myocarditis recovery

[lizzie1986]

I'm 5 weeks post diagnosis but still awaiting an mri. I just wondered if anyone else during recovery suffered with short, sharp chest pains. oddly they seem to start on the right of my chest or from down my right arm/armpit, occasionally they come from my bottom jaw . my upper back feels very tight and achey all the time and this radiates into my ribs. it's starting to really irritate me and there seems to be no particular time that it happens.

[Hidden]

I did indeed and they were different to the main pains which were pressure in the centre of the chest.

[lizzie1986 in reply to Hidden]

yes they are definately not like the main pain I had which landed me in a and e. I think I'm getting impatient and expect to be better by now but clearly my body has some healing to do. starting to get me down. I'm hoping there is no lasting damage

[Hidden in reply to lizzie1986]

I hope you don’t either. Manage your expectations on recovery, I am into week 12 on Monday. No one really prepares you for how long it can take. My bloods were all normal but the MRI showed some changes - I’ve no follow up and no explanation. I’m quite disappointed with the cardiologist

[lizzie1986 in reply to Hidden]

how frustrating! there seems to be very little information provided in terms of what to expect and speaking to the gp they know very little about it too. im not due to see the consultant until march and by that time i should have had an mri. i just feel stuck in limbo. im.not even sure when I'm expected to go back to work. I wouldnt know what to say to occupational health as I don't fully understand what the problem is.

[Hidden in reply to lizzie1986]

I wouldn’t return to work until the symptoms have gone. Hopefully your MRI will show no damage and you’ll fully recover

[lizzie1986 in reply to Hidden]

thanks for the advice.. it's good to speak to someone who understands as sometimes I feel like I'm just moaning for nothing.

[Hidden in reply to lizzie1986]

You’re welcome I have felt the exact same (still do a bit but I can see the end in sight!) good luck with the MRI results x

[gal4God]

I did but mine was due to a dodgy heart valve.

[HayleyAlex]

I was diagnosed with myocarditis 3 months ago. The lack of information about what the future holds is very lacking. Thankfully, the discomfort in my chest has improved. I still get tightness in my chest when I try to walk fast (anything above a very slow walk is now classed as 'fast'...!) or go up stairs or hills. But it does get better little by little and you need to find your own limits and stop and rest when you get any tightness or pressure in your chest. I returned to work this week, doing half days for the next two weeks to see how things go. I'm very lucky my boss has been so supportive.

I had my MRI 7 weeks after diagnosed myocarditis. I saw the cardiologist 10 weeks after and i have to say, my own GP has been much more helpful than the cardio department at the hospital. The cardiologist (not one that I had seen during the 6 days i was in hospital) just told me to go away and forget about it and get on with life..! I understand the need to move on but it wasn't very helpful when I wanted advice about what had happened and how to manage my future.

My GP has arranged for a follow up echocardiogram as it was this that showed the inflammation on the myocardium. He's hoping having this will show how much inflammation is still present and whether there's any damage. He has also been good at reassuring me that I will recover. I'm 57yr old female and before this, i was a fit, healthy person who walked a lot and swam twice a week. Its very frustrating having to slow down so much!

[lizzie1986 in reply to HayleyAlex]

thanks for the reassurance. it sounds like i need to be patient and not rush recovery and just see how it goes. I will certainly revisit my go if I don't get answers when I go back to hospital as im only 31 and have an 18mth old baby to think about too. sounds like this effects people in different ways and so perhaps why no one can give any good prognosis.

[Clairey37]

Hi. I can’t be much help with information as I’m a few weeks behind you in recovery but just wanted to let you know that everything you say sounds very familiar to how i feel. I also get pains in my back between my shoulders and I’m wondering if maybe it’s tension as I’m sure I spend my whole time tense waiting for a pain! I feel like life will never be normal again.

I don’t know what to say when people ask how I am anymore because I think they’re probably fed up of me saying ‘okish!’!

