diagnosed with myocarditis 7 weeks ago

[Sarahjane444]

Hi all and thank you in advance for reading.

I am a healthy 34 year old woman and was admitted to hospital 7 weeks ago with severe chest, jaw, back and arm pain. Very scary!

My troponin levels were 208 so they kept me in for 3 days. All other tests - ECG, echo and CT all clear. I refused an MRI due to claustrophobia. I’m on 3 months of Colchicine and also taken codeine most days as well as ibroprufen and paracetamol when needed.

i took 4 weeks rest as requested by the cardiologist and I’ve gone back to work now (I’m a dog walker) but have reduced my walks to 1-2 a day and only walking slowly. I haven’t gone back to the gym and not planning to until I’m atleast a month clear of no pain.

one day I’ll feel ok and the next I’m in pain again in my chest. It’s so frustrating. Is this normal for it to be so up and down? Also the colchicine is playing havoc with my digestive system! I hate this and my mental health is really suffering mainly because I’m not in the gym which helped with my anxiety. I just want to get better but I have to work too! Plus I’m really scared, the pain worries me so much.

thank you x

[Heilung18-Gesund]

Hi Sarahjane,

I am very sorry for your plight but can empathize, having had the same.

I was unable to tolerate colchicine plus NSAIDs.

My MD instead started me on very low doses (I have low blood pressure) of cardiac drugs that also have antiinflammatory impact: beta-blocker, angiotensin receptor blocker, SGLT2-inhibitor.

I am much improved but still exceedingly exhausted. It may take 6 months or more to recover from myocarditis. You do need to rest, but try to include careful exercise rehab as tolerated.

All the best,

TB

[Westie2012 in reply to Heilung18-Gesund]

Hi Sarahjane , I’m so sorry to hear you’ve been through and are still going through a tough time after being in hospital , I haven’t had myocarditis but I did have pericarditis and a pericardial effusion , I really know how bad the pain can be and it’s scary , it does affect mental health aswell . In the early days and weeks following my discharge from hospital if I did too much some days then the next day or so my pain would be much worse , I learned to take my pain relief regularly to try to keep the pain under control , I did speak to my gp ( when this happened to me it was early 2021 so it was phone appointments at the time ) , I was given strong pain relief which I think was tramadol to take with paracetamol so I could take something every two hours , i had to try a few different types of pain relief to find something that worked , I was also on lansoprazole ,colchicine and 600mg ibuprofen . The colchicine really upset my tummy, when I was first admitted to hospital I was immediately started on three a day , let’s just say I should have slept in the bathroom as I needed to go a lot, a nurse asked if I was ok as they’d seen me going to the bathroom a lot. I was then put on one tablet half a day then built up gradually to being able to manage two a day with no side effects , that was while I was in hospital so the dose was as instructed by the nurses and drs on CCU . I had to rest completely for a few months to avoid developing chronic pericarditis , regarding your pain and the side effects of colchicine can you speak to cardiology or your gp ? It took me at least four months to feel the pain had lessened , it was a very long road to recovery , I found it very difficult physically and mentally . I hope you soon feel better but as I know it takes a while to recover from this condition , I’m always here if you need to talk , I found this forum so supportive at the start of my cardiac problems and still do , I joined pericarditis support groups on another social media platform and I know there’s groups for myocarditis too , they were so helpful too being able to ask others who had also had the same condition , knowing there’s others that know what you’re going through really helped me not to feel so alone with my health . Take care, sorry I’ve rambled on a bit , sending a hug x

[MummaSoap]

Hi Sarahjane, welcome to the forum! I’m sorry to hear about your recent experience, the early days can be quite tricky to navigate in the early days; be kind to yourself and I just wanted to say well done for recognising the impact this situation is having your mental health. You’re not alone, many of us have experienced some form of mental health impacts along our cardiac journey.

I haven’t had myocarditis but I have a heart condition and I’m in my early thirties too so I sympathise with going through something like this at our age.

You’re doing the right thing by listening to your body, it’s a difficult balance to strike when you have bills to pay but as you’re heart is a muscle, you’ll hopefully be able to build yourself up to what you were doing previously.

I would suggest that you contact your GP at the very least to discuss the ongoing intermittent chest pain to ensure there’s no other cause for concern.

Keep us posted with how you’re getting on.

Best wishes

Soap 🧼

[Sarahjane444]

thank you everyone for your kind comments and words of wisdom! I agree, it’s such a scary thing to go through and even harder to get your head around when you’re still relatively young. About a month ago I had a whole week of no pain and thought yes! Im improving but after doing some gardening that weekend my pain came back tenfold. It was so disheartening. I have times when I feel so frustrated I just want to cry! I know you can all empathise.

Im on 3 x cochicine a day, docs told me to reduce my dose to 2 a day and 1 400mg ibroprofen but it didn’t make a different to my stomach cramps. And then I worry about taking all of these meds (codeine too) and that I’ll get stomach ulcers from it all. Before all of these I didn’t take any tablets for anything, I like to be as natural as possible so my body has had a bit of a shock!

My periods are up the creek too, I don’t know if anyone else experienced this?

I’ve had a couple of appointments with my GP and cardiology since being discharged and they said pain is normal but I do find it strange how it can come and go. One day absolutely fine and then in pain

I’m still working/walking the dogs but just taking it easy. It’s hard when you have to earn a living but have to rest at the same time.

I hope you’re all doing ok and thank you again for replying x

[Captain_Birdseye in reply to Sarahjane444]

Hi Sarah,

I was 34 last year whe I was diagnosed with myocarditis as well... I'm off into work now, but if you click on my profile and read my previous posts, you'll see my story if it helps.

Short version is that I didn't start to feel better until 7 months posy diagnosis, then got a bout of pericarditis which is improving now!

