Myocarditis

[Helly75]

Diagnosed with myocarditis in 2018 & again april 2021,really struggling to do anything, heartrate through the roof if I stand up or try & walk upstairs ,haven't left my house in 6 weeks. The pain I have is like burning throughout my chest with some shortness of breath. No follow up for 6 months & still haven't had MRI results explained to me . I'm very low & cry most days because I'm scared all the time 😞 cant seem to get past that feeling ,any advice would help

[RufusScamp]

Do you have a cardio nurse to contact? Otherwise, you need to talk to your GP, or call 111 for advice. To me, this seems to require investigation. I hope you get some help soon.

[Helly75 in reply to RufusScamp]

No cardio nurse & have been telling gp since I was discharged, been back to A&E twice already ,they just said it takes a long time to recover, thanks for the reply 🙂

[Hidden]

Hi Helly, I had myocarditis a couple of years ago. I went back into A&E a few times during recovering. I was housebound for 8 months and I understand completely how you feel. In the end I paid for a private cardiologist to do a stress test & got the NHS to repeat the MRI to compare from the first one so I knew it was safe to return to work. I don’t have any helpful advice really other than although there’s little to no cardio support, it does end and things do improve. I’m 100% ok cardio-wise now. It’s a huge failing of NHS the lack of support and frankly knowledge around myocarditis. Is there any support available via BHF? X

[Helly75 in reply to Hidden]

Hi bear, I just didn't go back to normal after the first time ,I fought so hard to get help & paid thousands for tests to be told there was nothing wrong,I even got as far as rapid access chest pain clinic, the nurse said I was depressed! I knew something was wrong & they didn't listen. I'm at home literally useless ,cant look after myself or anyone else . Even the A&E dr said I had heartburn & didn't tell me there was traponin in my blood & sent me home 😡I'm going to contact BHF today ,thanks very much for the reply x

[Hidden in reply to Helly75]

I’m so sorry - I was diagnosed with myocarditis then when I wasn’t recovering they said oh maybe not it’s not recovered in two weeks (!) so I sort of get that. I hope you get help, and I’m so sorry it reoccurred. Was/Is yours viral?

[Helly75 in reply to Hidden]

Its horrible isnt it? They didnt do any viral tests the first time until a rheumatologist decided she would 8 months later which is too late ,this time they did do tests & I still dont know ! It's only 6 weeks since I was discharged so it's very early days ,anything I try to do my body says no ,everything is just difficult 😞

[Hidden in reply to Helly75]

I completely understand. I think it’s really important that they find out if it’s viral or not; I know with viral there’s a small % increased chance of a reoccurrence but if it’s being caused by say an autoimmune response it will keep reoccurring. It’s good you’re under the care of a rheumatologist. Are they screening for ANAs? Mine was viral so I’m not totally up on the autoimmune side - I know the scleroderma I have could cause myocarditis but that’s not what happened in my case (I had pretty textbook viral symptoms). I know it’s because there’s no end in sight that makes it so frightening and upsetting. 8 months felt like forever for me, but in the long run and when you’re through this that will fall away. Fingers crossed they can work out the cause. I’d be researching around the autoimmune area myself - see what can be a cause other than viral (no doubt you are/have!) x

[Faaaz31 in reply to Hidden]

Hi Helly and Bear hope you guys are well? Hell I hope you are feeling better?

My name is Faaaxz n trust me helly I can relate to you .i have been suffering from chest pain last 5 months, pain is like a crushing, pressure like stabbing pain around my chest, it goes to my upper back n upper shoulders .

Anyway like you I was in hospital 4 months ago n they discharge me saying inflammation of the heart saying it was pericarditis .

But they said it will get better in 3,4 weeks for me to take paracetamol n ibuprofen.

But it's not helping, it's been 5 months still oain is there .

Been ANE X2 more times they say pericarditis n take pain killers, GP not helping much .

Any advice what I should do ?

Will I ever get better ?

I'm so scared and upset n worried..

[Hidden]

I’m so sorry - ANA is annoying you can have something and the test be negative I wish I could help

[Helly75 in reply to Hidden]

Dont worry ,its just one of those things ,even the fact you know what myocarditis is helps xx

[Hidden]

Behçet’s disease maybe?

