Understanding pericarditis symptoms

[Schora1]

Hi, does anyone suffer with recurrent pericarditis and pericardial effusion? Do you get pain in the tips of your shoulders and down your arms?

[Sunnie2day]

Hiya, Schora! Yes - I have recurrent pericarditis and Friday was informed I also have pericardial effusion - and I have EXACTLY the symptoms you describe. Those symptoms (and a few others commonly associated with both conditions) had me thinking I was having a heart attack the first time I experienced them.

[Schora1 in reply to Sunnie2day]

Hi Sunnie2day, it's awful isn't it. I have pericardial effusion too.

So uncomfortable.

I have had this on and off for 13 years but been wrongly diagnosed and treated for angina until March this year.

[Sunnie2day in reply to Schora1]

Oh yes it is awful! I've had recurrent pericarditis since 1999, I've suspected the effusion part for some time now and Friday afternoon it was confirmed - official Pericardial Effusion (I feel so privileged. not). I also have Rheumatic Heart Syndrome (had the fever as a child in the 1960s) with some very slight scarring on my aortic valve - it's not fun having RHS but it's been manageable - now the pericardial problems make it all so much more 'swell'.

Re the angina - I too am being treated for it (Bisoprolol 1.25mg+300mg aspirin, NitroLingual 400 spray as needed (and luckily I've only needed the GTN twice - made me dizzy, gave me a wicked bad headache, and I felt as though I was going to be sick for hours after). I asked the GP about the possibility the angina is a symptom of the pericarditis or the pericardial effusion (saw her Friday) and she suggested I ask the cardiologist when I see him again in late October.

Do you wear a MedicAlert bracelet? Mine says Angina, Recurrent Pericarditis - the GP and cardiologist both say those are the most important conditions for a First Responder to know about.

[Schora1 in reply to Sunnie2day]

Hi, no I don't have a Medic Alert bracelet. Maybe it's something I need to enquire about.

The GTN does give you headaches and it has made me sick a couple of times.

I'm currently only on colchicine and lansoprazole as the other medication has caused Barrett's oesophagus and my liver profile went dangerously high.

In the last 12 months I have gone from walking at least 5 miles a day to practically nothing due to pain and breathlessness. It's so frustrating.

You must be more frustrated than me having had it for so long.

It can feel quite lonely too having this as people say oh wow you look so well when they don't understand how debilitating it can be.

[Sunnie2day in reply to Schora1]

I carry that spray everywhere with me but since I started the beta blocker and since the fluid has gone down to a low enough amount the cardiologist says is not enough to make them go in after it, I haven't needed the spray.

Personally I'm becoming more and more convinced my chest pain correlates to the pericardial problems and nothing else but - but I didn't spend years training, they did, so the next step for me is probably going to be a cardiac catheterisation, the cardiologist says, to determine if there is any blockage. Again, I'm not the trained one, but I am going to try very hard to convince him to go with a cardiac MRI instead of the cath. They say I have angina - but they also took the time to find out about the effusion, and to confirm the US diagnosed recurrent pericarditis (I worked my entire career in the USA, retired home to the UK in 2010).

The GP and cardiologist said the bracelet means a First Responder knows right away what could be causing what looks like a heart attack, and gives them a file number and a telephone number to call for a more complete health history. I asked if I should have one, and if yes, what should be engraved and was told the angina and recurrent pericarditis. When you see your GP or cardiologist, ask if they think it's a good idea for you to have one, and if yes, what should be engraved on it. MedicAlert has some nice ones that look like jewellery in several styles.

[Schora1 in reply to Sunnie2day]

Go for the MRI. I demanded one to confirm I did not have angina or any other cardiac issues.

I will definitely ask about the bracelet.

I'm fortunate to have a nephew who is a doctor and he tells me what to say and ask for. He has said for years I didn't have angina.

Please push for the MRI.

Keep me posted how you get on. Thank you for the information on the bracelet too.

[Sunnie2day in reply to Schora1]

Forgot to say - you can build back to those five miles a day (get approval from your cardiac team first, then go slowly, carefully) after an episode (I call it that, some call it a flare, others say case) - the way I do it is to plan my route so I have a handy bench to sit down on, or a wall to lean on when I am in pain or breathless (honestly, what's worse, the pain or the breathlessness feeling - and personally I think the shortness of breath is worse. I say that as my pain is the typical 'dull ache' even when it radiates up from the centre-left of my left breast and up to my collarbone then out to my shoulder and down my left arm, and usually stops when I stop for a break. (ok, here's where I admit there have been, over the years, a few times resting didn't help with pain or breathlessness and that's why I started carrying a mobile everywhere - comes in handy to ring for an ambulance from the bench).

As for the 'but you don't look unwell...' grrrrr. Too right, people really don't get it - recurrent pericarditis is debilitating, and pericardial effusion is as well. Big double-whammy to have both. The rheumatic heart was always just 'my stupid little heart thingie' but the pericardial problems are a lot more troublesome. More so as I went so long between episodes - my last bad one was 2005 or so, and having it smack back at me this time has been a real shocker.

[Schora1 in reply to Sunnie2day]

I agree definitely the breathlessness is worse than the pain.