Has anyone suffered from pericarditis for longer than a month and if so how did it make you feel and how was you treated?

[Stanadams20]

I’m 24 years old, I don’t normally write on things like this or even read them but I feel so alone and scared. I was diagnosed with pericarditis over a month ago, never had any health issues in my life, they couldn’t find out the reason why I have got it and it doesn’t seem to be getting better. I don’t feel like I’m living I just feel like I’m existing. My chest is constantly hurting and I’m really anxious I just drop down dead all of the time. I’ve been in and out of hospital for the past month but they keep telling me it’s fine and there’s nothing I can do about it. Please anyone who’s been in the same boat please reach out, I’m so isolated in my own head

[Highlandmist]

Hi, I had to look this up as I didn’t know what it was. Really I just wanted you to know that whatever you’re going through you’re not alone. I can fully understand some of the feelings you have and the shock of finding out something is wrong when you’ve never been ill or had anything like this before. I had a mitral valve repair 6 months ago - right out of the blue. Please don’t feel alone, keep talking to people here or your doctor, challenge for answers. Good luck ❤️

[Stanadams20 in reply to Highlandmist]

Thank you very much for your response. I hope your recovery is going well. I’ve got myself in a state of negativity that much that my family almost think I’m depressed. It’s terrifying especially when it’s your heart. It just feels like there’s so many grey areas!

I’ve had it for over a month now, the pain seems to be calming down but there I have flare ups, I went shopping today and whilst walking around the shop I just all of a sudden started panicking and thinking my heart was going on me. I was on Colchicine and they worked slightly but now I’m purely taking 600mg of ibuprofen 3 times a day. With a bit of luck this will work.

If you need a chat regarding anything I’m here too. Please don’t hesitate to message me. I looked through some people’s messages on here and realised that this will put me at ease a lot more than google, google is not your friend as I have sharply discovered😂

Regards x

[Gingerspice18x]

I’ve not been diagnosed with this myself but I can totally relate with how you feel! I’ve had constant chest pains and several palpitations a day for months after having a baby and I’ve been in and out of hospital and they keep telling me I’m fine when I know what I’m feeling! feels like I’m constantly waiting for a heart attack to happen any minute

[Gingerspice18x in reply to Gingerspice18x]

What do your chest pains feel like?

[Stanadams20 in reply to Gingerspice18x]

Feels like a pulling or a squeezing in my chest, my advice is go to A&E asap. It can cause more problems if you don’t. You’ll probably be fine and it can be treated but your baby needs you so just go to be safe x

[Stanadams20 in reply to Stanadams20]

Message me if you need advice on it. If I’m the only one you can talk to then do it, it puts you at ease

[Gingerspice18x in reply to Stanadams20]

I’ve been several times but I’m going to have to keep going maybe I will try a different hospitals A&E instead my chest pains feel like a poke or a pinch and in the top of my back and ribs as well it’s horrible but your right he does and I dread the thought of something happening and him being left without a mum! thank you for that I appreciate it x

[Stanadams20 in reply to Gingerspice18x]

Drop me a private message and we will talk it out, I’ll tell you how I deal with it all and what’s going on. I feel alright some days but others I feel like baba, I do get through and so will you so don’t worry x

[Ava68]

Hi I am sorry to hear of your worry. I was diagnosed with pericarditis in October 2018 and was prescribed Colchicine which I believe helps alleviate the inflammation but agree it was one of the most terrifying experiences I have had mainly because I was very well prior to that. It took me over 3 months to recover but the pain wiped me out. I remember going to sleep was particularly difficult time as lying down was impossible because of the inflammation so I slept upright. I also got into a routine where I slept every afternoon so I had some energy for my kids after school but it meant I was signed off work and also not driving which added other stress but was the best way of recovering for me.

I had pain in my chest and back, causing me anxiousness and lack of energy and are unfortunately normal effects of pericarditis. I had never heard of it before and once I got out of hospital felt a bit abandoned and of course the feeling of anxiousness was quite overwhelming but then I started to hear of others in my own social network mainly men, including a marathon runner, my golf partner and an ex professional rugby player who all had had it too all the same symptoms including foreboding anxiety too so it brings down people of all level of fitness. That helped me mentally to know too but I still found it a worrying time.

