Pericarditis

[Grp009]

I have been diagnosed with a patriarchal effusion and just wondered what other people are feeling in terms of symptoms and effects on health. Not had shortness of breath or anything just muscle weakness, fatigue and pain. But getting weird sensations in my chest.

[Grp009]

Pericardial effusion

[Rhubarbaba]

Is this Pericarditis? If so, I have been diagnosed with it due to a covid infection... I have terrible chest pain and breathlessness and some days the fatigue is so bad I just need to sleep.

[Grp009 in reply to Rhubarbaba]

Hi, yes it is mine is left over from a vital infection but I had a negative covid test which I'm now not convinced was right. I'm getting all sorts of symptoms my main one is bouts of chronic weakness, fatigue and heart trying to beat itself out my chest.

[Rhubarbaba in reply to Grp009]

Yes this sounds like me, after my positive covid test I got taken to hospital with the most terrible chest pains, my ecg was bouncing all over the place, luckily I didnt need oxygen so I was given medication and sent home that night. At the time the hospital was filling up with covid cases and there was a wait for 24 hours min for a bed. After the A&E visit I was referred to the Rapid access chest pain clinic. They were great, I was diagnosed with pericarditis and given loads of meds,

I am still on colchicine now as it was a 3 month course.

Just before Christmas I had an echocardiogram and they told me then that all I can do is rest until I get better.

Some days I can lift the kettle and others I really struggle to even hold a brew.

I am getting palpitations much more than I used to, some of them feel like I've been punched in the chest.

I really hope you start to feel better soon it's awful because nobody can tell you how long it will be because covid is so new.

I ended up in the walk in centre recently with a terrible rash all over my body, they said I had caught another virus, because my immune system is weakened. My hair started to fall out and my skin is peeling in big chunks.

Oh bloody hell, that sounds like such a boo hoo woe is me post. It's really not meant to be.

Take care of yourself and try to rest as much as you possibly can.

[Sunnie2day]

Hiya, sorry it's taken me two days to find this - I'm in the midst of a 'mild' acute flare of recurrent pericarditis and some days it is too much to boot up the laptop. Put the kettle on and feel free to copy-paste this to a word doc you can print out and post to the fridge for offline reference.

What you're feeling is fairly normal for pericarditis (I've had recurrent pericarditis since the late 1990s after having Dengue Fever) - tired, achy, strange sensations in chest including short bursts of stabbing pain when deep breathing in or out, chest ache starting in the centre of left breast and radiating 'north' to shoulder/neck/jaw and down left side, the 'fun' experience of good days and bad days with the added bonus of the good days being such a relief you try to overdo catch-up...which then leads to bad days where the thought of lifting your arm to use the telly remote is just too much effort to contemplate.

About the strong heartbeat, my cardiologist has me on Bisoprolol 1.25mg in large part to 'calm' my strong heartbeat and help with presumed microvascular angina. I was in the middle of the worst flare (Spring 2019) I'd had in over 14 years and by day 3 on the beta blocker the chest pain from the pericarditis was much improved - he thinks the calmer heartbeat might have helped keep the pericardial pain down at the same time it helped with the angina pain. You might want to ask about a low-dose beta blocker (Bisoprolol is cheap and cheerful, there are others).

***Important Note: Recovery/clearing the flare can take weeks and months. In 2019 I had a flare so acute it was nearly a year to recovery. And a month ago I started having symptoms again, sigh. Not as bad a flare as through 2019 but still not great.

***Another Important Note: When to worry - if you find the pain much worse reclining/lying down and/or you develop a cough when reclining/lying down that is relieved by sitting up and leaning forward. It is a sign the effusion is worsening and you need immediate professional attention to prevent/remedy a condition called cardiac tamponade. The short definition: the sac fills so full of fluid it squeezes the heart 'unacceptably' - I laughed when my cardiologist used the word 'unacceptably' as I knew what he meant was the squeezing is life-threatening - I've had it twice and the remedy is not pleasant but the alternative is far more unpleasant (pericardiocentisis and if it's an emergency one, the pain meds don't always have time to work their magic).

Coping without causing a relapse or developing recurrent pericarditis:

*No matter how good you feel on good days, do not try to do anything strenuous (like catching up on vacuuming or starting a major DIY project or walking an extra half-mile to start rebuilding fitness - a good day can make you think you're recovered when you're not and any strenuous activity can set you back for days.

*Sleep with your upper body elevated. A wedge pillow or two bed pillows tied to make one big pillow then laid lengthwise down the bed, either works well to elevate your body but if you're a side-sleeper, the two pillows work better than the wedge pillow.

*If you are a side sleeper, sleep on your right side, not your left. Sleeping on your right side relieves body weight pressure on your pericardial sac and bonus - eases the chest pain a bit.

*Avoid heat and humidity (no hot showers or baths, no sauna, no hot tubs).

*Avoid mould - if you have to do something around mould, wear a three-layer dust mask to avoid inhaling the spores.

