Still having the worst pain after almost 5 months, heart rate & rhythm all over the place ,I cant lay down or seem to settle . Many visits to A&E last time they said I'm wasting time going there. At this point I'm that scared I'm having panic attacks & crying all the time,I dont know what to do
Myocarditis : Still having the worst... - British Heart Fou...
Myocarditis
Written by
Helly75
To view profiles and participate in discussions please or .
63 Replies
•
I wonder if gallstones could be causing your pain? Have you had a scan to see?
Hi ,I have no gallbladder, I had a chest & abdominal ct scan not long ago so I'm terrified waiting for the results of that too, just that awful feeling something is wrong & whatever I try doesnt help
Hmm, let me think.
I was getting constant soreness in my chest and on another forum on HU someone asked me if I ate yogurt. Well I did, plain natural yogurt. I stopped it and my soreness went just like that! Please say you eat yogurt and that can be your cure!
Hahaha!😂 I wish it was yogurt ! That would be an easy fix
Oh no, I'll have to give up! Let us know if you get the results of your CT scan please.
Jean
Will do ,thanks very much Jean
MilkfairyHeart Star
Hello Helly75,
I had myocarditis several years ago.
Mine overtime resolved.
I also now live with vasospastic angina. The chest pain I feel after a severe vasospasm is similar to my myocarditis pain. My heart feels bruised.
It feels like an imprint of pain, a dull ache over my heart.
The inflammatory process that takes place with myocarditis and pericarditis can take a while to get better. You can have flare ups too.
Sunnie2day has a great deal of experience of living with pericarditis a related heart condition. Hopefully she will be along to add her words of wisdom.
There are a few other forum members who also have a lived experience of myocarditis and hopefully they will be along soon.
That's exactly how I feel ! An aching bruise that feels worse with movement & I'm having big spasms ,I'm just terrified at this point ,thanks for the reply
I am still here after 9 years!
Have you got a follow up appointment with a Cardiologist soon?
Sometimes I have found that some healthcare professionals, underestimate just how painful myocarditis and coronary vasospasms can be.
Follow up around October by phone ,they dont seem to give a hoot about that sort of thing ,he said hes sending me to rheumatologist for immunosuppressive treatment ,that terrified me too
I have been recovering from acute myocarditis sibce Feb 2020 - consultants just keep telling me the recovery takes up to 2 years for myocarditis and 6 months had it been pericarditis - however I also have costant pain not only in my chest but also my tummy and lower back - doesnt help that since the episode of acute myocarditis last year I have had chronic diarrhea - my GP now just dismisses any aches or pains I report as they put it down to my recovery ...which they say can take up to 2 years - however please dont ignore anything that you feel or anything that doesnt seem right - as I woke up couple of months ago with again severe chest pains and pains in neck left shoulder and back - after I begged them to investigate further and not just assume it was inflammation of my heart they discovered my liver was failing (I have never been a smoker or a big alcohol drinker) this is all very scary and I hate to be the cynic but ita as though the doctors and the research carried out on this is not enough and they appear to think a lot of this pain is in our heads (I am still working albeit through gritted teeth but I wont give in to this) so do get angry when the doctors think some of this pain is in my head and I want an excuse to have time.off work ....I juat want to get back to normal as I am sure you do too Helly75 - this illness isnt nice to live with - as if you had had a heart attack they give you rehab if you suffer from this then you are expected just to carry on and not look for resolution to this awful illness! Sorry for the rant - but a viral infection/inflammation appeara to be the issue for my suffering initially in 2020 and I have now had my heaet affected, liver and my bowel ...this i not going away ..
So sorry to hear what your going through, I've been like this for 3 years now & thought I'd gone insane ! After the 1st time in 2018 I started to develop multi system issues that made me look more insane to drs but this time I'm getting help but still not convinced lol we will see what happens 😞
I’ve just returned from hospital having had this relating to Covid. I’m still on the steroids and drugs from it which make me feel really spaced out and unable to do anything. I’ve taken the last this morning so I’m hoping to see some improvement.
