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
  • glynis21184
    glynis21184 Frizzychris

    Posted

    Hi Frizzychris, how are you now? Have you recovered? I really hope so, you sound like you were very fit before the myocarditis. I was diagnosed with the same thing in Feb this year, I am struggling to come to terms with it as I was very fit before the virus. I am unable to go back to work as a rheumatology physiotherapist yet, don't know if I ever will be. I read your story and thought you might be able to give me some tips on recovery. Wishing you all the best. Glynis.
  • glynis21184
    glynis21184 Frizzychris

    Posted

    Hi there, don't know if anyone is still using this site but it would be great if someone could pass on any reassurance that myocarditis gets better. I was diagnosed in Feb '16 following a visit to A&E with palpitations and feeling tired. I had managed to work as normal and do a trek over local moorland a few days before without any problems. It was a shock to find out (after an echocardiogram) that I had mod to severe heart failure with an ejection fraction of 30% to 35%. Then started with dangerous Arrythmias, I was on coronary care for 3 weeks. MRI scan showed extensive inflammation and fibrosis, sent home on amiodarone, beta blockers, ace inhibitors, diuretics; I rested for 6 weeks then had a repeat echo but no improvement. I was devastated, mental state very bad. Like everyone on this site I went from working, looking after my family and mountain walking to bed rest. No respite for all the negative thoughts. Made a will, sorted out finances and waited to die.

    More recently have seen an improvement, friends have taken me out to cafes for lunch and I have started painting landscapes again. But having tight chest and palp after activities that make me scared again. It is now 4 months since my 1st admission (had 3in all), has anyone cont to improve after 4 months?

    I hope everyone in this myocarditis family is recovering and getting back to a normal life. Bless you all. Glynis xx

    • kristie1978
      kristie1978 glynis21184

      Posted

      Hi glynis, i sound just like you healthy hard worker to bed rest waiting to die i cry every day and my husband diesnt understand. Cardiologist wants me to be on ibuprofin to try and diagnose me because all my test look good my triponins are elevated i feel like jello, dizzy, and cant breathe. My mental is foggy. Im worried about ibuprofin because it can cause heart issues and also make heart failure worse. Im just scared of everything. Im scared to take it and scared not to take it. Im stuck and wonder when im going to die instead of living a nd taming care if my family. i feel handicapped. Any good advise is needed. Thank you in advance
    • karen82036
      karen82036 glynis21184

      Posted

      Hi Glynis

      I had myocarditis in 2009. It was a long recovery 10 months. But I did recover and went back to doing all the things I did before. There is no quick fix......just rest. It's frustrating especially when you live a busy life but it does get better. I hope you recover soon and wish you well.

    • glynis21184
      glynis21184 karen82036

      Posted

      Thank you Karen for your kind words of encouragement. I really appreciate that you took the time to send your message. I am so glad that you have recovered and are back to doing all the things you did before the Myocarditis. It gives us all hope.

      bless you and I wish you cont good health. Glynis X 

    • glynis21184
      glynis21184 kristie1978

      Posted

      hi Kristie. I hope you are feeling a little less scared today. I understand how frightening the disease is and the medication needed to help recovery. I am sorry that your husband doesn't understand, he maybe scared himself seeing you so ill. I also have that "foggy" feeling, sometimes I struggle to keep awake due to the meds. I am 7months now since diagnosis and sill not back to work, managed a 3 mile walk on the flat on Monday, it took me 2 hours which is soooooo slow. But better than a few months ago so making some progress. 

      I hope you soon feel well and less frightened. Wishing you all the best. Glynis X 

  • marcella17593
    marcella17593 Frizzychris

    Posted

    I am so glad that you went to see the doctor.  I think that is very wise.  Just do what he or she says to do, follow their diagnosis, and you can also do some internet researches on myocarditis and see if you can gather more information.  I wish you the best.  Purplespider, CNA
  • paul78751
    paul78751 Frizzychris

    Posted

    Hi all.

    I had myocarditis two months ago.

    Mild food poisoning symptoms the two days later being carted off in an ambulance with sever chest pain and troponin levels through the roof.