[Helly75 in reply to Hidden]

Not sure of anything, gp thinks I have pots ,a lot of things can go hand in hand with that, I thought EDS ,fibromyalgia, ME/cfs ,I've been round in circles & haven't got anywhere, my symptoms seem to fit with lots of things & nothing at the same time x

[Hidden in reply to Helly75]

I’ve EDS and POTS and scleroderma, gastroparesis, deafness... I think the problem can be a lot of cross over. I wasn’t aware EDS was linked to myocarditis- I’d have thought I’d have found that!

[HHH2017]

Hi Helly75, I'm so sorry to hear what a bad time you are having. I remember that fear and the pain very well. It's a horrible time. But it will get better! I had Myocarditis and Pericarditis in Oct 2017.

I was in hospital for a couple of weeks v seriously ill. My heart is enlarged still and has some permanent damage.Life haschanged quite a bit BUT I walk every day, can play with my grandchildren, work part time now and do most things just at a slower gentler pace.

My cardiologist hasbeen v good so I think Ive been lucky but I do think its kinda 'assumed' that it will take at least 3-6months to recover so patients are 'left' to recover. This is such a scarey period though. For some of us it does take longer.

You are understandably scared of every pain & this is sometimes constant. I didnt go outfor months - I lived in a 2nd floor flat with no lift - if Id managed to get out I certainly wouldn't have got back in! After 2 years I was allowed to attend a cardio rehab group which was a huge support perhaps your GP could refer you in the future. Are you on anymedication? If not you should discuss this with GP/hospital. I use the graphs on my fitbit to show my cardiologist what my heart is doing. I get weird peaks whilst resting still (caused by the damage) but medication helps. Im on betablockers.

The nurses here on the helpline are REALLY supportive and knowledgable do talk to them and ask ALL your questions. I know its not much help but this condition doestake 'time'. Do rest as much aspossible but give yourself little targets/challenges when you are ready. Do ring theBHF nurses NOW, have a good chat, hopefully get some answers/reasurrances. Thinking of you. J

[Helly75 in reply to HHH2017]

Thanks for the reply , I'm so sorry to hear what you've been through. I never really went back to normal after the first time & didnt get any answers. I was very active & worked full time, I lost my job in 2019 because I wasnt fit to return ,I think losing being very active & busy was the worst part for me ,I'm a mother of 3 and now being looked after by my kids at the age of 45,I hate it! I'm taking beta blockers too and still dont know why ,I'm also taking colchicine but it makes me feel so unwell ,I had a cardiac mri within a week of being admitted but still dont know the results. Living in a cycle of distress & fear all the time . I live in NI so everything here is a nightmare, my gp has done her best but its beyond primary care.

[HHH2017 in reply to Helly75]

Hiya, sounds an awful time. I made the decision to give up work - couldnt stand the busy classroom/school environment and now private tutor part time from home. Hope you eventually find something to suit you but for now you need to take one day at a time. Colchicine is usually - I believe - used to treat pericarditis,could you also have had both? Sounds like you need a 2nd opinion to look at everything with fresh eyes and talk you through it. I really do think the BHFnurses will be able to help with explaining tests, meds etc giving you some answers. Or atleast questions to send to your cardiologist. Im really am so sorry to hear its so hard at home but your children sound amazing ❤️

[Helly75 in reply to HHH2017]

I will definitely speak to bhf nurses soon ,I'm not sure about pericarditis as nobody has explained MRI results, so frustrating! It's just hard going from being active to this & thanks I'd be so lost without my kids x❤

[Matthew_A_90]

Hi Helly,

I totally get how you feel. I'm only 4 months down the line from my diagnosis of acute myocarditis. This came as a massive shock and I still don't feel quite right/my old self. You know when you can't explain it, but you know in your body something isn't quite right!

As we know it takes time and everyone's recovery is different. Rest, rest, rest is all we're told and this can be incredibly frustrating. Especially if you were very active before. It's such a shame there is no formal treatment/cure for myocarditis. There is ongoing research and there are a few specialists across the country with an interest in cardiac inflammatory disorders. You can ask your GP to do a direct referral and bypass your local service if you feel they're not giving you the specialist care. A cardiac MRI is now considered gold standard for diagnosis with a repeat scan anywhere from 3 months onwards. But we know its a post code lottery!

You probably know more on this as its you're second time now. Feel free to private message me anytime. You'll get there.

