I didn’t have a heart attack but being diagnosed with pericarditis. Told to rest no meds any advice please

[MRocks]

Pericarditis advice

[Sunnie2day]

I have recurrent pericarditis (one of my multiple heart conditions) and am currently recovering from an acute flare a year ago. Before I give you coping tips (I've got more than just a few as I've had recurrent pericarditis for over 20 years and managed to go close to 15 years without a flare) I have to ask a few questions:

Are you in the UK?

How were you diagnosed - did a medical professional listen to your heart through a stethoscope? Was a chest x-ray done? Did you have an echocardiogram?

Did you have a blood test to see if there is infection associated with your case of pericarditis?

Have you been told how serious (or not) your case is?

Were you told you have pericardial effusion? If yes, were you told how much fluid has accumulated in your pericardial sac?

You write you've not been prescribed any medication. I know that can be worrying for a newly diagnosed pericarditis patient but it's not all bad - if you've had the above tests including the blood work, no prescriptions usually means no infection and either no pericardial effusion or a minor amount the medics deem 'insignificant' (although trust me, even an insignificant amount of effusion can be rather uncomfortable!).

General tips for coping:

**Sleep with your upper body elevated - either several pillows, or a wedge pillow, or an adjustable back rest (I have links to reasonably priced ones I'll post if you're interested)

**Avoid sleeping on your left side as the pain is worse if you put weight on the inflamed pericardium sleeping on your left side

**Try to get at least 7 hours sleep per night. Eight is better but 7 is good

**Avoid heat, humidity, and mould

**Avoid strenuous activity

**Keep to a nutritious well balanced diet with lots of green leafy veg, fruit, and high quality protein like meat and cheese (but try to keep to a lower salt content if you have effusion - don't go overboard on lowering salt intake but try to keep it under 5g per day)

**Be alert to symptoms your condition is worsening - 'swinging fever' where it's high, then lower, then higher again in a matter of hours over a day; shortness of breath on slightest exertion and/or waking you in the middle of the night; night cough or cough when lying down; 'fat fingers' and other signs of fluid retention - these are signs of building pericardial effusion that could lead to a condition called 'cardiac tamponade' - when excess fluid build-up in your pericardium reaches a level that is beginning to affect heart function (like, beating). It is a life-threatening condition. Been there-done that-got the little scar from an emergency pericardiocentesis (echo-guided needle aspiration and if they have to do it in A&E, the anaesthesia doesn't always have time to take effect). If you have any of the signs of worsening condition you need to report those signs to the medic.

Most patients with a case of pericarditis requiring medical intervention clear the condition within three months of seeking medical attention and being given a diagnosis IF the patient follows directions and medical advice to rest and avoid strenuous activity.

It's considered a rare illness in the UK; doctors don't see it all that often so they've not got a lot of experience with it - many cases are never even diagnosed as most get it and recover without complications that lead them to seek medical attention.

A gout medication called Colchicine is often prescribed for pericarditis as it's shown good results in most patients - but some (like me ) can't tolerate it. If you are in pain (and you likely are, pericarditis is not a painless illness), ask your doctor if you can take paracetamol or aspirin (aspirin is my pain relief of choice as I don't tolerate paracetamol well).

You and your medic may find it helpful for you to keep a twice daily log of your temperature and symptoms.

Feel free to copy and paste this to a word.doc you can then print out and post on the fridge, you'll find it very helpful to have the reminder on a central offline location.

[Hidden in reply to Sunnie2day]

Thanks Sunnie2day, that's super informative. Had my first instance of pericarditis starting Feb. Hopefully last instance, but not counting on it, given what I've read. And yet, your detailed post gives me hope of not getting this recurrently.

Your coping strategies are particularly appreciated. Any thoughts on follow-up Q's ?

My biggest question - how strenuous is strenuous ?!

I know we're all different, but others' experiences really help narrow things down.

I got the pericarditis in the final stages of training for a BHF charity trek (oh the irony!) I suspect it was a mix of being 10m after my open heart surgery, lots of training (6hr day hikes) and getting a bug (virus, chest infection or both). (NB I'd very carefully increased the hiking to this level over 4-5 mths, it wasn't a shock / new thing, but I do wonder now if it was maybe a cumulative stress).

