was doing previously. I didn’t say much to start with but once I had, it also helped.
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