Pericarditis

[PericarditisSufferer]

Hi all

Really frustrated I keep getting relapsing pericarditis I’ve had it on and off for 2 years now and it’s causing me big problems with getting on in my life I am only 25. I’ve had about 10 chest X-rays over this time a ct angiogram and multiple echocardiogram - god knows how many blood tests and tests to check my immunology - is there anything I can do to stop this happening to me I don’t even know the reason why. The pericarditis has changed my heart rhythm and I need to take a medication to slow my heart rate down now - when it comes on I get so out of breath quickly - I feel really worried that I will die young because of this.

[Fortepiano]

This is horrid for you - I had bouts of recurrent pericarditis for 18 months, and though I haven't had any for 3 years I remember how painful it was.

I would go back and keep pressing your doctor for a cardiology appointment. I also see from your previous post you were on colchicine as well as ibuprofen which you found helpful - you could ask him about resuming it. The European (including UK) ESC guidelines recommend colchicine for 6 months for recurrent pericarditis and longer in some circumstances. Your doctor can also phone the hospital duty cardiologist if he's uncertain.

I think doctors don't pay much attention because it's generally self-limiting and long- term complications are rare - but it certainly hurts. I barely slept when it was at its worst! It's so painful that it's hard to think that it's normally a benign condition which doesn't actually cause damage - but this is the case, so try not to worry. Try phoning the bhf nurse helpline.

I hope this will be your last bout with it, but the cardiologist advised to continue the meds for some time after it resolved, and I still do take ibuprofen if I have any twinges that I think might be the first signs to nip it in the bud.

All the best

[PericarditisSufferer in reply to Fortepiano]

Thank you for your really kind reply yeah it really is horrible ! It’s nice to hear of someone else that has had this and sounds exactly the same as what I’m going through.

I have asked for them to recommence colchicine which he did refuse to do I will ask him to ring the cardiologist when I go back then.

I have gastrointestinal problems and had a big Bowel surgery when I was born and now have gastritis because of this so being on Ibuprofen long term is not doing me any good probably !

It probably has just made me feel very anxious having this repeatedly I keep worrying about the amount of ct scans X-rays I’ve had and what this will also do in the future to me.

Thanks again

[13allit]

Hi

I had a version of this after heart surgery. My cardiologist advised that when I had a flare up to take it easy and not try to work through it. He said my body would let me know when I’d done too much and I was to listen to it. That helped my a great deal as I thought in needed to keep going, When I did that it was less painful and I recovered quicker. I also found that I became very tense with it and this made the symptoms worse. I’d been going to yoga before my heart op and as soon as I could I went back. This helped with me relaxing and also stretched out my muscles. It may not work for you but have you tried any forms of relaxation and breathing techniques? I got several apps on my phone so I could do them any time. If nothing else it helps take your mind off it! I hope it wears itself out soon and you’ll be able to continue with your life again.

[Philra]

Hi

I had chronic Pericarditis. Two other peri sufferers and I set up the UK Pericarditis group to provide support for peri patients. You are welcome to join our site:

facebook.com/groups/1095344...

[Helen_BHF]

Hi PericarditisSufferer , really sorry to hear that. You might find this thread useful: healthunlocked.com/bhf/post...

You can also chat to our heart helpline team, our nurses will be happy to help: bhf.org.uk/informationsuppo...

[FoxyG79]

I was really ill in 2015 with pneumonia and pericarditis/tamponade. I was treated in hospital and eventually they drained the excess fluid from around my heart (a v traumatic experience!). I was discharged with anti inflammatories and told to rest, no follow up or anything.

Anyway, since then I have had 3 flare ups of pericarditis symptoms. Each time my ECG, xray and bloods have been normal (which is good), but I have the awful chest pain, short of breath and exhaustion.

I am currently awaiting an appointment with the cardiology team but up to now I feel quite alone. The medical professionals I have seen have been really kind but none of them know anything about pericarditis, well no more than I already know from researching. They just say the cause is unknown or ?viral?? The most recent flare was in May 2019 and I was referred for an emergency echo.....cardiology replied to say I don't meet the criteria for that so I am now waiting for my appointment with their team in September!!??

I feel like my life is stagnant and I cant simply get on with the worry of a recurrence in the back of my mind.

Sorry my reply isn't very positive. But just to let you know you're not alone. I wish I had some good advice for you.