I hope you have some people around to help with your little one and continue to make a good recovery x

[Lovetheoutdoors in reply to Clairey37]

Saw your post from two years ago? How are you now? I was diagnosed in January with myocarditis. Took colchicine for 3 months. Then diagnosed with arterial fibrillation in March and now take blood thinners. Was feeling fine. Did some gardening Saturday and now have chest discomfort. Sprain, af or myocarditis ??

[Malice23 in reply to Lovetheoutdoors]

Hi both of you, I got diagnosed 5 weeks ago

I was wondering how your feeling now, are you fully recovered have you returned to normal life? X

[Lovetheoutdoors in reply to Malice23]

Hi tnere, I had an episode of AF in May but since then I've felt pretty good I've often sobered if my myocarditis was caused by covid though back in January that wasn t mentioned or thought about. But I had upset stomach, headaches before I was diagnosed with myocarditis and though I had three spells in hospital I was never tested for covid so I will never know. However the meds I'm on seen to have everything under control. Occasionally I still get slight chest pain, like a pulled muscle from doing ordinary tasks, like wrapping too many presents in one session! My cardiologist said he didn't need to see me for 12 months so I take it in doing ok. I keep busy walking and writing and fee!ing thankful that life seems ok xx

[Malice23 in reply to Lovetheoutdoors]

Surprised they didn’t test you.When I went to a&e initially the chest pain was worse with my breathing and where I have bad asthma I thought it could be related. They put me on the covid side of a&e which worried me and tested me twice within 20 mins of entering the hospital.

The first doctor told me I had heartburn

Then I had an ecg which was abnormal, then bloods which tronin was high and they told me suspected infection in heart I’d be staying in, no visitors allowed due to covid. Then I got told maybe I had a blood clot in my lung.

After ct scan & echo confirmed myocarditis and no clot in the lung.

What meds are you on?

I’m on colchicine

I’m 27 and scared this will never end.

I’m happy the meds are helping you and so positive that you don’t need to be seen for another 12 months

I had an mri but awaiting results

Xxx

[Lovetheoutdoors in reply to Malice23]

I was on colchicine for 3 months and told to stay indoors for 6 weeks after discarge, only to walk around indoors. Not that I could have done more than that. The pain was dreadful. My chest became inflamed and my throat. It hurt just swallowing my own saliva. I lost 8 lbs in a couple of weeks as could only peck at food. Odd I wasnt tested but covid was all new back then. when I developed AF I was put on anticoagulant which I think I will take forever. I'm also on another med to s!ow my heart rate. I feel really good now, ten months after the initial myocarditis diagnosis.I'm 72 so you're a spring chicken! This year it is 32 years since I had breast cancer and fully recovered though I did have a mastectomy at the time. I published my first book last year on Amazon! A romance where the main character had breast cancer had recovered and was hoping to find love.

I did! Despite being lopsided I met someone who loved me just as I am 4 years after my cancer diagnosis. Well, write what you know they say!!

[Malice23 in reply to Lovetheoutdoors]

Your an inspiration!! I am a spring chicken but without any spring at the moment haha

I’m so glad your feeling better and beat cancer, you go girl 💪🏽

Beautiful love story too 😢😍

What is your book? I’ll have a look

You’ve definitely given me more hope, thank you 💗

[Lovetheoutdoors in reply to Malice23]

My book is The Hideaway under my own name Jennie Cordner. All proceeds I'm donating to the ambulance service. They were so marvellous as we're the first responders who attended me. Hope you like the story x I lived in Pennsylvania for three years so that features in it too.

[Lovetheoutdoors in reply to Lovetheoutdoors]

Should be pen name! Spell checker working overtime!!

[HHH2017]

Hi Lizzie and everyone else, I am 4 months down the line and just starting to fill a bit more 'normal' I was hospitalised for 3 weeks where I had MRI, CT scans, ECHO's and Angiogram. My hospital care was outstanding but since being discharged the promises or close monitoring have been disappointing, especially as I have continued to be very ill.

I have experienced the pains you have described, I can say 4 months on these are lessening in occurance and severity now. Fatigue is still a big issue and I really have to pace myself and include rest periods in my day if not for an entire day at times. I am hoping to start a slow phased return to work at the beginning of March. My doctor advised today that I should not rush this and expects it to take until May if not longer before I can return to full time work. My next ECHO and hospital appointment to discuss possible long term effects is in June. I am quite anxious about this but take comfort from the fact that I feel mcuh better than I did a month ago so things MUST be improving with the old ticker!