I often wake with panic breathing since this and need to take 20 minutes to calm myself
Hi Helly, I’m so sorry you’re going through this. I had myocarditis for 8 months. Fortunately I’ve made a full recovery but I did have a vasospasm thing once and went to A&E. I am most concerned about your mental health you sound terrified beyond words - stress has a real and present affect on health including your heart. Are you able to access any counselling to cope with the uncertainty whilst you await results etc? I really feel you need help coping x
Helly75• in reply to
I bear, I can remember speaking with you at the start of this ,unfortunately things seem to be getting worse & I've been admitted 3 times , my mental health is destroyed because of fear & worry . I'm not coping at all
• in reply toHelly75
Can you speak to your GP about some mental health support to try to help you cope? I think rheumatology is a great idea they can look at the inflammatory process. I have a rheumatologist and he’s the absolute best. They can’t make you take anything so please don’t panic about immunosuppressants. Wait to see what they say when they see you. Try to rationalise - you’re getting seen and there are possible options. Do you have that nitrate spray thing to try if you have the severe sudden pain? If those are vasospasms it works really fast. Try to just deal with one thing at a time. I wish I could help you more
Helly75• in reply to
My gp knows the state I'm in ,shes stuck knowing what needs to happen & not being able to make it happen, I had antidepressants but had a bad reaction & was very unwell . I'm just worried about the steroid thing because of what that might do to me & the risk of covid
• in reply toHelly75
You don’t have to take anything first off. I’d wait and see what the rheumatologist says. I don’t think you should be on antidepressants- it’s not a chemical imbalance it’s external events. There are other medications and options if it is inflammatory (which it sounds it)
Helly75• in reply to
I agree about the antidepressants ,I dont do well with them ,the cardiologist contacted rheumatologist months ago so I've no idea if I've joined a waiting list, if that's the case I wont see her this side of xmas ,I will hopefully speak to gp tomorrow
Hi, I had myocarditis and pericarditis back in November and was given a gout medicine which I could only take for 12 weeks, a scan had shown scar tissue that I'd had them several years , I'm regularly in and out of hospital usually they say the pain is from gastritis but the last time I was told it could now be from scar tissue, my HF nurse is pushing for answers and I'm due a scan when I meet the transplant team at the end of the month
Hi, I'm taking the same medication which has made no difference ,I get the gastritis excuse all the time too ,I'm sick of it all at this point
I really do feel your pain, I've now started questioning myself, and taking longer and longer before calling for an ambulance to the point now where the last time was 4 days......and I had one hell of a telling off by the paramedics, as I've so much going on I shouldn't risk anything....
I've reached the point where if I go to A&E I'm actually embarrassed, last time a doctor told me I'm wasting time going there & to see my gp ,dont even know what to do anymore
Totally understand, now I've got my HF nurse trying to find answers....it's not just the emotional stress but the physical stress it's putting on the heart..
The stress of not being listened to I think hurts the most ,they think I'm a hysterical hypochondriac when in reality I dont actually want to be near any hospitals, drs or gps ,I want to feel better & not be in pain
I am so sorry you feel this way.
It took me a while to get my vasospastic angina diagnosed.
I had a specialised angiogram which shows I have vasospasms.
I felt that nobody believed I was in so much pain. In some cases my pain wasn't treated at all. This effected my mental well being.
Your pain is very real. Please don't let anybody say it isn't. You are absolutely not wasting any of the staff's time in A&E.
As others have suggested ask for some counselling. I was lucky I was able to see a Cardiac Psychologist.
I really hope you find the support you need to help you soon.
So sorry everything is so bad for you Helly75. It sounds awful, poor thing. But your extreme fear, I'm afraid, is exacerbating your condition. It's bad, yes, but it's not that bad - they are investigating, you will be able to discuss matters. You want them to believe in you, but they do, you know. Believe in them, they'll get there, you will be helped. And believe in yourself.
You have much to contend with, the suggestions of accessing some support are good.
Very best wishes, lovie. 🍀
Thank you ,I know you're right ,fear has a solid grip on me for sure 😣
Have you not had an echocardiogram or ECG? A 24h Heart monitor or any other exploratory treatment?
I had an echo in april & cardiac mri, I've got steadily worse since then
Hi Helly, so sorry for your situation. A few snippets in case they help.
There is an excellent Facebook group for myocarditis, where you could pick up lots of tips from fellow patients. I joined the pericarditis one, and learned a lot. They also have rheumatology threads & comments on steroids & newer medicines that may inform & ease your mind.
