Myocarditis anyone?

Hi all, I've been receiving positive and negative results for Lupus but from my symptoms and flares I'm fairly convinced it is.

Anyway, my question is has anyone here suffered from myocarditis? I'm currently holed up in my local hospital feeling rather sorry for myself. The first thought was that I had suffered a heart attack, so I'm rather relieved!

Apart from the usual fatigue, aches pains, brain fog, circulation issues etc. I'm reasonably healthy. I eat well, excercise and my weight and cholesterol are good.

I'd just be interested to hear fif anyone else has had a similar experience and that it was attributed to lupus or at least an autoimmune issue.

Thanks for your time! 

6 Replies

  • Hi Kimbo

    Yeuch. Hospital. My heart goes out to you. Got the xtra blanket you asked for? I always have freezing feet in hospital. I hope there is not too much excitement around tonight and that you get some restful sleep. I have no xperience of myocarditis but have read it can be because of Lupus.

    Will be thinking of you through the night chuck! You are not alone.

    Have a comfortable night, and get loads of reassurance and answers and swift discharge when the week starts.

    Hugs n best wishes



  • My mother has hypertrophic myocarditis and I strongly suspect discoid lupus.  Because of her age and infirmity the consultant I see for my lupus said all the testing and trips to hospital apps would be too much for her to endure and because of her age (late 80's) to leave things as they were.  Iv had the test for myocarditis but thank heavens it came back negative.  I really feel for you, take good care of yourself.

  • Hi kimbobaggins

    So sorry you are ill in hospital. Hope you soon get sorted and you can go home. I have experience of the other one pericarditis but know that both myocarditis and pericarditis are to do with lupus. What a relief you didn't have a heart attack. They will probably increase your lupus treatment so I hope you feel better soon.



  • I suffered myocarditis when I was 38 and was off work for many weeks. 

    I had always had a problem with tachycardia, but the doctors never got to the bottom of the problem, i.e. autoimmune problem. 

    I had always suffered with bouts of bronchitis, rashes, skin and nail problems, fatigue where I used to have to nap in the afternoons even when young and slept for 11 hours at night. 

    My mother always told people I was a good baby because I slept all the time and she even had to wake me for feeds, but actually, I suspect I was a sick baby. 

    My childhood was dogged with infections including ear and chest. 

    My whole life has been different to others I realise and I suffered 3 miscarriages including one set of twins.  I had to rest for 17 weeks to have my daughter. 

    I then became seriously ill when I went into hospital for a bladder and bowel prolapse, but was given a hysterectomy and they couldn't do the bowel repair because my blood pressure was dropping dangerously. 

    To cut a long story short I suffered with the bowel afterwards and ended up with Crohn's. 

    I turned to complementary practitioners for help and they helped me so much because I realised that conventional doctors just didn't understand my body and were killing me with drugs and surgery.

    My tachycardia is a lot better since I was taught muscle testing by a kinesiologist to see what I should eat.  It was actually due to allergies of dairy, grains and other food and chemicals  including celery - I remember celery setting tachycardia off. 

    Our bodies are truly complicated objects and we are all different. 

    All the best with your recovery and let us know how you get on. X

  • Have you been investigated for lupus by a rheumatologist? 

    Here is what 'The Lupus Encyclopedia' by Donald E. Thomas Jr, says about myocarditis;

    "Myocarditis occurs when SLE causes direct inflammation of the heart muscle. Over time, the body may be able to heal the inflammation, but often will leave permanent scar tissue (a condition called fibrosis). When there is either active inflammation or fibrosis of the heart muscle, the heart may not be able to squeeze blood normally and may have difficulty pumping blood correctly. This can cause shortness of breath, chest pain, and a rapid heart rate. When it is severe, fluid may back up in the lungs and collect in the ankles (called oedema), causing the ankles to become swollen. Congestive heart failure occurs when the heart is unable to pump blood efficiently and fluid builds up in the body. Fortunately, only 5% to 10% of SLE patients will develop myocarditis that actually causes any significant problems, even though autopsy studies show that 40% to 70% of SLE patients have had some degree of myocarditis at some point in their lives."

    If you would like to read more information about myocarditis I would recommend this website -

    If you would like more information about lupus and how it is diagnosed, you can download or request one of our free packs at

  • Thank you all so  much for your replies and apologies for replying so late. Two weeks after my myocarditis episode I had an actual heart attack. It was a real shock as I'm a good weight, my fitness is as good as it can be and my cholesterol is perfect. 

    One of my arteries went into spasm and cut off the supply to my heart, I was rushed to a&e and straight into surgery to have a stent fitted. I'm now in recovery and trying to push through an appointment with my rhuemy without much luck. My GP has been in touch too, but I still  have a three week wait to see someone. I've left a message with his secretary in the hope I'll get one sooner. If it was due to Lupus or whatever it is I have surely I should be tested whilst I'm flaring?!

    Anyway, thanks again everyone. This is such a great and supportive site. If I get any answers I'll be sure to share, it might help someone else out there.

    K x

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