My advice for those of you behind me in the recovery process is Don't rush it, Plan to have worthwhile rest periods following any activity and finally set yourself small achieveable targets. Good luck everyone. Jennie

[lizzie1986 in reply to HHH2017]

I'm pleased to hear you are making improvements. it certainly does seem to be a long road and we still haven't got to the bottom of what actually has gone off although I know my heart still isn't pumping properly. it's good to know there is light at the end of the tunnel! keep us updated with your recovery x

[Clairey37]

I’m pleased things are moving in the right direction for you. It’s baby steps that you don’t notice until you look back after a few weeks and realise the progress you’re making. Although I’m still waiting for my MRI I was feeling much more back to normal but I’ve managed to catch flu so now I’m lay in bed relying on other people. I’m hoping it doesn’t set me back and the myocarditis doesn’t mean it’ll take longer to get better.

[HHH2017 in reply to Clairey37]

Sorry to hear about your flu, claire I have been terriefied of picking up any other bugs and things incase it causes a set back. Hope you are getting plenty of rest and help to aid your recovery. x

[MarkInMancs]

I found this thread when googling Myocarditis Recovery, - I was beginning to think there was no information out there...

I’m on week 6 from when I was hospitalised and feel really frustrated at how slow the recovery seems to be.

I find I get really tired with even minor exertion (eg walking up stairs, even talking too much).

I have also been getting tight chest pains and shortness of breath, particularly when stressed (which with 2 young boys is frequent).

My GP didn’t really seem to know much about the condition. The cardiologist was very vague about what to expect - I think there’s maybe a big variation in recovery times,

There’s also a viscous circle where the condition makes me anxious and the anxiety worsens the condition.

Apologies for jumping on an old thread, but I guess there may be more people like me finding this in the future.

[lizzie1986 in reply to MarkInMancs]

it is very frustrating as like to.u say the gp knows every little and the cardiologist you dont see from 1 month to the next. i think an acceptance that things will take time helps keeps your head straight. since being diagnosed with myocarditis i had a mri scan which altered the diagnosis. this is still being investigated and im still off work 6 months on with a cocktail of drugs to go with it. take it easy and keep an open mind about tour recovery. you will get there.

[MarkInMancs in reply to lizzie1986]

Thanks Lizzie. That makes sense. Hope you are doing ok.

I’m gradually getting *my* head around it, but I think it’s hard for my immediate family.

I look as ‘normal’ as ever, but I can’t do all the usual stuff so that’s all falling to wife instead and she’s understandably struggling. We have 2yo and 5yo boys who are always a real handful but I hadn’t realised just how physical it is looking after them. I can’t seem to last 5 minutes before feeling exhausted and getting chest pain.

I think we’d just assumed a couple of weeks would get me back to normal, but it’s not panning out like that so far.

[Malice23 in reply to MarkInMancs]

Hi, how are you now? Very old post but I got diagnosed 5 weeks ago and want to know other peoples stories. I’m 27 and it’s getting me down, I was so independent and now I struggle with the stairs 😞

[TimiK]

I had viral myocarditis almost 6 weeks ago. I feel everything you all mentioned. I think I might be starting to have anxiety that it's something else is going on. I don't have any follow-up planed with cardiologist (he said to rest for a week.. Lol) my gp says to be patient and rest. Gave me beta blockers for the palpitations and anxiety but I think the propronslol is making me worse, so I'm going to try and come off it after 2 weeks of being on it. Anyone here who has come out on the other side of myocarditis and can give some reassure. Timea

[nekeefe]

I was diagnosed with Myocarditis at the start of April. Skip to the last two paragraphs if you just want the questions and not the back story!