My biggest learning was the extent of the rest I needed to take, in order to heal. The heart does not get to ‘stop and rest’, so to allow it to heal, we need to keep our heart rate as low as possible. I was mentally so keen to walk in the fresh air etc, but I found I got way less pain & fewer breathing problems if I did nothing, miserable though that felt. It was worth it, eventually things got better.
Secondly, you can self-refer for counselling under the NHS, you don’t have to wait for the GP to refer you. If you’re interested, here’s a link: nhs.uk/mental-health/talkin...
I’d thoroughly recommend counselling, it got me through the worst of the mental anguish and I was able to build more emotional resilience. My heart still scares me, but I am able to see it in a different light now.
Third, there is a growing understanding of inflammation in the body and how much it relates to the gut. I am not suggesting your pain is gastric, far from it. What I learned is that inflammation in one part of the body is mirrored in other parts simultaneously. And that easing in-noticed inflammation in the gut can affect both the brain and the heart positively. So I tried what’s sometimes described as a “clean” food plan, with fewer inflammatory foods. My gut didn’t change too much, but it was slightly positive. My mental health (my mood) improved enormously and my heart seemed less sensitive to going up the stairs etc. Now I notice if I don’t eat clean for a long period, all three (mood, heart, gut) all seem over sensitive.
Lastly, if you can afford it, or have medical insurance, could you consider a one-off private cardio consultation, with a myocarditis specialist? You could find names from the Facebook group (I found a pericarditis specialist at Brompton hospital from there). That may be worth waiting till after the rheumatologist.
I wish you rest, luck & healing, and a huge dose of mental well-being.
Helly75• in reply to
Thank you for such a lovely message 😭 I dont have Facebook though . I do have lots of tummy problems/gastritis which they try to fob me off with a lot but I know I'm having heart pain . I know what you mean about the rest thing ,my body is just demanding that I stop even after such silly things like having a shower I'm wiped out ,I will def look into self referral, thanks for your kindness xx
You can sign up for fb and keep everything private. Mine can't be searched for , doesnt have a profile photo and all info is private( only i can see it) Use your first name and then perhaps a middle name. That way you can access pages you are interested in for information.
Thank you , I absolutely hate Facebook 😂 but I'd consider it for the support xx
So sorry to read how you're feeling. I had myocarditis January 2020. Took gout medication for 3 months. But took ayt least 7 months before I felt much better. I developed atrial fibrillation in the May whi h was v painful. As bas as the myocarditis when I had the first episode. I've totally given up alcohol for the past 18 months and don't intend having another glass! Also on decaffeinated tea and coffee and stopped eating bread. I also don't go rushing around at everyone's beck and call now as the stress brought symptoms on. I now take candesartan 8 mg. Atorvastatin 10mg. Indapamide 2.5 mg. Omeprazole20mgs and apixaban 5mgs. I was on adizem till last month but thankfully cardiologist stopped that. Gave me terrible heartburn and some confusion! I haven't had an af episode for 12 months thankfully although I understand can come back any time.
My best investment was a cardiologist monitor £99 which shows when/if I'm having an af episode and also showed up couple episodes of brachycardia. But it's reassuring to use and take print offs to show cardiologist or send them to gp. When I first had it I was over zealous in using it but now check if I'm unsure a d need a bit of reassurance which is hardly ever.
It's not a nice journey we find ourselves on but I hope you get all the answers you need soon and all the support you deserve x
Thank so much for the reply , I also am taking colchicine my gp put me back on it again & very high dose ppi meds . I strongly believe that I have some sort of arrhythmia. I had what I was told was mild myocarditis in 2018 ,cardiologist at the time said nothing was wrong with my heart but I didnt get better ,happened again in april this year & seems to be worsening & I have to see rheumatologist, thanks again for your kindness x
Hi Helly just came across your post and I was interested as I’ve had very similar problems, I was told back in January I had heart failure after an echo showed I had left ventricular systolic dysfunction with a mildly reduced ejection fraction of 40-50% and abnormal septal motion. I was put on ivabradine and ramipril and basically left to wait for a cardiac stress MRI. The NHS waiting list was so long I decided to self find and go private and in May I had one.
