Feeling defeated

[Helly75]

How on earth am I continuing to feel worse with myocarditis after this long?! Been to gp who just said I looked alright . Constant feeling of weakness with chest pain & claminess. I didn't send the email to my cardiologist about repeat echo as someone else told me it was in place & another told me I'd have an annual echo ,turns out neither of these things are in place . Been to A&E 2 weeks ago ,sent home as usual so I don't want to go back,just about had enough 😫

[Sunnie2day]

You have my complete empathy - myo and/or pericarditis lasting as long as yours has is horrible, and the very lengthy recovery period is exhausting. Recovery can take up to a year, especially when you have a medic so lacking in awareness he/she says you 'look alright'. meh on that GP.

Are you under only a GP or were you referred to a cardiologist - if you still have the cardiologist it would be a very good idea for you to 'chase up' the echo with the cardiologist. If it's just the GP - who has already dropped the ball claiming you look alright (which displays a complete lack of awareness of how debilitating 'invisible' illness like myo or pericarditis is) - push as hard as you can feel safe to do with that GP to get your echo booked ASAP.

If the GP continues to be dismissive of your continuing illness then you need to go private even if it means taking a personal loan.

I'm beyond sick of hearing supposedly credible experts who should know better say myocarditis is a mild condition - it isn't and cases like your require close monitoring and expert continuing care.

Please don't give up, and please keep us posted on how you get on.

[Helly75 in reply to Sunnie2day]

I'm just so worn out with it & had enough. Some GPS will check troponin & maybe do an ecg, this one however says he has a rule not to. I literally begged the cardiologist in August not to discharge me so he gave me his email ,at this point I already feel like a nuisance but did think the repeat echo was in place ,later to find out its not . A&E sends me home so I'm just considering paying for an echo myself,that will require GP referral & the dread of having to ask is overwhelming, the gp said he couldn't refer me for an echo

[Hidden]

Hello

There feels like nothing worse when you know as it is your body that something is not quite right and yet you feel you are been ignored and this should not be the case

Your Doctor may feel you look alright but they don't know how you feel and sometimes we do look fine as many posts say the looked fine felt fine but what is going of inside is not always what is happening inside , it annoys me as I have been through been dismissed and then things have gone wrong and to be honest it has made me lose confidence in the professionals at times but what I have done is learnt to speak up and not give in with them if I am not happy , I struggle to do it but as I said this is my body so I need to

Get that email sent now so it is on the records explain how you are feeling and worried in it let them know you are strong don't let this defeat you

And if you need to see your Doctor inbetween and they say you look fine then tell them how you look is not how you feel and can they note it on your records you have told them this as you will be surprised what they miss of your records so if ever you need to complain there are no notes to back up what you have said just your word against theirs which then gets you no where

Don't give up dig deep and find that strength to speak out and get the answers you need x

[Helly75 in reply to Hidden]

I honestly have had enough of it all , I even tried the steroids as long as I could tolerate them ,I never tolerate meds very well . I find with many Dr's if you aren't rolling on the floor screaming you're not taken seriously. I should have sent the email ages ago but honestly feel like such a pest . I've got nothing to lose but if he says no I will just have to pay for it myself xx

[Hidden in reply to Helly75]

You are not a pest they are there to help us , send it of do it now while you feel so fed up Let us know how you get on x

[Helly75 in reply to Hidden]

I will do, thank you 😊

[Retirement65]

Hi helly so sorry your having a tough time sunny2day has put it all perfectly what I would just say (worked in general practice) you are absolutely entitled to ask for a referral for an echocardiogram my advice check where your going to go privately (costs etc and when your likely to have an appointment) so that when you ring your GP practice you are able to say you need your referral to go to this appointment so it gives them time to sort this out but please don’t worry about asking for this its regarding your health which is important take care hope you feel better soon 😊x

[Helly75 in reply to Retirement65]

Hi, I've had to ask for lots of private referrals over the last 3 years as I was never listened to or taken seriously, normally the GPS have no issue with it but I was refused on some occasions & told they were too busy. I will try speaking to the cardiologist first & if he says no then I will speak to my own Dr. Unfortunately for me I know where I'm going privately & how much it costs ,been there done that 😆

[Retirement65]

Hi helly that is so unprofessional of your practice to refuse private referrals it’s a patients right to seek out there own well-being and if that means going privately then so be it never in all my years would we ever have refused a patient a referral I would be seriously looking for a new GP and I know probably what your going to say ‘it’s not that easy’ but I would keep an eye open keep a check on the nhs website as they should have all the patient feedback regarding the different practices in your area good luck and I do hope you get sorted very soon x

[Helly75 in reply to Retirement65]

I was told at the time it was because of covid, so I waited a few weeks & asked a different Dr who said it was no problem, will see how it goes when I can stop being a big chicken & send the email xx

[Tricia7048]

Aaww bless what a shame. Thats about as good as my doc.."this is as good as it gets". When anaemia was killing me!!!! Is your level ok? Could it be a clue? Wishing you all the best xx

[Helly75 in reply to Tricia7048]

Hi, I spoke to the gp on the phone first sobbing my heart out ,then he gave me an appointment & said I looked alright ,I almost laughed! My iron has been low for a while ,hospital dr said I needed infusions & didn't arrange it ,I don't tolerate iron tablets, it was checked on Friday again so we will see

[Raffles77]

Morning, can you ask to be referred as, no disrespect meant to GP,s, but feel they are even more general and they don't always know and if you are not happy, ask to see a specialist perhaps.