I am (was) a keen cyclist and was noticing chest pains when going up hills. It steadily got worse, to the point where I was in pain for the whole ride except for the first few minutes. I went to the GP, who suggested A&E and went straight from there to Cardiology with a suspected heart attack! My troponin level was 540 and I was given ECG, EKG and angiogram within 24 hours. My tests were fairly positive, like Hayley, I was told to just get on with life, one of the consultants said it would pass and admitted that they sometimes just don’t know what is wrong.

From doing some research, it seems a very hard condition to diagnose and ends up as a “catch all” kind of condition. It’s very hard to prove what's causing it, requiring evidence of an underlying condition or a large number of heart biopsies (17 biopsies would give a 90% chance of identifying the cause). This means they are limited to very broad treatment for pain and inflammation. The first set of doctors just said no exercise for a month and didn’t even tell me they thought I had myocarditis. Something I only found out by getting access to the more detailed discharge summary they gave to my GP.

I’ve tried to rest, but it’s very frustrating. I’ve learnt to avoid alcohol and walk slowly. Even then, I get breathless going up the stairs and am very aware of my heart last thing at night. I ended up back in A&E with palpitations and ectopic beats few weeks later, apparently neither being a concern. The second set of consultants seemed a little more engaged though, prescribing some basic drugs and referring me for an MRI (in five months time) and changing my diagnosis to Acute Myocarditis.

I’m lucky that I work from home, at a desk, and I feel fine when just sitting here but do wonder what the long term diagnosis is. Will I fight off whatever is the underlying problem? If I do, will my heart fully recover? How long will it take? Is it worth booking a private MRI?

It would be great to get some feedback from the people on this thread who were diagnosed some time ago to find out where they are now?

[Heartandy in reply to nekeefe]

I’m new to this forum so just reading through some old threads. Keen to engage with people going through a similar experience.

Like you I’m frustrated by the need to rest. I’d just bought myself a new bike before I had my first myocarditis cardiac issue last October. After various MRIs and drugs I thought I’d recovered only to have further chest pains and diagnosed repeat myocarditis a couple of weeks ago. Not sure what future holds .....

Regarding you the MRI should hopefully help in terms of extent of inflammation and whether it has stopped and, importantly overall heart function. I too had pains and shortness of breath for a few months after first event even though my heart function was confirmed normal.

[nekeefe in reply to Heartandy]

Hi Andy

I went for the private MRI in the end. It confirmed that I didn't have myocarditis as it picked up that there was no inflammation. Instead, it found a couple of clots on the heart interior. Theory being that they were formed by my bicuspid aortic valve and broke off (I think maybe in the original angiogram) and ended up on the heart wall. I'm on blood thinners (four weeks so far) which should break them down but really feel no different to how I felt at the start of April. I hope they break up and that the heart wall then recovers, neither of these events are currently certain.

Hope things go well for you, is it definitely myocarditis? What did the MRI pick up?

[Heartandy in reply to nekeefe]

Good that you had an MRI to help diagnosis.

I had one MRI back in November last year which showed inflammation in the left ventricle wall. A repeat MRI in March showed that the inflammation had gone but replaced with scarring (as predicted). Now with the repeat event, the cardiologist is certain this is again myocarditis but they can’t find any reason for the recurrence. As you may now know more research is needed into why some people are effected and others not. Recurrent myocarditis is often related to auto immune system so i’m being referred to an auto immune specialist. I’m now off work (as last time) but the cardiologist is describing this repeat as a “life changing event” and recommending I think about a change in job (it being fairly stressful) so need to think carefully about that.

Hopefully, for you, the blood thinners will work. I wonder if blood clots can be picked up in an echocardiogram (probably not but might be worth asking as a more straightforward confirmation that they’ve gone). As for ongoing pain, I suppose that would be related to, as you say, heart wall or valve damage and should improve with time?

Best of luck.

[nekeefe in reply to Heartandy]

I went for a private MRI in the end because a consultant said I needed an MRI and suggested two would be better, one now and one in a few months. They suggested they might be able to get me one for the next week, I then got a letter from the NHS....October (this is back in May). So glad I paid for one though, given it picked up the problem and also good to know I have another one coming up, so they can see if the clots are getting smaller. I think the medication I'm on is fairly cautious but do appreciate they need to break up slowly, to avoid the risk of a stroke, pulmonary embolism, etc... If you're going to have clots, probably the heart is the best place as it has the space to house them.