*If you are not on Colchicine (some can't tolerate it, I can't) ask for a 15 day course of furosemide ('water pill' diuretic). It has been shown to help relieve effusion for some patients (like me). Everyone is different but the general consensus is the diuretic has efficacy. When I'm on it, the usual dosage is 40mg twice a day. If they put you on it you will A-need to stay close to the WC and B-feel near immediate relief which can lead you to think you can start knocking down walls to self-build that extension you've always wanted. Don't fall for it.

*Ask if you can get regular (Covid-safe) 'chest listens' for pericardial friction rub. It is a unique sound heard by a trained medic through the stethoscope and it tells her/him if you still have pericardial effusion sufficient to be heard - lack of the sound usually means you've cleared the effusion and can slowly and carefully begin regaining physical fitness.

Wishing you a happier 2021, please keep us updated on how you go on.

[Seajay in reply to Sunnie2day]

Thanks so much for this post about pericarditis recovery. They told me nothing in hospital; and recovery reels like it's taking longer than the heart attack I had 2 yrs ago. Seems with me pericarditis is caused by inflammatory auto immune disease.

[MissCS in reply to Sunnie2day]

Wow! Thank you Sunnie. I have had this chest pains since November after I had Covid. I have done all the tests...they haven't prescribed me any medication neither have they diagnosed pericarditis but l have been referred to the chest clinic. Now l know what am going through. The chest pains are crazy....with fatigue, abdominal pains etc 😡. Mine gets worse after every little thing l do and particularly worse after l shower so l shower once in 3 days. The pain is awful, nothing l have experienced in my life...l can't move, l can't talk for too long as l feel like fainting if l don't stop and lie down. Very frustrating. Thanks for your awesome tips. Really appreciate. Much love and respect to you for sharing. 💕

[Sunnie2day in reply to MissCS]

The chest pain unit will be diligent about finding out what exactly is causing your symptoms - you could have anything from Long Covid to Covid-related pericarditis to a heart condition the stress of having Covid uncovered.

I hope the tips I listed in my previous reply help you get through, and that your results from the chest pain unit come quickly and definitively. Please update as you go on

[MissCS in reply to Sunnie2day]

Also l want to find out how l can make my shower/bath times not impact my chest. I now shower once in 3 days and it still knocks me down with the chest pains and fatigue, shaking etc. I have tried to bath with lukewarm water but still get pains after. Any ideas or tips will be helpful. Thank you

[Sunnie2day in reply to MissCS]

The best tips I can offer regarding bathing are: purchase one of those plastic shower seats so you can sit rather than stand whilst showering, and make sure the bathroom is very well ventilated during the shower/bath time - humidity can bring on chest pain no matter what your diagnosis ends up being. I have (presumed as the queue for the test is so long my cardiologist is happy to say it's 'presumed') microvascular angina, Rheumatic Heart Syndrome (RHS), 'trivial' aortic valve scarring (from the RHS), and thanks to the recurrent pericarditis I have scarring-thickening-persistent pericardial effusion...any/all can be aggravated by a rise in humidity.

So, sit whilst showering (a hand towel spread over the seat provides protection from slipping off when soaping) and make sure the room isn't humid.

[MissCS in reply to Sunnie2day]

Wow 👍💕....you are God- sent Sunnie. These are really helpful tips. Thank God I found you here. I have been to the A&E a hundred times and all they say is you have long Covid infection. I have done all the tests...you name it and all they say is that the Covid really 'battered' your heart. Hopefully l will hear from the chest doctor soon. They are yet to give me another appointment. Initially they gave me July and I complained to my GP that l am suffering so l need to see them asap. I have severe asthma and that is also another problem. I am not breathless as l was in the beginning. I do wheeze a lot though when my chest is pounding. I will keep you informed...hopefully l get to see the chest doctor soon. Much love and respect to you for taking the time to help others like me. Hopefully we all become well and fit again. God bless you Sunnie 🙏

[Sunnie2day in reply to MissCS]

Bless you right back, MissCS about Long Covid, many trusts are now trying to set up programmes for patients with the condition, hopefully yours has one going and the chest medics refer you to it.

And again, please keep us updated on your progress.

[MissCS in reply to Sunnie2day]

Yes. Hopefully l will get sorted soon. Much love 💕

[Seajay in reply to MissCS]

Hi MissCS, I had Covid a year ago, not severe at the time but I've been ill ever since. As well as pericarditis, I also have found that my asthma is worse. I've had easily-managed asthma all my life. Since Covid, I've had 3 bouts that required oral steroids. Just out of interest, when did you have Covid, and did you get better before the pericarditis hit, or have you been ill continuously?And I hope the pain is easing for you.

Best wishes

[MissCS in reply to Seajay]

Hello Seasay, l had Covid in October and l am still struggling with chest pains, abdominal pains, shortness of breath. I also took 3 courses of preds and doxycycline. The chest pain is the more predominant...it comes on exertion. Any little movement l do, l get the pain. I had a second CT scan a week ago and l received a letter few days ago from the chest doctor that there is inflammation on my chest and he has booked me for a 2nd scan in 6 months time. My worry is I have not been given any medication to treat the inflammation so l am going to call my GP tomorrow morning and ask him. I take the usual painkillers but they don't help. Am frustrated as my job is my other worry now....l have been off since. Do you feel a bit better now. Is any medication easing your pains? Hope to hear from you. Take care.