It came back my heart function was normal, with no systolic impairment or scarring, no cardiomyopathy or heart failure. They don’t know what caused it to happen but they think possibly a virus. I remember last year in March I had a viral infection not sure what it was GP told me that but I got better then in October I had COVID so they feel it may be that a viral infection caused my heart failure. I wonder whether I had myocarditis as that can be caused by an infection.
Like you it has caused me massive anxiety I kept going to my GP and a&e through December last year and they made me feel so small and stupid I was known to them I had so many trips there so many blood tests so many ecg’s till finally after being took there on New Year’s Day they referred me for the echo which showed what I had. My GP kept telling me in December I had anxiety and that’s what the problem was, I feel so angry and let down.
He put me on propranolol to begin with 16tg if december I started taking that but I felt awful on it he prescribed it me 10mg 3x owt day and said it helps with anxiety at lower doses all it did was make me feel 10x worse, cold hands I felt like a zombie couldn’t eat couldn’t sleep. I lost a lot of weight through December and January I looked so ill. I stopped taking the propranolol end of December and thankfully after being rushed to a&e with a racing pounding heart and fainting on New Year’s Day they took me seriously and referred me for an urgent echocardiogram.
I had the same symptoms as you a racing pounding heart rate, I literally just had to move around on the sofa or in bed and my heart would begin to race, if I stood up and moved around or walked up the stairs it’s like I had run a marathon it was banging so heart I was scared my heart was going to explode.
After my MRI in March they stopped all my meds and now you just get told to go back to living m, I feel better without the meds but I still get the pounding it doesn’t race anymore like it does but certain things like walking up the stairs or getting up sometimes catch me out and my heart will pound strong and forcefully in my chest but my cardiologist just says my heart function is fine and to ignore it.
He makes it sound so easy! I don’t know if these are just after affects from what ever caused my heart failure, something obviously caused it and my feeling is I had myocarditis from a virus but it was never picked up or diagnosed, how did you get your myocarditis diagnosis what tests did you have to diagnose it, and what did your MRI say and have they got a plan for you going forward?
So sorry to hear what you've been through ! Apparently I have recurrent & resistant myocarditis, I had a very mild case in 2018 but never got better ,then a bigger episode in april this year. A&E dr dismissed me twice in the same week only to be admitted 5 days later very unwell , I was diagnosed with cardiac mri both times, echocardiography doesnt show it I dont think ,still have no underlying cause which is annoying ,I'm literally useless I can hardly tolerate any walking. I take propranolol too for 3 years ,dont even know if it bothers me coz I have that many symptoms 🙄 the cardiologist has sent me to rheumatologist for treatment but havent seen her yet ,thanks for the reply.
What sort of symptoms do you have?
I have heart pain,crushing / sharp / dull ache or bruising feeling ,dizziness & feeling faint when I stand up ,usually have a big spike in heart rate when I move at all . I feel chronic fatigue & nausea daily ,everything I try & do knocks me off my feet with tiredness but i can never get refreshing sleep due to pain
When I was admitted January 2020 bloods showed I had had a heart attack, so they thought. Other tests heart scan showed myocarditis and apparently blood results are same as if you've had a heart attack. The inflammation spread to my chest muscles and neck and it was too painful to swallow. I used to dribble rather than swallow my saliva! But gradually the symptoms did resolve. I was also told myocarditis came from a virus but it all came al.ost overnight. On a positive note I'm fine now x
Hiya, not sure I can be of much help beyond offering a self-care plan that usually works for me when I'm in an acute flare of recurrent pericarditis (a condition with symptoms quite similar to myocarditis). Feel free to copy and paste to a word doc you can print out and post somewhere in your home - it really helps to be able to read through the list and calculate what might be a help with whatever symptom woke you up in the middle of the night (half-joking - full earnest, myo and pericarditis both are beasts and middle of the night wake-ups are part and parcel. As is the 'Oh heck, is this a heart attack?' and 'Dad gum it am I EVER going to feel normal again?!'):
**The way I manage recovery from acute episodes:
Staying warm - but not too warm
Keeping indoor humidity down to under 60%
Eating using a well-balanced diet plan that includes plenty of fruit, veg, some meat, and 'healthy' snacks and nibbles (carrot sticks, diced fruits, popcorn, similar)
