diagnosed with myocarditis

[Khal1]

Dear all,

I was diagnosed with myocarditis a week ago and now still continue to take the medicine. My symptoms previously just chest pain and jaw. I was diagnosed and confirmed by MRI Cardiac and thanks god ECGs, Echo & Angiogram all cleared.

I also have gerd and anxiety, after discharged from hospital sometimes i felt like muscle spasm and jaw spasm.

I’m a bit down due to this condition because I’m active young man that now only 29 years old. Also, is it normal we feel the jaw spasm?

I really need some motivation or any tips to handle this situation that I’m okay.

[cotonh]

Somebody mentioned this site cardiomyopathy.org for information. As well as the British Heart foundation and the Pumping Marvellous sites. If you look through the posts on here you will find lots of young people to connect with. Definitely keep taking the medication unless the professionals tell you not to at this early stage. Getting a diagnosis like this is hard and distressing. It is perfectly appropriate to be anxious. Write down all the things you want to ask and find out about and either talk to the people who are treating you and / or ask here.

[Khal1 in reply to cotonh]

totally understand. Thank you for the information and take care

[Drawforaliving]

Hi Khal1, I currently have pericarditis ( obviously different but some similarities). I ve had it since last November but being free of too many other ailments and youngish my gp continuously turned me away. Luckily I have access to a cardiologist who I contacted and he diagnosed pericarditis, but by this time I was untreated for 3 months. Currently I am improving but still a good way off 100%. It's really really important not to push yourself. This is not something you can push through. I know you are young but trust me that physical exertion is a very bad idea until symptoms reside. It will flair and delay recovery. I'm 6 months in recovery and it can take longer. I ceased alcohol completely and adopted an anti inflammatory diet as I found it helped. Good luck I know it's absolutely debilitating at times but you can get better eventually (which a lot of people on this forum don't get the option to) I just wanted to let you know it can be a bit of a slog to get there. I have taken it as a huge wake up call to how important health is. As an active person myself I have had a taste of what it is like to hardly be able to walk/do anything physical etc. and it is horrendous.

[TaylorW in reply to Drawforaliving]

Yeh Spot on...I've had Pericarditis since 2009 and its Brutal at times. Take it slow and don't push it and give your body time to recover. Keep stress free if you can and try to find some sort of calm and peace and that might help the recovery quicker. Easier said than done and Good Luck. My Cardiologist we had a Joke...He would say 'Don't get angry...Dont get excited...No Stress'. Its a Tough gig but I wish your all the best of luck.

[Khal1 in reply to Drawforaliving]

Oh no, I'm sorry to hear that you have Pericarditis. Yeah I know it hard for us who diagnosed with myocarditis and pericarditis. Only people diagnosed with this health condition know how anxious it can be until we fully recover. I wish you speedy recovery and don't think too much ya.

[fishonabike]

i don't have myocarditis, but i am an ex-nurse with limited experience of seeing people with the condition - i also have a long term condition which limits my activity levels, this developed when i was young and learning to live with something which stops you doing everything you love doing and need to do is extremely difficult

right now you are trying to live with a condition which hurts, limits your activities and is not well understood - i know how hard this can be

you may know some of this already, but just in case you don't: Myocarditis is inflammation of the heart muscle - inflammation affects muscle (and other tissue) in several ways but an imortant one is that it reduces the cell's ability to use oxygen and fuel to make energy - this means that the muscle can not work properly, so it means your heart can't pump blood properly to itself and to the rest of your body

the result is that:

your heart hurts because of the lack of oxygen, this scan show up as chest, arm, back, shoulder, jaw and/or neck pain as wll as feeling like indigestion/wind/reflux

you get tired very quickly and can't do much without getting more pain

you might also get breathless and experience other symptoms

as well as affecting reducing the muscle activity, inflammation causes swelling which can cause pressure on and narrowing of the blood vessels in you heart which bring the oxygen and fuel - double whammy!

i hope this helps you understand why you feel so rubbish (polite word)

there are some online groups which aim to support people with myocarditis and pericarditis, there are several on Facebook, you might find some practical advice and info there as well - theere are also other posts here about this, you can find them by doing a search

good luck

[Khal1 in reply to fishonabike]

Hi Fishonabike, I'm totally understand your sharing with us. This information really helped me not be so anxious and overthinking. Thank you so much for sharing this.

[Catkin-blake]

I have had myocarditis, and the thing you need to do, is do as they say rest, and taking it easy. This is really sitting on the sofa, no heavy lifting or anything which places stress on your heart or chest, until you get the all clear from your cardio. Sometimes it resolves in awe or two and sometimes 6 months plus ( for me it was 3 months before given the go-ahead to exercise) BUT you do get better its just time and patience.

The positive for you is you caught it and started treatment before you did any damage to your heart ( I have scarring from a heart event ) It can be very frightening and scary, so if you feel you need any advice or someone to talk to you can phone the BHF nurse help line.

[Khal1]

Hi Catkin, I hope you have speedy recovery. I know rest is much important for now however the symptoms still exist as i still felt chest and jaw pain. Do you feel the same symptoms?