[Helly75 in reply to Matthew_A_90]

Hi Matthew, thanks for the reply, I'm only about 6 weeks down the line & feel much worse than when I was in hospital! I had a cardiac mri 5 weeks ago ,cardiologist said he would send me results the same week but hasnt . I feel rubbish all the time & the odd occasion I dont & try to be active it sets me back again😣 I was very active & busy before ,working fulltime, now I'm not fit for any of that ,I'm rubbish at resting but my body says no anyway .

[Tomd158]

Hi Helly75I've been reading through all your comments, and just wondering how your recovery is going?

I'm in my 8th week of recovery from myocarditis (still having chest pain) and awaiting my MRI results

Hope your doing ok

Tom

[Helly75 in reply to Tomd158]

Hi Tom, I'm just over about 3 months & cant even say I'm recovering, I have chest pain daily & am basically a sloth 🤭 barely any movement I'm exhausted & generally unwell. Cardiologist says I need to see Rheumatologist to get steroids because my myocarditis is resistant. I hope your situation is nothing like mine & you get back to normal quickly! Keep checking for MRI results ,I had to pester to get mine ! Take care Helen

[Fruityfru89 in reply to Helly75]

I have just found this forum and your story Helly and I could not relate more if I tried !! I wonder what a rheumatologist can do for you ..

Sending you love x

[Stelvio]

Hallo allI have an autoimmune illness, now have heart involvement with ongoing chest pain - basically similar story to you all above, from active to couch potato. The reason I am responding to your posts, however, is that prior to going sick from work, and now will be retiring early, I was a medical secretary. If you have not heard about your results start by writing to the hospital consultant you were under to request the results. If you do not receive a response then contact the hospital PALS team (Patient Liaison Service); you can phone them via your hospital switchboard. They will help you chase your results.

[Helly75]

Hi Terry, sorry to hear you've went through all of that ,it takes its toll on us emotionally & physically . I've went through 3 years being told I was just anxious even had the menopause thrown at me ,I'm still furious at that one🤣. Trust yourself & your own judgement, we all know what's normal for ourselves & what's not. It's such a shame we have to be persistent in the first place ,should never be that way ,I hope you feel better soon x

[Terrywill12 in reply to Helly75]

Hi Helly, thankyou for responding. It's been a whirlwind of emotions since it all started in June. It's not only affected myself it's also taken its toll on my small family. I'm normally fit and well and work as a telecommunications engineer which keeps me fit and active. I feel like it's changed me as a person, I find myself very withdrawn from daily activities and I am still on sick leave. Anxiety level is through the roof. I've gone from being told it's anxiety to a heart attack and now myocarditis. New cardiologist is great though and has alot of time for he's patients. He has repeated tests and given clear answers to questions asked. Persistent chest pain and tiredness is the frustrating part of it all.

[Helly75 in reply to Terrywill12]

I'm the same with emotional side only I've had 3 years of it, I too was very active & working full time & have 3 children. It's a big shock going from that to being at home all the time, I still just cannot get over it all . I'm happy you've got a good cardiologist now,I thought I did too . The tiredness is something else isnt it?! I had 3 hospital appointments this week & it almost ended me ,as for the pain I always thought how can someone be in this much pain & not be dead or in hospital 😞 no meds seem to touch my pain

[Terrywill12 in reply to Helly75]

The medication helps a little bit but the anxiety probably makes it more intense for me. I am living in fear of a major heart attack because of it all. Google doesn't help either I've learnt that. The tiredness is the worst part of it all I think as like yourself I've gone from being active to not do active. I hope you get answers soon though. Do you have a regular heart nurse that could help get the results of your previous MRI?

[Helly75 in reply to Terrywill12]

No heart nurse & I was told I'd be having a repeat echo & an annual echo but according to records neither were ever arranged,I'm not happy about it either. I had the results of 1st MRI , small patch of inflammation was about it but as you know it feels so much worse than they describe. I was also told I'd had heart attacks but I didn't

[Terrywill12 in reply to Helly75]

I've been told now that I'll be having a follow up MRI in a years time to see if the heart failure is permanent or if it's gotten any better. I am also told that there is only a small area of the heart being affected however like yourself it feels alot worse. The trouble is, we can't see it so we don't know what's going on and drs tend to give us the short answer and send us away.