I'll try to come back later with a longer version... but recovery isn't always linear, it can be quite up and down, and it's so important to rest completely... I went back to work too soon and it hindered my recovery according to the doctors. It's also good to note that some folk take months to recover, some only take a few weeks - it's different for all of us.

[Sarahjane444 in reply to Captain_Birdseye]

thank you, I’ll have a read through your posts. I look forward to hearing back from you. Have a good day

[Captain_Birdseye in reply to Sarahjane444]

At least the weather is nice now lol.

The disruption to your cycle may be due to the shock and stress of what your body is going through with both the heart and the anxiety, and I swear the anxiety is almost as bad as the myocarditis!

Painkillers and colchicine (colchicine isn't a painkiller, it's an anti inflammatory but not an analgesic) are hard on the stomach. If you can get a PPI (gp can prescribe omeprazole, or can buy at a pharmacy) if you can tolerate them.

Like you I barely took pills for anything unless I had to, but here we are... it's a shame you can't have the MRI as this is the only way to tell if there is active inflammation or scarring on the heart, but if your other scans are clear at least you know there's no major damage despite the high troponin.

When the initial event is over, the pain becomes quite intermittent, you need to be careful because it's easy to think you're better, try to get back to normal... then you overdo it and end up back at square one.

For myocarditis, the textbook says 3-6 months recovery so it is worth maybe preparing yourself mentally for this, although as I said before, some take longer, some are super quick. The young and fit can recover more quickly, but again, some not all. Some advise keeping the heart rate below 100bpm, which I tried to follow, but to be honest it might be a bit of an old wives tale.

There's no cure except rest, convalescence, and more rest, although we can try to manage symptoms with anti inflammatories, painkillers and beta blockers to keep the heart rate level.

The important thing to remember is that the heart has had a shock... if this had happened to any other muscle on your body, you would let it rest. The heart can't rest, but we can try to make it's job a wee bit easier.

[Scho1]

Hi, sorry to hear you are suffering from this illness. I suffer with pericarditis and have done for 17 years now. Colchicine can be very hard on your stomach so usually a PPI such as Lansoprazole is prescribed alongside.

I also find it gives me adverse liver and kidney readings so have my blood monitored regularly.

It might be worth speaking to your GP or cardiologist if you have not been prescribed a PPI.

On another note you could join the UK and Ireland pericarditis group for support too.

[HHH2017]

Hi, Im sorry to hear you have also had the awful illness. The recovery period can vary dramatically for each individual as severity of the illness also varies. I was in hospital for nearly 3 weeks, 2yrs recovery and left with permanent damage but this is quite unlucky/unusual.

You are already doing very well 👍🏽 What we often mention on this forum with Myo & peri carditis is that it can be one step forward and 3 back during recovery. REST is soooo important. Your bad days may be down to doing a little too much too soon sadly. Its so easy to have a good day & think great I can get on with life & bam you pay for it the next day! You are doing great managing your pain relief and still getting some exercise - I do worry though that dogs pulling might be a cause of additionalstress on your heart/chest muscles though. Do you think any of your clients might be ok with you playing in the garden with their dogs for a while rather than walking? I totally appreciate your need to earn but might this be a compromise to help your heart heal? Your heart has had a nasty shock and like any muscle needs time to rest & recover. Try not to be hard on yourself or worry bout set backs unfortunately these are natural but you are doung great & will get back to the gym in time. Also your gym should may have someone running cardiobrehab classes who it might be worth having a chat with when you are ready to restart 👍🏽 Wishing you all the very best.

[Sarahjane444 in reply to HHH2017]

hi! Thank you for your reply. How are you doing now?

Luckily the dogs I walk are all off lead and therefore don’t pull they are as good as gold. I have however decided to take a Friday and Monday off so I can get a good 4 day long weekend of rest and just work 3 days going forward. Luckily I have a team of ladies who can cover for me.

I also am now thinking of getting an MRI. Before I had Myo I had had off and on chest pain over 3 years. Since my dad passed (it was an awful and traumatic death - suicide) which caused me so much pain. Since then I started having chest pain, mainly during the winter months which was odd. They would last for 5-10 days and then disappear. I would also be short of breath the day before the pain came. Then April this year I develop myo from the flu. There may be something underlying?

Today hasn’t been a good day… was out walking the dogs and felt so weak and dizzy. Pins and needles all in my feet and arms. Back in bed now and taken some more painkillers. Honestly my poor body 😩

Thank you for the advice. It’s really appreciated

[HHH2017 in reply to Sarahjane444]

Hi, Im so much better now 👍🏽 I have a new 'normal' life. I took early retirement from teaching and just do a couple of sessions a week now. I can't run or walk upa mountain but I play with my grand children, swim and walk my sons dog 3 times a week so Im happy with where I am. Yearly (approx) check up with cardiologist keep an eye on me😊

I would definitely encourage a mri. I was partially sedated for mine and the staff were soooo kind, as I too am very claustophobic. It found a valve issue I had not been aware of & not shown on any other tests so well worth having.

Im so pleased to hear you are able to change your days & take more rest time. Hard managing health & finances Im sure but long term it will greatly benefit you Im certain. Lovely that you have a good supportive team too. Do keep us informed of how u get on & test results etc 🤞🏽REST & enjoy those lovely doggies - the dog walking is also so beneficial for the soul 🐶

Border collie called milo

[HHH2017]

PS don't be too upset or anxious about the bad days there will be some. But you've listened to your body and bed rest is the best 👍🏽👍🏽👍🏽

[Sarahjane444 in reply to HHH2017]

ah thank you so much! I will keep you posted and definitely ask for an MRI 😊

[JS1001]

hi, how are you now have you any updates ? Did you manage to get an mri? Currently going through similar