1. Community
  2. Heart Health
  3. Cardiovascular Disorders

Do You Know of Anyone Suffering with Myocarditis?

Posted , 32 users are following.

Frizzychris
Frizzychris

My story in short. While riding my bike at an extremely slow pace. I became short of breath, dizzy and experienced numbness in my arms. Went to the emergency room told them what happened..had an ecg that came back normal, my chest xray came back normal. But thanks to the wonderful doctor he said he would like to take one more test just to be sure. It was the tell tale sign of any heart damage ..the troponin test came back at 13. quite high. Normal troponin level is 0.02. Had every drug they could give me as I was told I had an heart attack. Taken to the ICU Heart Care Unit after days days of

fantastic care given to me I was off to another hospital for an Angiogram to fit stents in my arteries to open up the blockages. Came out of surgery and asked the surgeon how many stents do I have..

though I led an advanced aerobics class and road my bike 14 miles 2-3 times a week, dont drink alcohol, Logistics Coordinator of a Fruit and Veg scheme, eat healthly. Its possible that maybe I had 1 too many curries. The surgeons response was you have pristine arteries. Wow! Great thanks. So why all the chest pain. Well that was in April 2013, I was told I contracted a viral infection of some sort. Bed rest for two week Ibruprofen 3 times a day. The inflammation of your heart muscle and heart lining should clear up. July same thing but I was sitting down couldn't catch my breath the muscles in my arms felt like they were turning to mush. Now on 50mg of Declafenac, 16mg of Cocodemol

both 3x a day and 1 Omneprazol once a day. I am due to have my MRI Stress Profusion test soon. I just want to know is there anyone suffering with this rare heart condition? There is no cure. Footballers and otherwise healthy people die suddenly from it. Talking to my friends is pointless as they still say "Ohh just keep watching what you eat" "Eat healthy foods no snacking". It is so clear that they are not listening to me. Does anyone know of someone else that suffers with this debilitating disease?

4 likes, 65 replies

65 Replies

Prev Next
  • helcamp1
    helcamp1 Frizzychris

    Posted

    I am hoping this discussion is still going on.  I was diagnosed with myocarditis in March of 2015 after ending up in the ER.  It has now been six months, and I am still struggling.  The struggle to breathe is constant, chest pains come and go, the fatigue and tiredness is overwhelming at times.  Things got better, not completely but better, in July then it started all over again mid August.  I am so afraid this is how it will be for the rest of my life.  I was active, went to the gym, rode my bike everywhere, don't smoke, rarely drink and eat healthy.  Has anyone you've corresponded with found any solutions?  I've read a lot of the posts but not all of them.  I am constantly told it takes time, can take up to a year to heal.  I am in the US, and if anyone has any answers or a really good doctor to talk to I'd love to hear about it. I hope you are improving FrizzyChris.  Thanks for listening.  
    • ian19404
      ian19404 helcamp1

      Posted

      Hi Helcamp1. I'm not sure if I'm a typical case (is anything about myocarditis typical?), but I had a strong feeling that the drugs I was given (ramipril, bisoprolol) were holding me back from making a good recovery.

      Like you, I was (and still am) relatively fit, never smoked, moderate drinker, healthy eater. I had months of fatigue and generally feeling listless until I made the decision to (rapidly) wean myself off both. The solid and sudden improvement was encouraging and I've felt back to 100% for many months now - vindicated by my March 2015 check-up and results (10 weeks later!) which stated "heart function essentially normal".

      Obviously I can't advise you on your circumstances (I've no medical training), but please be encouraged that full recovery IS possible.

      Wishing you all the best from the UK.

    • helcamp1
      helcamp1 ian19404

      Posted

      Thanks for the positive feedback.  I am not sure I will ever bee 100% again.  I am not taking any of the drugs but the struggle to breathe, the fatigue and occasional chest pains continue to remind me that I am not the same as I was 7 months ago.  New doctor, new round of test coming up.  

      Happy to hear you are doing well!  Good luck and stay healthy!