[Helly75 in reply to Raffles77]

I will try speaking to the cardiologist first & see what he says ,if he says no I'm just going to pay for it myself I think

[OldHippy]

Hi Helly75 - what a horrible time you're having. I can really relate, tho I have a different conditions. I couldn't understand why I was feeling so ill for 2 whole years after stent and echo scan gave me all clear, and I 'should be absolutely fine'. Turns out, as I have discovered, to be almost entirely down to side effects of medication. Amlodipine, as it turns out. Good luck, I do hope you find the answer.

[Helly75 in reply to OldHippy]

Thats so awful for you! I was given amlodipine by a private cardiologist & never had a problem but a different dr gave me verapamil & I thought I was going to die . I don't do well with meds but have at least tried everything they've suggested ,hope youre well 😊

[KussKuss in reply to OldHippy]

I'm on Amlodipine for my blood pressure and it causes terrible fluid in the ankles, so much so my legs are often sore when I walk. I hate it but I dont know what else they could give me. I am due an ECG on Thursday and the GP was speaking about a kidney scan (must have the result of my last batch of bloods). May I ask what side effects you were getting from Amlodipine?

[OldHippy in reply to KussKuss]

Hi KussKuss, I have never thankfully suffered from fluid build up. The side effects that I experienced included all-over weakness and feeling of 'illness' which was hard to describe. Creeping, gripping sensations, nausea, weird feelings in my brain, light-headedness, breathlessness, bad fatigue, aches & pains in legs & hips, worsening memory, inertia, and - this was one of the worst - anxiety attacks which I'd never had before. Debilitating and profoundly depressing. Ultimately, my social & daily functioning was impacted to the point where I just couldn't work, be out of the house for long, or use my brain. I thought it was 'me'! I thought it was still my heart diagnosis, somehow. I know better now.

[KussKuss in reply to OldHippy]

Sorry if that took a minute to get to me. I have brain fog and a general feeling of illness too and like you, just thought it was me getting old. Thats so interesting. If my blood pressure is not too bad next time its checked, I may take a few days off to see if any of this gets better when I stop taking it. I am at my wits end with the fluid though as I cant wear socks if they even have a suggestion of elastic in them and one leg is worse than the other. Thats always been the case with pregnancy and everything, always worse in my right leg than the left (could be due to some old horse riding injuries but idk. I will let you know if it makes me feel better (stopping for a couple of days, however I dont have much faith in Amlodipine and am hoping my GP can suggest something else) Thanks for getting back to me and keep safe,K

[HHH2017]

Hi Helly75, Im so sorry to hear how unsupportive your GP is being.I had Myocarditis 4 years ago.

Your cardiologist obviously gave you the email for a reason so PLEASE do use it. It is important you aren't discharged until you are recovered &are monitored whilst issues remain ongoing.

Sadly with the condition it can take a long time. My heart remains enlarged to this day and has some permanent damage but I have learnt to cope with my condition and can manage it & my life to work better for me (if that makes sense).

You will get there too but you need support from your cardiologist who should advise your GP so do notfeel like you are a nuisance or keeping on this is care you are fully entitled to. BTW I walked 5k in the Race for Life yesterday, 1st time since I was ill that Ive completed the whole thing. I used to jog it! I was last, with marshalls walking behind me closing the course but it didn't matter this was great progress for me and I'm chuffed!!! Myo and pericarditis can be a long process to recover but IT WILL get better - hang in there.

[Helly75 in reply to HHH2017]

Hi, I'm so happy you were able able to do the race for life 🥲 well done you! That's the part that hurts me the most ,I was very active, i loved walking & used to do at least 5 miles a day on top of work & running after 3 kids & I miss it. Cardiologists seem to not be that fussed about myocarditis and think it's just a bit of an inconvenience for people but we know it's much more than that. They told me in 2018 I didn't have it ,but I was so unwell & just didn't go back to my normal ,Cardiologist this year said everything I was told between then & now was not correct so you can imagine the distress of not knowing for that long . Again you should be so proud of yourself & well done 👏

[HHH2017 in reply to Helly75]

Thats so awful! Im so glad you have a decent cardiologist at last. I have been very lucky on that front. Though Im still waiting for heart scan results from May (delay due to COVID?!)Yesterday did feel huge, thank you. You will get there too.

Have you talked to the BHF nurses on here and got their advise? They are very good.

You are, quite understadable fed up & worn out, by trying to get answers & support but don't give up its your body, your health & its soooo important. The BHF nurses might be able to advise on what to say/ask for in the email. Best of luck x

[Helly75 in reply to HHH2017]

I'm so worn down with it all & just don't have any fight left but I will keep trying ,I've spoken to BHF nurses a couple of times they were really lovely x

[Beempty]

I would suggest that you read The Lotus Sutra, English translation by Burton Watson, look up Nichiren Shoshu Buddhism. My ECG is fine, I will have a Echo Cardiogram on 9th November. Having a strong Buddhist practice. I need to prolong my life for this Buddhist practice.

[Pinkysparkly]

So sorry to hear how you are feeling and your GP not being very helpful. If you’re in a GP practice with a few more doctors, maybe make an appt with another doctor. Some are more empathetic than others.

Also, if you have a Facebook account, there is a group on there for people with myocarditis. I’ve added the link below. I’m on a different group for my condition and it’s been a wealth of help and support for me.

facebook.com/groups/Myocard...

I hope you feel better soon but don’t give up, ok?

[Helly75 in reply to Pinkysparkly]

Thank you, I will check that out & will definitely ask for a different gp next time

[Helly75]

I understand how you feel ,we all want to do what's best but I am just not taking that chance again xx