Hi,
I’m supposed to have Myocarditis (still awaiting MRI results) and 7 weeks in still feel awful when I try to walk more than just a few steps at a time.
For example today, i walked into a pharmacy and out and although my heart wasn’t racing (85 bpm), I felt very short of breath.
This is worrying me as I don’t see much progress week after week.
How long did it take you before you could walk again? Or before you saw any major improvements?
Im just looking for an end to this tunnel 😩.
I’m sorry to have to write a gloomy or discouraging post but I’ve had myocarditis for about a year and it has been a very very slow improvement. They say the more you rest, the more easily your heart can heal. Search this board and there is a lot of good help from posters like “Captain Birdseye” and others who have experienced myocarditis. I still have to move very slowly not to set my heart pounding. But the MRIs show it was measurably better after 6 months. So it takes a long time but if you can, be patient with yourself and be willing to do everything slowly, no lifting or straining. I also find if I eat small meals and rest afterward that helps. (Larger meals or not resting afterward, than my heart pounds and shudders and races and usually hurts). Others know more (I’m fairly new at this) mais on est très sympa ici! Sorry this happened to you. Courage—you can get through!
Thanks Acoldiron for your reply. Sorry to hear you’re still unwell after a year. When you mention “very slow improvement”, do you imply still no walking outside your home?
* I did mean “have myocarditis “ (not face). I haven’t found out yet how to edit posts on here 🤔
Click on ‘More’ below your reply then click on ‘edit’. Hope that helps.
Thanks!
Hello again, healing_heart; I changed usernames but can still reply. Yes, they told me:
Strict rest, no swimming, no walking, no yoga (very gentle stretching is good but no straining or exertion). No alcohol, max 1 small coffee, avoid sugar, eat small meals.
But your own docs will tell you what suits your case and within the general mantra “rest, rest again, and then rest afterwards” each case can vary. This has been an unpleasant adjustment for me as I had been very active/athletic before. I’m going for another cardiologist checkup in early December and shall ask if I might be permitted a short, slow walk outside, or even working up from nothing to a very short walk to a medium walk etc. But the setbacks of even slight overdoing are not worth it, as people here can testify. At my year anniversary of diagnosis I do intend to splurge and have one small glass of champagne. But I’ll check first of course. Save your energy, make every trip count, go slowly, eat small meals and rest after. Avoid caffeine, have lots of veg and fish; some told me that taurine and L-carnitine support the healing but I’m not trying them yet. I like magnesium and Co-enzyme Q10, as O seem to get fewer pains and palpitations when I take them steadily, but again, ymmv and your doctor’s advice is the advice to take of course.
I hope you heal well and quickly. This is pretty unnerving, frankly, in the way it can stop previously strong and energetic people in their tracks. That part I’m still not used to. Good luck to us all.
Hello Britomartis,
After a week feeling better at rest and walking at home, I tried to go to buy groceries yesterday with my daughter and felt awful. Strangely my HB wasn’t very high (max 87) but I felt I had no air yo breathe. It was my first attempt outside my home in weeks 😞.
I’m seeing the cardiologist at last next week and will get the MRI results.
I’ve been taking Arjuna which helps keep my HB normal-ish and less short of breath.
I haven’t had coffee or alcohol in weeks, and I’m trying to eat even smaller meals since the terrible chest pain I had 2 weeks ago that sent ne back to ER. But I’m seriously wondering if GERD could be the cause of this asthma, especially that the whole thing started with heartburn.
Do or did you feel short of breath when resting too?
I do feel both chest pain and shortness of breath whether resting or not but both get much worse when I’m up and about. If I try to do anything at all after eating, such as clear the table or wash dishes, it can get severe. Smaller and smaller meals have helped. When they say rest, and then rest more, they mean that literally. So to keep myself from losing too much muscle and bone I have a set of stretching and isometric routines. I only do one stretch or one isometric at a time—about four single things each hour—-and I do not strain. This nearly-nothing sounds pointless but I find it helps. If you want me to describe this more specifically, I can. But I agree with you and sympathize—when I tried to walk (which I dearly love to do) and got so ill after a very slight exertion, well, this is demoralizing.😥 indeed. I’m almost a year into this. Best wishes to you.
A year sounds very long indeed, i hope you’ll see some major improvements soon.
I have also started doing restorative yoga to start doing relaxing/stretching postures associated with better breathing.
I wish you a good day ☺️
Hi, 7 weeks is very early to be walking in some cases. I was 3months before I went outside my flat. After 6 months I holiday'd in Disneyland Paris - a pre booked major family event - but was in a wheelchair for much of the time.
Best advice I can give is do stay home and rest for as long as you can. Imagine your heart strain was a pulled hamstring, you would STOP & rest until healed then slowly & steadily exercise it to rebuild strength & stamina.
Your heart has gone through a major traumaand needs time to heal.
Every case is different, less or more severe, accompanied with other conditions or on its own so there are no hard & fast rules but REST REST REST really does help. I wish you well in your recovery.
Thanks HHH, I guess I’ll have to teach myself patience 😞.
Not easy BUT so worth it 💪🏽 you got this 🫶🏽
as someone else has already said, the best thing you can do is rest - but also understanding a bit out your condition might also help:
Myocarditis is inflammation of the heart muscle this takes time to resolve because the muscle needs to go through the inflamatory process/cycle and then recover
one of the things which happens during inflammation is that the part of the heart muscle cells which makes energy from oxygen and fuel mitochondria) does not work properly, so your heart can't pump well because it does not have enough energy in the cells - once you have enough mitochondria working properly again you will be able to do more very gradually - but they are sensitive little things so you need to go very gently while they build up and get back to normal
meanwhile learning to pace yourself is a good idea - the MS society do really helpful guidance on this - i know you don't have MS, but the process can be applied to a wide variety of conditions - i's worth taking a look:
mssociety.org.uk/about-ms/s...
thanks a lot Fishonabike 🙂, I’ll have a look at what you sent. And thanks for your explanations, - it’s true that I know very little about this condition and whenever I thought of reading stuff online, it sounded rather scary so I chose not to.
the stuff online won't explain the effect of the inflammation on your muscle cells, at least probably not in an understandable way!
What’s unclear is how long the effect lasts once the inflammation is “officially “ gone. Apparently my blood test shows no more inflammation and troponins at zero.
i doubt that anyone will be able to answe that and suspect that it vaaries from one person to another - but as far as i am aware there is no medication which can help and recovery can be slow - so learn about rationing your activity and staying in energy credit - it will stand you in good stead well beyond recovery!
P.S. I had and have still troponins at zero despite MRI showing clear myocarditis and significant inflammation/edema in the heart. I later learned that the biotin supplements in many vitamins mess up the troponin tests to make them look like zero! 🤷♀️
How long did it take before you started rehabilitation clinic 
How long
How Long?
How long trouble-free?
How long GP referral?
