Myocarditis

[MaguireB]

Hi I have had two attacks of myocarditis which has came from rheumatic fever....I am on steroids along with other meds and don't feel as if I am getting any better? Sweats, chest pains, tiredness and shortness of breath etc. Any one else experiencing the same and is it a slow process of recovery......I do have critical illness cover has anyone claimed and been awarded this?

[Sunnie2day]

Hello and welcome! Are you in the UK?

When did you have rheumatic fever? Did you later get a diagnosis of Rheumatic Heart Syndrome?

I had the fever as a child in the early 1960s, a year later got the RHS diagnosis. My RHS gave me: 'mild' Rheumatoid Arthritis (RA), 'trivial' scarring on my aortic valve, and an apparent predisposition to pericarditis.

Over the years I've met several other RHS patients who have an apparent predisposition to myocarditis and some other conditions, it varies from patient to patient as to which (if any) complications rheumatic fever can cause.

Not having had myocarditis, I don't know about treatments and recovery times - your medical team should be the ones to advise.

Also, the BHF site has downloadable leaflets with great information to add to what your medical team says. On the BHF website, use the search term 'myocarditis', 'rheumatic fever', and 'rheumatic heart syndrome' to find the publications.

[Cookie95]

Hi! I can confirm myocarditis can have a veeeeery slow recovery process. It can be really frustrating, and you might sometimes feel isolated or misunderstood by family, friends, colleagues... because the pain isn’t obvious and people tend to forget.

My recommendation is to gather as much patience and strength as you can, rest loads, radically change your lifestyle (no more processed foods, alcohol, smoking), avoid stress and overwhelming situations, and again, rest.

I hope it gets better little by little, or that at least some days you feel hopeful again. I had acute myocarditis plus pericarditis and still carry the symptoms but by resting and eating almost only vegetables and fruits I’m slowly nursing myself back to health. Don’t give up!!!

[Heartandy]

I too have had (at least) two episodes of myocarditis over the last 18 months. Last one was 3 months ago. I suffer from shortness of breath and chest pains. All immune testing has come back negative so don’t know root cause. I’m accepting that recovery will be long but determined not too be frustrated by it even if I need to make changes to lifestyle. I’m keeping a symptom diary to see if I can identify triggers etc.

I don’t have critical illness cover but may need to make a significant change to my work role (it previously being a very high intensity role) depending on how return to work goes.

Good luck with your recovery.

[HHH2017]

Hi, i don’t have critical illness cover but think a claim is worth investigating for you. I had myocarditis and pericarditis acutely and am still recovering 2 years on. After a year I went back to teaching part time but then took early retirement in July. It can be a very long road to recovery depending on severity of attack & other health factors. Be kind to yourself and take it easy. Do let us know if you are successful as Im sure it would help others.