    After two weeks in CCU I am home and currently on 5mg Ramipril and 2.5mg bisoprolol (consultant said to get up to 5mg but GP said pulse can't go any lower) so I guess I stay on this dose until my follow up cardiac MRI in a few months.

    I am trying to get back to normal and usually cycle to work (16miles a day/ 8miles each way)

    I went out on a very brief ride for the first time today, probably my no more than 20mins, no major hills. Since getting back I have pain in my chest (10hours later) - not the stabbing pain but discomfort.

    Is this due to the pills?? Do you just get used to it or does it get better as you start to get used to exercising again? I guess I just don't want to cycle to work and then either collapse or do any damage and end up going backwards.

    Am trying to work out what are side effects of the tablets and what I symptoms I should ignore.

    Googling my medication and symptoms brought me to this site and reading all your posts don't quite give me the answers I was looking for.

    Am 36 and relatively healthy.

    Any advice greatly received.

    • glynis21184
      glynis21184 paul78751

      Posted

      Hi Paul,

      sorry to hear you have developed myocarditis, it's a swine of a disease. Sounds like you are doing quite well if you are up and about and even attempting to ride your bike. I am on 12.5 bisoprolol plus a whole load of other cardiac drugs that slow me down. What is your heart rate? Mine used to be in the 70s but is now in the 50s due to all the drugs. From what I have read (after extensive research) the beta blockers and ramipril slow down the ongoing heart muscle damage caused by the infection. Although the side effects are difficult to deal with they are crucial for recovery. Riding your bike will be more difficult because your heart rate won't be able to increase in response to the exe due to the meds. There seems to be a consensus of opinion that to help the heart recover you should avoid exe for at least 6 months. It is nearly 5 months now since I was diagnosed with myocarditis and I am still not back to work and only just starting to walk outside (slowly) due to chest and throat pressure plus palpitations. Good luck, sounds like you have an excellent chance of a full recovery. I hope this helps. Glynis X 

    • paul78751
      paul78751 glynis21184

      Posted

      Thanks Glynis,

      I must admit I think having read everyone's comments on here I must have got off lightly.

      I am sorry to hear your recovery is taking so long. I am still off work bit hoping to return soon - was originally signed off for a week when I left hospital.

      I am a bit concerned about some of the stuff I have read on this forum/ thread as no one mentioned anything like others have described ie: Consultant, Hospital Staff or GP. I have been pushing myself to do loads as a I have two small children (2&5) and am quite active - sure I had ADHD as a kid (cheesygrin^)

      Having cycled yesterday I still have pain.

      I find after talking for long periods I get breathless and chest feels heavy. I have mentioned these side effects to the GP's but they don't seem concerned and just say if I get the stabbing pain to go back to A&E.

      My heart rate is 60 which is why my last GP said she wasn't going to put the bisoprolol up any higher.

      I wish you all the best in your recovery! Thank you Glynis

    • glynis21184
      glynis21184 paul78751

      Posted

      You are very welcome, sort of helps doesn't it to be able to communicate with others with the same problem. Hope you've had a good day with your little ones. Take care. Glynis

  • paul78751
    paul78751 Frizzychris

    Posted

    I don't know if this is helpful and I am sure anyone that can use Google will have found this already but my wife found this website http://www.myocarditisfoundation.org

    While I was in hospital and found some really useful information.

    I emailed them a few questions and had a very swift response from the Executive Director who was incredibly helpful and answered some of my questions much better than my GP or Drs from A&E.

    Feel a lot better about my recovery thanks to her advice.

    • helcamp1
      helcamp1 paul78751

      Posted

      My doctor is Leslie Cooper who is part of the foundation.  The site has been very useful for me.  It took me a long time to recover, longer than usual so this blog and all the info I've found was helpful.

  • glynis21184
    glynis21184 Frizzychris

    Posted

    Hi helcamp,

    i am wondering what your original ejection fraction was and how you were diagnosed. What meds are you on and how long did it take to recover?

    did you do any exe and if so how soon did you start? I am struggling to deal with the diagnosis from 5months ago. Seem to cry a lot.

    thanks or your advice. So glad you have recovered, hope you keep well. Take care, Glynis x

  • glynis21184
    glynis21184 Frizzychris

    Posted

    Hi there, I would like to talk with anyone with myocarditis as I am struggling with this disease. 
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.