[Seajay in reply to Sunnie2day]

Hi Sunnie2day, it's SeaJay again here. You mention RHS - I haven't heard of this. I developed rheumatoid arthritis symptoms a couple of years ago; had a heart attack whilst on waiting list to see rheumatologist, caused by SCAD - a tear in a coronary artery (can be caused by inflammation). Now I have pericarditis. I've also developed a mild leaky mitral valve. It seems unusual to get cardiac issues so early in my RA journey. Would love to hear more about yours; how long have you had RA, and when did cardiac issues start? PS my RA is not a confirmed diagnosis. Sero-negative. Waiting for results of MRI hands. Any info you can add? I'd be v grateful. Hospital told me nothing. I'm now hiring a carer and needing a wheelchair due to chest pain. Also diagnosed atypical angina (probably coronary artery spasm, common after SCAD). PPS SCAD stands for spontaneous coronary artery dissection.Many thanks, really appreciate your posts. And MissCS; I've had Covid too, March 2020.

[Sunnie2day in reply to Seajay]

Heart and RA were caused by a strep throat infection aged 6yo (back when dinosaurs were roaming, lol); no-one noticed and it progressed to rheumatic fever no-one noticed until I collapsed (oh boy then they noticed!!). As a consequence of the illnesses being untreated so long, the rheumatic fever went to my heart and joints, I was diagnosed with Rheumatic Heart Syndrome (RHS) aged 7yo and by 8yo they'd lobbed on RA.

My dad was a progressive parent, did extensive research and discovered studies indicating physical activities geared towards keeping joints supple and heart pumping seemed to be helping young RHS patients. He put me on a regime that has resulted in my being so 'near-normal' I was able to pass the physical for the USCG (1973, first wave of lady Coasties readmitted after they were all demobbed in 1946) and was on active duty 1974 through 1986.

My rheumatologist says I have the mildest case of RA he's ever seen especially for someone who has had the condition since the early-mid 1960s.

I'm not on any medication and even when the recurrent pericarditis is in a flare, I keep up the exercises for joints including knees, hips, and hands. So far so good as long as when in a pericarditis acute flare I don't overdo - crochet and embroidery for the hands, 'half-bike' for the knees and ankles, and 1lb curls for the elbows all seem to be low-strain on my heart and pericardium whilst keeping the joints supple. Really, to just look at my joints (especially my hands) you would never know I have RA and it's down to the exercises my dad put me on 50 years ago.

Take a trip down your memory lane to try remembering if you had 'something' back in childhood - you may have an illness that became RHS that no-one realised you had and now the issues RHS can cause are catching up.

Only a trained medic can determine that, of course, but if you can recall being quite unwell as a child, that is definitely worth mentioning to your medics and seeing if they are interested in investigating the correlation - a determination of an RHS correlation can make a difference in treatment plans and what they need to monitor as things progress.

Sorry for the long reply, feel free to copy and paste to a word.doc you can refer to later.

Let us know how you get on. Pericarditis is a wretched beast, I sincerely wish you the best in beating it this one time so it doesn't progress to recurrent. My recurrent pericarditis is down to being vulnerable thanks to the RHS but mostly down to a Stage2 case of Dengue Fever contracted whilst living in Guatemala during one of my husband's secondments there.

ETA - I tried to 'like' your comment but there seems to be a glitch still on from the weekend. sigh. Consider yourself 'liked'

[Seajay in reply to Sunnie2day]

Hi Sunnie2day, thanks so much for sharing this info. I was indeed a sickly child, had lots of throat infections but also lots of antibiotics. One time I had gastroenteritis, throat infection and appendicitis all at the same time, was off school for 3 months. Also asthma. If I get a chance, I'll mention that to the medics. I'm on annual follow-up for the valve regurgitation, which only developed last year. I've always been hypermobile, and my cardiologist thinks that is linked to my heart issues, although I'm negative for Marfan's and EDS.

So the pericardial pain is strongest on my left side, a couple of inches down from the armpit. The tender area is about 4 inches in diameter. When I overdo it (even talking) I get pain on left front chest and under left shoulder blade too. The thing is, I also get the side pain on the right side of rib cage, so now I'm wondering if I have pleuritis too. And all my bloods are normal!

Thanks for your kind wishes that the pericarditis doesn't become chronic. I hope not too, but I'm prepared that it might.

Best wishes,

SeaJay

[Sunnie2day in reply to MissCS]

OH! I just checked your profile (so I could start following your posts and keep up with any updates you create as a new discussion) - you write you have asthma. Be sure to check with your medic to see if your asthma is now worse following your case of Covid - asthma+humidity+the stress on your body from the Covid could be another cause of your chest pain when bathing.

[MissCS in reply to Sunnie2day]

The Covid definitely messed up my asthma. My inhalers were changed and other medication added. I will keep you informed of how things go with me. I am very appreciative of the tips you have shared. Much respect to you 💕 Look after yourself as well.