I did have an echocardiogram and it didn't pick them but maybe another would, as they know what to look for. Most of the scans look pretty grainy to me.

I was diagnosed with myocarditis for multiple months so did look into it, as you say, it's poorly researched. It strikes me that so many things can cause it and as a heart biopsy has risks they tend to ignore what the cause was and rely on your body to fight it off. I'm not sure this is a great approach, especially if it comes back, were you aware of any illness around the time of your initial diagnosis?

Amazing how you tend to take health for granted isn't it? Would love to get back on that bike, sadly, a walk of any length is a challenge enough most days at the moment.

[Heartandy in reply to nekeefe]

No sign of any Illness or infection before either event. This time they tested for every virus and bacteria they could think of even the more exotic ones but all tests were negative. Seriously considered a biopsy but expert in Birmingham (expert in heart muscles and would have done the op) said the risks outweighed the benefits. Also because of my blood results, positive diagnosis through MRI and the fact that my myocarditis isn’t progressive, they thought it unlikely to change my treatment plan. So I’m left with “there’s something about your immune system that means you’re more susceptible to repeat myocarditis”. Pretty unsatisfactory but I’ve come to accept that medicine is more of an art and less of a science than I’d thought! I’m lucky to have private health insurance through my work so will see the cardiologist again next week and he’s also referring me to an auto immune specialist .....

Yes I’d taken health for granted. No health issues in past and pretty fit so this has all needed a bit of adjustment. I’m supposed to be doing the coast to coast next May - I’m still clinging on to the hope that I can get back to exercise and train sufficiently to do that. We will see...

Good you’ve got a repeat MRI, fingers crossed that shows the clots have reduced or gone. As you say there’s a need to be patient. Last thing you want is the clot or pieces of clot travelling around your body.

[ADAT73]

Hi, do any of you that were posting last year have updates on your recovery? Hopefully you will now be looking back on your experiences. I am 3 weeks post diagnosis and don’t have a clue how to start rehabilitating. Was discharged from hospital after being in for a week with no info or advice and just told to see my GP if any problems. The more I rest the worse I feel- the rest advice has been drummed into me by a colleague who is an ex-cardiac nurse. When I did try and do a few things the following day I woke up with chest pain like I’d pulled a muscle. Struggling to differentiate between myocarditis symptoms and anxiety. Any advice appreciated. I’m not on any meds and would probably class myself as having a milder case of this.

[nekeefe in reply to ADAT73]

Hi,

Recovery sounds very variable, be great to learn from someone who is out of the other side. My consultant started to switch tack to coronary artery spasm, so much did I moan about chest pains but a second MRI indicated much more inflammation in the myocardium along with evidence of heart failure.

I'm now on appropriate meds (beta blocker, diuretic, ACE inhibitor, anti-inflammatory) so can only hope I start to get better, it's been steadily downhill for the last 10 months leading up to now.

From talking to various sources (doctors, charities, internet) it seems like very light exercise might be beneficial but I really think this just means slow walking on the flat. Nothing that substantially raises heart rate or causes any pain.

The first time I was in hospital I was discharged with no meds, think their feeling was that I was fit and most people get over this quickly so no need to worry. I would push on that tbh, meds might be critical and they almost certainly won't be a backward step. It sounds like a condition which affects the fittest most, as their bodies overreact to the initial infection and cause a worse problem!

[Malice23]

Hi Lizzie, It’s been a long time since you posted and I wanted to ask about your recovery ?

I was diagnosed 5 weeks ago with acute myocarditis. I’m 27 and feel awful. I get all the pains you describe, I have good days and bad days. Stairs are still a struggle most the time.

I was so independent and now I can’t even stand to make my dinner, lucky my bf has been very helpful.

Been given a lack of information like you all it seems and I don’t know if I’m at where I should be. Consultant told me I’d be at work fine within 2 weeks now my gp has told me I can’t drive or do anything for at least 6.

I just want to be able to do things, I can’t walk my dogs or walk to the shop. It’s sad getting me down.