[Helly75 in reply to Terrywill12]

I'm glad you're having decent follow up ! I know what you mean ,the symptoms are very difficult to brush off or distract yourself from

[Terrywill12 in reply to Helly75]

It is very difficult. It's nice to see other people in the same boat as myself as I've felt alone with it all. I have friends and family saying oh just got get yourself out keep busy go work on your car etc. Easier said than done, I keep telling them it's not as easy and have to go through it to understand. As I say I feel like a completely different person from it all I feel broken. I've constantly panicked and went back to hospital and pestered which is why I've had all the tests under the sun, I can see on here people are having to wait for tests or consultants. My advice is just be persistent don't accept the wait. You have one heart and one go at life.

[Helly75 in reply to Terrywill12]

It's very easy for others to say what you should be doing because it's not happening to them & theres no way they could possibly understand it. I gave up trying to explain anything to anyone . On paper myocarditis & pericarditis sound like a minor inconvenience which they certainly are not. I'm an absolute shadow of the person I used to be because of it so I totally get what you're saying, but you're not alone anymore, theres lots of lovely people on this forum who will understand 🙂

[Terrywill12 in reply to Helly75]

Your right. This forum has been an eye opener for me today and reading other people's stories and talking to people like yourself has made this forum worth joining 🙂

[Helly75 in reply to Terrywill12]

You're very welcome here in this club none of us want to be in 🤣

[Fruityfru89 in reply to Helly75]

Hello, you’re absolutely right helly. You have hit the nail on your head by saying you are a shadow of the person you once were. It truly feels like that doesn’t it !

As well as the sudden presence of fear in your life and an over- awareness of everything your body doing. Tingling/ cold arm, heart palpitations, sharp stabby pains in heart, dormant but CONSTANT ache in the middle of the chest.

Complete fatigue and mental debilitation and frustration at not just average folks but even professional people being dismissive and saying it’s just anxiety or whatever.

I am so grateful to have found this page tonight. Thank you for sharing your story on here. Sending you love

[Pinky20J in reply to Terrywill12]

hi Terry, have you had your follow up mri scan? I have myocarditis and pericarditis diagnosed in May but still struggling with symptom flare ups so interested to know how you are now? Thanks

[Footymadmanc]

There’s a few of us all in the same boat Terry so it’s good we can all get together.

What medication are you on now? When you say feeling better every day, In which way exactly? My chest pain is still there but it’s so difficult to tell if it’s here better or less frequent.

I have another appointment with the cardiologist on the 27th. That’s 4 weeks since I’ve been on the colchicine and he said I should feel better and be able to work properly again then. If I’m not better I might ask for an MRI or another echo to see if there’s any improvements on the inflammation to my pericardium.

Hope you recover soon

[Terrywill12 in reply to Footymadmanc]

Hi footymadman, Thankyou for responding. I am now taking colchicine land naproxen for the pain relief. I was taking atorvastatin for cholesterol bisoprolol and ramipril for heart attack treatment. They have now stopped the statin and beta blocker as they have now said I havnt had the heart attack and it's myocarditis. I feel better as in my energy levels are rising and colour is back to normal. In regards to chest pain that's constantly there. Sometimes it's intense and most of the time it's a persistent dull ache. I still get tired very easily from showering or even walking up the stairs. They have changed the ramipril now too to another blood pressure tablet as I was getting a cardiac cough from the ramipril and body aches.

[Amy31H]

Hi helly75 sorry to bother you I just wanted to know with everything your experiencing does anything show when you have an ecg? I’m experiencing the exact same I’ve been sofa bound for 3 month now haven’t enjoyed Christmas with my kids at all feel so bad bit of a burden to be honest my ecg results are always normal I have a 24hr booked just wanted to ask if anything shows on your ecg results Thank you Amy

[BL567]

Hello Helly75,

How are you doing since your second diagnosis? I have just had my second bout after never thinking I’d get it again. Did these doctors ever say why you got it twice?

[Helly75]

Hi, still pretty rubbish to be honest. I have regular pain & feel exhausted a lot of the time . I think it's just one of those things ,just very unlucky to have got it again 😕

[HenreyB]

I have almost the exact same symptoms as you, this is my second bout of Myocarditis, first was at the beginning of the viral thing that shall not be named and my second started in January this year, no my heart rate is increases to 100+BPM when I stand or walk around.

Was an inpatient at Bristol heart institute this time for 3 days and diagnosed with Myocarditis, it seems to come back with viral infections that now almost always go straight to my chest which keeps becoming inflamed, with a tender mild pain when I laugh or cough.

So scary