  • lindsey_27911
    lindsey_27911 Frizzychris

    Posted

    Hi my partner got diagnosed with myocarditis last June. it has returned on and off since June and has once again returned now. he is on 50mg dicloflex 3 times a day and omeprazole 1 times a day. we are waiting to see the doctor on Tuesday to see what the blood results reveal but it's pretty clear it has returned. he gets tiredness up to the point he is sleeping more than he is awake, breathlessness and pain on the heart. There isn't a cure for it and hospitals will treat it as a heart attack because all the symptoms point to a heart attack. It is only if they do a certain blood test that they will discover what it really is. my partner has been through everything you have been through also ecg etc and he has had all the symptoms you have described. Hope this helps smile
  • jacqui1162
    jacqui1162 Frizzychris

    Posted

    I was told in Nov 2014 that I had heart failure I have had all the tests twice and been put on Ramipril 1.25 mg and Bisoprolol. 2.5 mg one at night one in the morning as I get very dizzy if I take them together. When I had my echo my ejection fraction (e f ) was 31% a year later it was 55%. However my breathlessness was no better so I had the tests again including a lung capacity this week as the cardiologist says he thinks I may have Myocarditis through a virus I may of caught at work ( hospital ). I never realized until reading all the other replies on here that it is rare and also widely under diagnosed. I'm glad I have found others who have the same as me as people treat me like I have had a heart attack and I haven't. I'm still waiting 15 months down the line to be told exactly what is wrong but Myocarditis seems to be the favourite with the cardiologist at the moment
    • helcamp1
      helcamp1 jacqui1162

      Posted

      I was diagnosed with myocarditis also believed to be caused by a virus I caught at a huge outdoor festivale.  This was in March of 2015.  I was sick for a month, antibiotics, steriods over and over until I couldn't breathe and had chest pains.  I was admitted to the hospital and the diagnosis was myocarditis.  Fast for to now, after the worse year of my life, phyiscally, I am starting to get back to normal.  Still have shortness of breath, like a pressure on my chest but nothing like it was.  I was completely worked up at the Mayo Clinic and they found nothing else wrong.  15 months recover is sounding about right to me.  You didn't say how old you are, I am 51 am probably part of the reason it to so long to recover.  But keep positive, it will get better. I didn't think so for a long time but I'm about 95% back to normal.  So hopefully you will be too soon!
  • jacqui1162
    jacqui1162 Frizzychris

    Posted

    Thank you for your reply I am 54
    • helcamp1
      helcamp1 jacqui1162

      Posted

      The biggest problem I am having is why do I keep sliding back into the symptoms?  All the doctors I have seen say it can just be an extremely long healing process.  I still struggle to breathe, and particularly get a deep breath.  The fatigue starts up again and I get so exhausted I can't function normally.  I am trying to get back to a good place, though it's hard.  I get so worried that this is the best it will get and I will just have to deal with it.  I'd appreciate hearing anything new the doctors might tell you or anything you do to feel better.
    • jacqui1162
      jacqui1162 helcamp1

      Posted

      I am still waiting for an appointment to see the cardiologist but when I do I will let you know if he tells me anything new. The only thing I do to help myself is walk every day but gently I don't do speed walking or anything. Unfortunately I haven't got to grips with anything special to help me rest or sleep ( what's that) but I think walking everyday is good for you.
  • neo07603
    neo07603 Frizzychris

    Posted

    Hi guys my name is Neo and I've been reading your messages as a way of lifting me up. I was diagnosed with GIENT CELL MYOCARDITIS in 2009 and I was told that people with this condition only live up to a year of being diagnosed. I just wanna say I feel your pains brothers and sisters and I just want to encourage you a little. I was told that I was dying in 4 months after being diagnosed and I've proved research wrong as it has been 9 years and still fighting. I'm on a list of a new transplant which takes place 29th March. 

    I wish you all the best in getting better guys, I have great love for you guys God bless. 

    • glynis21184
      glynis21184 neo07603

      Posted

      I wish you the best of everything. Hope to goodness your transplant goes well. Bless you. 
  • jacqui1162
    jacqui1162 Frizzychris

    Posted

    Thank you Neo. I hope everything works out for you. So glad you have proved the Doc's wrong.
  • jenna92914
    jenna92914 Frizzychris

    Posted

    Hi Everyone

    I've just come across this forum discussion and wondered how you are all getting on? Not sure if people are still reading this as Frizzychris posted over a year ago?