Not over-exerting myself - and that includes doing only the minimum housekeeping needed to keep the house presentable and hygienic but not magazine cover worthy - recovering is not the time to decorate the living room or start a huge DIY project
Getting back to pre-illness fitness by slowly reintroducing light exercise like short walks building up to longer ones, light (under 2kg) free weights, stretching, 'dancercise' (slowly, slowly) - but NO press-ups, NO sit-ups, and lay off the rowing machine until cleared by medics
Accepting I'm going to be useless after 9pm
Accepting my mental acuity is going to be 'foggy' during the recovery period - so no big life-changing decisions
**The way I manage my recurrent pericarditis is:
All of the recovery steps plus:
Avoiding heat and humidity in and out of doors - invest in a digital battery powered hygrometer (good ones are under a tenner) and if it shows your home is consistently high in humidity, invest in dehumidifiers for every room (not 'inexpensive' but well worth the money)
Avoiding mould
Restricting sodium and salt - DO NOT DO THIS WITHOUT CONSULTING YOUR MEDICAL TEAM, what works for me will often not work for you and restricting sodium and salt can actually cause further problems
Keeping a spreadsheet log (daily) noting pain, exercise accomplished, meals, BP, meds - very helpful for reference to understand what does and doesn't work
ETA: are you sleeping with your upper body slightly elevated? Are you careful to sleep only on your right side (quite a juggling act on a wedge pillow - stacking two bed pillows to elevate your upper body seems to make things easier for side sleepers)?
😊
Thank you! I'm fully convinced I've got some pericarditis going on now too ,any movement/laying down /eating causes more pain & I feel I have to constantly walk around holding my left breast 🤭 not even remotely funny lol! Sleeping is an ordeal ,I have pillows all around me its annoying as hell. I now eat very little as the spasms seem worse after food even a tiny amount ,I've lost over a stone (still enormous) I've developed difficulties swallowing & all tests didnt show much other than tiny patch of gastritis. If I could stop being so upset all the time ,I hate my kids seeing me like that ,thanks again for your help xx
Oh do I know JUST what you mean about feeling a need to support breast weight! I sewed an underwire into the left cup of several of my non-wired bras in hopes that would help (it didn't). It may work for you but for me the only real relief comes from physically holding that poor thing up to take the weight off my pericardium.
Luckily my husband averts his eyes, lol, and my children are 'grown and flown' with families of their own so no worries about how it looks at my house
The things we have to do! I cant stand a proper wired bra anymore it's too painful 😂 I thought I was on my own with that one ,walking around carrying a boob to the point I thought I'd gone insane
No, not insane, just in the middle of one (or possibly two) condition guaranteed to make you think you are never ever never going to be yourself again.
You might want to ask your medic if you might have 'myopericarditis', it's like the double-whammy of the heart inflammations and it's not as rare these days as it's claimed to be. All the 'joys' of both conditions combined and I hate to tell you this - it's going to be several more months before you gradually begin to feel close to normal.
The only way to cope with either or both is to learn and then repeat the following:
This is not my fault. I'm doing everything I can to self-care and work with the consultant(s).
I have to say that to myself several times a day and I've had recurrent pericarditis since the late 1990s.
It helps if your family understands what you're going through and that recovery is going to take a very long time. There will be days you wake up feeling great (meaning 'normal again') - and you'll be tempted to overdo. Don't give into the temptation - let the family do the washing up and vacuuming and dog walking.
Also, it is imperative to get your employer onboard - he/she/they need to understand you will be limited strength and energy wise for at least the next 18 months (sorry to have to say that but full recovery takes a long time depending on the severity of the case). I did keep working but I was lucky to work for a company with a very understanding owner. If they hadn't been so great about it all I would have had no hesitation finding a new workplace. (I did take early retirement in late 2010)
Thanks so much for your kindness, at this point the drs think I've lost my mind & cant see me being properly checked by cardiologists again,they have sent me to rheumatologist now . Unfortunately I didnt have an understanding employer I explained what myocarditis is & they said it all sounds a bit far fetched & I then lost my job. I actually developed some other chronic illness after the first time ,small fiber neuropathy being one of them ,crazy the damage a virus can do to people & nobody believed me !