Hopefully you are getting better.

In terms of why you got it I was tested for all kinds of things but they never found out why. I wonder if I had been bitten by a tick which can cause similar issues but sometimes one has to live with not knowing why but again I found that really hard initially and added a bit to the stress especially when people would ask why I got to and question the diagnosis.

I was unable to drive for those 3 months as I had unknowingly developed other heart issues so in hindsight I am grateful to have had pericarditis as it drew attention to other underlying issues which I never knew about.

I hope you are recovering now. I hope you can take it easy, rest is key, listen to your body. I agree it is difficult not to worry when you are not well. Not Googling is also good advice which the hospital told me not to do too.

I hope my reply is helpful. I am trying to write thoughtfully and of course with good intentions and not add to your or anyone else’s stress.

Wishing you good health and happiness.

Ava

[Sunnie2day]

In the late 1990s I was diagnosed with pericarditis after collapsing in a US neighbour's driveway. I honestly thought I was having a heart attack but the last thing I remember hearing as the EMTs loaded me into the ambulance was one of the EMTs on his radio advising the ER it looked like cardiac tamponade - and it was. Thankfully I was in the US where pericarditis is endemic so every medic recognised what was happening without a lot of delay that would have meant my death. (Pericardiocentesis is a life-saver but not for the faint of heart and that's half joking full in earnest).

At the time, the medical opinion was my case happened as a consequence of Dengue Fever Stage2. Others have been diagnosed after chest trauma (injury or open-heart surgery, usually), after a 'heavy cold' or case of pneumonia, or for no reason they can work out (idiopathic meaning no discernable reason).

FF to the early 2000s when repeated bouts meant I was diagnosed with what they call 'chronic pericarditis' and we here in the UK call 'recurrent pericarditis' - over the next 15 or so years I made myself a lay-expert so I could manage my condition (on top of a few others, see my profile if you have a spare few minutes but I warn you it's boring, lol) and as a consequence I did go several years without an acute flare until spring of 2019 when I had quite the wobble.

The following should be some help to you managing the flare and recovering to regain full health and fitness. I've just posted a list of credible sites for you on your other discussion so I won't repeat those here.

Sleep on your right side - sleeping on your left increases the body weight pressure on your pericardium and causes more pain.

A hot water bottle against your left rib cage-towards your back is a marvel for easing the pain.

Sleep with your upper body slightly elevated - invest in a 'wedge pillow' or stack two firm bed pillows one atop the other then lay the stack lengthwise on your bed to raise your upper body whilst sleeping.

Avoid: hot humid conditions - no hot tubbing or long hot showers, no holidays to hot humid climes (if we're ever free to holiday abroad again, that is).

Avoid mould

Avoid physical activity beyond boiling a kettle and walking from the bedroom to the WC to the sofa. Especially avoid inclines and stairs. You will have 'good days' and 'bad days' - on 'good days' you'll wake up pain free and feeling like a world beater. Don't let that fool you, continue to restrict your physical activity until you have at least a full two weeks of only good days or else you'll find yourself having a series of very bad days following the one good day you thought you could do some catch-up of physical activities. Trust me, I very sadly discovered that tip the hard way

Colchicine is good but long-term use can lead to some complications (I turn green and my organs try to shut down, for example, so all they can give me is aspirin and words of encouragement).

See if your GP surgery has a nurse who can PPE-up and give your chest a listen at least once a fortnight; the nurse has to have been trained to hear 'pericardial friction rub' that is 99% of the time present in an acute flare of pericarditis - diminishing or completely absent sound means the flare is cleared and you are in recovery.

Hope this helps, welcome to the pericarditis club and hopefully this will be your one and only experience with a condition that can go from a major annoyance to a major emergency rather quickly. Unfortunately not many medics here in the UK have enough experience with it, if you're very very lucky, where ever it was you were diagnosed had access to the expertise of a pericardial specialist (a rare breed in the UK owing to the rarity of pericarditis here).