    I had Myocarditis about 14 months ago and luckily recovered really well. Last week, however, I started to get the chest pressure again which is getting worse so I decided to get checked out. All of my tests came back fine (they were all normal before apart from troponin levels) so the doctor thinks I'm just worrying unnecessarily. I know there's something not quite right and perhaps it's totally unrelated but with similar symptoms, so I wondered if anyone has been in a similar situation?

    The only thing I've done differently in the last week is vigorous exercise and I'm wondering if that's brought on the pain?

    It would be good to hear from anyone in a similar situation

    Jenna

    • derek87707
      derek87707 jenna92914

      Posted

      Hey Jenna,

      I am 27 years old. Never had any health issues before. I work out a lot and eat healthy. I first got Myocarditis out of no where 5 months ago (late March 2016). I experienced pain everyday until the begining of June. Pain pretty much completely went away. Started exercising again, boxing, running, crossift. Worked out for about 9 weeks straight 5 to 7 times a week. Felt good, but just about a week ago I started getting pain again. It's really frustrating because working out has made me so damn happy and I am afriad if I don't stop that I could be risking my life here. The doctors are not helping much. Feel like I am treated like another number to them. They want me to rest and take the time to heal, but its very difficult for me to just sit around. So frustrated at the moment rolleyes. Hoping this will pass and that you are doing better now!

      Best,

      ?Derek

    • glynis21184
      glynis21184 derek87707

      Posted

      Hi Derek,

      how are you doing? Hope you are recovering. I was diagnosed with myocarditis in Feb 2016, told I have severe heart failure and an ejection fraction of 30/35%. Like you I love sport particularly mountain walking and cycling. I have tried short slow walks and end up with extra heart beats that frighten me. I have had some runs of VT which are dangerous.

      I would love to hear from you or anyone else who has posted on this site to get an update on how things are going. I am having a very bad time at the moment dealing with the loss of my way of life so it would be good to talk.

      heart felt wishes to you all

      Glynis

    • gary00593
      gary00593 glynis21184

      Posted

      Hi Glynis,

      Hope you are recovering well. I start have arrhythmia on and off in 2015. Finally NSVT was caught on holter in October. Since then I had stress test, echo, MRI, Angiogram and EP study. They found subepicardium scarring in my heart and suspected Myocarditis. I'm on beta blocker and anti-arrthymic. EF was 59% in October 2015 and went down to 54% last month.

      Feel free to write back and keep us updated on your recovery.

      Get well!

      Gary

    • glynis21184
      glynis21184 gary00593

      Posted

      Hi Gary, unfortunately I have deteriorated and have been given a new diagnosis of arrythmiogenic ventricular cardiomyopathy. This means that heart cells are replaced by fatty cells, its progressive and possibly genetic. I may have passed it on to my two sons, they will need screening for the disease. I have had a ICD fitted last tue and feeling very frightened. I have spent all year thinking I would make some kind of recovery but I have been told that my EF will never improve from the 38% it is at the moment. I can only deteriorate. Thanks for your post, I am sorry I am so negative. Feel like I have been given a death sentence. You sound like you are cont to hold your own, long may that last. Take care, Glynis x
    • justin30
      justin30 glynis21184

      Posted

      Hi all.

      Im new to this and undortunately new to pericarditis and perimyocarditis.

      I have had flu and 3 days into the flu i woke early hours with agonising chest pain , later that day i become very breathless, i called a doctor and got an appt same day.

      The doctor saw me and sent me syraight to A n E immediately.

      Thats where they run all the tests and troponin levels were over 12000 ( very high )

      In honesty they still ( think ) its pericarditis and perimyocarditis...nothing has veen set in stone!

      I spent a week in hospital, having test after test, echo confirmed heart wasnt pumping as it should etc...

      I was discharged under strict rest and given pills to take.

      Naproxen

      Ramipril

      Bisoprolol

      Omeprazol

      Paracetamol

      As i say its been about 2 weeks and some days i feel ok ish and others im a mess.

      Any advice would be greatly appreciated...many thanks all.

    • julie28670
      julie28670 derek87707

      Posted

      My son has same condition he is on turmeric for imflamitry. And lowers enzymes And cardioace for heart it's with a try has proven to help in studies

    • julie28670
      julie28670 glynis21184

      Posted

      My son has same condition he's on turmeric to lower imflamitry and enzymes has proven in study in 2013 and cardioace all the vitamins needed for normal heart funation

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.