Hi I'm sorry to hear your feeling this way. I had myocarditis & pericarditis a few years ago I was 18 month in pain it was a slow recovery I too was made to feel I was wasting their time as the months went on. I will be honest I still don't feel 100% back to my old self but I now suffer with anxiety which doesn't help. Try to rest & relax as much as you possibly can it will help. I think I made myself worse by pushing myself & putting myself under pressure to get well. Take it day by day it does get better. Hope you feel much better very soon x
Thank you for the reply , it's such a horrible thing to experience isnt it ,the drs think I've lost my mind & the stress & anxiety that these conditions have caused I fear will never leave me ,I never did get back to normal since the first time in 2018 xx
It most definitely is. I feel its not taken very seriously. I was very well taken care of initially but then felt I was very much left to get over it which as you & I both know is not as easy as it sounds. Always here if you need a chat x
Hi Helly75, Im sovery sorry to read about how difficult you are finding everything.
I had Myocarditis & Pericarditis 3.5 years ago. I was very ill for 2years & the condition has changed my life but I look on things now asmy 'new normal'
My heart has some permanent damage and is constantly enlarged causing a number of effects. I manage to work part time now, I enjoy regular lovely walks (on the flat) and can play happilywith my grandchildren.
I don't need mich more than this so am happy with my new normal. Couldyour GPprehaps refer you to a 'talking therapy'?
This might help you find an acceptable new normal and one you can work towards enjoying.
I hope youcan come to view themedical interventions like scans, rhumatologist & other specialists - as positive THEY WILL HELP YOU - do give them and yourself a chance.
You are doing well - this can be a horrible & frightening condition so please don't be so hard on youryourself. It will take time to fully recovery, buy will get there. Wishing you well. Jennie x
Thank so much for the kind words, it's all just horrible, I'm finding some symptoms now seem more like pericarditis, movement, laying down & eating cause me a lot of pain & spasms ,I will just have to wait to see what rheumatologist thinks. I'm just in this awful grip of fear at the moment . I'm glad you found your new normal & enjoy life with your grandchildren, I'm happy for you 🤗
I hope you can find yours soon too as symptoms gradually ease. Its so frustrating how ling it can take and when its 2steps forward and 1/2 dozen back 🤦🏽♀️
Back you will get there Im sure. I totally understand your fear and think talking therapy might really help. I cried lots with pain & fear- but eventually I came to understand my symptoms, triggers etc anxiety definitely made things worse as it affected my ability to cope with everything so I felt worse - when I thought positively the pain etc was more manageable. Do keep talking on the forum people are sooo kind and supportive and have a wide range of real experience to draw on and offer advice. I really wish you well x
I was told by a old GP to if our them , even after heart attack and stroke. I’ve been living with severe chest pains which come and go at rest or been actives. Been diagnosed with u stable angina and heart spasams by director of cardiology as well. But his under study looked at same angiogram and told me no I do t. I’ve been rush in to hospital because ecg showed I was having an heart attack for consultant to say they had nothing to compare it with.
So basically I just ingnour and pop GTN Tablets until I get relive from them and live and wait for next one.
Hope u get sorted.
Jeff
So sorry for what you're going through Jeff, they all have different opinions dont they & dont stop to think theres a human being in pain & suffering at the end of that ,thanks & I hope you get sorted too
Hi Helly, I had Viral Myocarditis when I was 37 yes it was painful and scary and so debilitating. I really took it easy for approx 9 months and in that time I got stronger & the pain started to subside. I would suggest relaxation techniques and deep breaths help and breathing through your nose. I went back to work and got my life back. I am careful on what I eat even now with too hot or spicy foods and even some dairy products. I am now 71 and still work one or two days a week be patient with this illness as time does heal. I hope this helps.
Not what you're looking for?
You may also like...
Myocarditis
Diagnosed with myocarditis in 2018 & again april 2021,really struggling to do anything, heartrate...
myocarditis recovery
I'm 5 weeks post diagnosis but still awaiting an mri. I just wondered if anyone else during...
Myocarditis
Hi.
I spent a week in hospital following dizziness, fainting and chest pains.
I was treated for a...
Myocarditis
Hi everyone,
Just joined and would like to find other people who have had myocarditis.
My story is...
Myocarditis
Readmitted to hospital on thursday with worsening symptoms & troponin rise, I was sent home the...
Myocarditis 
Myocarditis 
Myocarditis
Is this Myocarditis? Help?
Myocarditis 
