Is anyone else living with pericarditis?

[andyg1974]

Hi all,

About 8-9 years ago, I was in A+E with pericarditis (I think due to viral infection due to stress and I believe I almost died) and they told me that you can't get it again. But that it has damaged my heart + in future I could have a heart attack in the street as as result of this (even if I was 100% fit and healthy. I didn't have any heart problems before (or since) but I don't have any family history to know if I'm susceptible. I got no support or counselling afterwards, but feel like I've got a death sentence over me all the time. Does anyone else feel like this, or can suggest any help networks?

[skid112 Heart Star]

Hi there, sorry to hear of your issues, there is more information here bhf.org.uk/heart-health/con..., that may help you.

Have you spoken to your GP and arranged any follow ups

[Frannie74]

Hi Andyg, did you see my earlier post saying much the same? Did you have a tamponade - a build up of fluid that caused your heart to become compromised?

I'm finding having pericarditis really difficult - physically and psychologically - it's not like having a pain in your leg and thinking "oh well I'll take some painkillers" - it's more like "my heart hurts, I hope I'm not dying".

I've been told that no damage has been done yet by my pericarditis and a tamponade is unlikely at this stage and not to worry as the pain isn't life threatening - easier said than done.

By the way looks like we are the same age!

[Andie1975]

Hi Andy

I have recently had a minor heart attack and have also been diagnosed with pericarditis. I have a hard time trusting that it is just pericarditis and not another heart attack. I have been to A and E a few times since I was discharged from hospital over a week ago as the chest and back burning pains were really worrying me. I don't know about you but my symptoms move around from my back under ribs to front upper chest, always a kind of burning nerve sensation and breathlessness/muscle tightness. I do feel your pain as the worst thing is not knowing when it will all end. I have one day that seems slightly better then worse again the next day. I'm trying to eat anti inflammatory foods which have to help in the long run. Fingers crossed this doesn't last too long for us.

[AlibaliM in reply to Andie1975]

My symptoms are exactly the same. I am on 3rd course of colchicine and taking Naproxen. It’s not helping. I’ve tried my tens machine, numbing patches, heat and cold packs as well as morphine which makes you feel rubbish. At my wits end. Upper back pain is horrendous at times and as you say some days you think you’re getting better then the next day it’s back. Have you found anything that gives you relief?

[Andie1975 in reply to AlibaliM]

Hi Ali

This post was a year ago and the symptoms only recently started to abate to the point it's very mild. It never was pericarditis! One cardiologist diagnosed this, yet another, one month later said he highly doubted it was peri. I took colchicine for 3 months with no difference whatsoever. I believe mine is gut oesophageal related with heightened sensitivity due to anxiety about the whole heart attack thing. I have since had camera down and have gastritis. Mine eased when moving around but was terrible at rest and eased when leaning forward and it's on that basis I was diagnosed peri. Honestly they do not know everything and yes unfortunately specialists do hazard a guess at what is wrong with you but they don't always get it right. If colchicine hasn't eased it any I would be pursuing another opinion and further tests.

[AlibaliM in reply to Andie1975]

Thanks for reply. I realised it was a year passed but as symptoms were similar thought it was worth asking. I’ll finish course and see what else is offered if anything.

[Philra]

Hi

I’m one of the administrators of the UK Pericarditis group on fadebook. We have over 200 Pericarditis patients on our site. The link to apply to join is:

facebook.com/groups/1095344...