Docs prescribed ibuprofen (3wks), furosemide (2wks) & colchicine (3-6 mths if I can tolerate it, thankfully I am so far). And of course no strenuous activity, incl. cancelling trek . But they obviously found it hard to specify, and when I said "should I do not more than 80% of what I did before?" they said yes - but I think that would still be too much. Pre the flare, my typical week was 10+ hrs hiking, 2h yoga, 2h CV or strength training, and I can't see it makes sense to do 80% of that yet.

Clearly 6hr hikes are too strenuous & are out, but I'd prefer not to stop exercise altogether. I just don't know how to gauge what is moderate / gentle enough, and I've learned that my heart only tells me a day or two after if I've done too much !

I've rested almost completely for 2 weeks, and 10 days ago I started back with gentle strolls. I'm now at things like a 20-40 min slow swim, a 50-70 min walk on the flat, 20 mins stepping machine or very light weights. I've focused on keeping my heart rate below 120 (I'm 52yrs old), and to progress gently (adding no more than 10 mins each next time).

How does this sound to a more experienced (sadly for you) pericarditis patient?

Other tips that made me curious:

1- why doe enough sleep help? General healing & letting the heart rest, like all heart recoveries ? Preventing further inflammation?

2- why humidity - avoiding excess water vapour in the lungs?

3- why heat - makes the heart rate increase ? increases inflammation?

Welcome hearing any experience you have, of doing some level of exercise whilst still avoiding a flare?

Thanks in advance

[Sunnie2day in reply to Hidden]

Sleep is healing - all your body has to do when you're asleep is concentrate on refreshing or repairing everything.

Heat and humidity, well, the quickest way to describe why is to say having an heart condition and/or a case of pericarditis and being in a high heat and humidity situation (like a steam bath, hot tub, long hot shower, out of doors in hot-humid weather) is exactly like trying to walk chest high through a warm rushing river against the current.

It makes your body work harder to maintain body temperature and heart rate, and for some pericarditis patients (like me) it can actually cause the pericardium to draw even more fluid to it, thereby increasing the amount of effusion if present in the first place.

You write you are or were on furosemide (a diuretic) and from personal experience I know they usually prescribe that to reduce present effusion, and to hopefully work with the Colchicine to prevent more fluid accumulating in the pericardium. But it works much better if not burdened by being asked to add heat and humidity related issues to the work.

As for gauging how much physical activity is wise, it depends on: the severity of your case of pericarditis, how fit (or not) you were before onset, and probably most importantly, how long it takes you to recover from pain (pericarditis can cause angina-like symptoms in some patients - like me - on exertion without warm-up before the exertion) and shortness of breath episodes, if any (any pain and/or shortness of breath should be reported to the medics as one or both could mean complications).

It sounds as though you're on the right track with your exercise regime. Sadly my fitness level is no-where near where you have sensibly progressed to (envy attack, envy attack! ) but I do the same thing of carefully and gradually increasing to rebuild fitness.

Once a flare is fully cleared, it takes me several more months to regain pre-flare fitness levels. I'm 63, though - your return to full fitness will very likely be much faster.

ETA: as I'm 'just a patient' and not a trained medical professional, I wouldn't chance saying what caused your case - but as you write you had a bug (virus or other bug), you're probably safest thinking it might have been the bug rather than a post-op case (some OHS patients do get pericarditis as a consequence of the trauma opening the ribs and chest cavity causes but I think that complication comes far sooner post-op than the ten months you cite having been when you developed the pericarditis. I could be wrong - I'm not trained, and the only advice on that you should trust is from your medical team).

[Hidden in reply to Sunnie2day]

Thanks again. Wading against current, like it. So, my guilt/worry about coming on holiday to heat & humidity is largely offset by fact that being away from home is making me rest much more fully !!! And I’m staying in cool room most of day, reading.

I recovered relatively fast from the horrid pain (maybe the big ibuprofen doses helped!), but echo showed effusion for quite a few more days after that. Shortness of breath is almost gone (but still a bit wheezy rolling in bed at night, of all things). They want to re-check my echo 2m on.

What are your signs that you’ve “fully recovered” from a flare?

I thought I’d recovered from the first mega pain but because I though it was just a bug & didn’t know what it really was first time, I started hiking again, only to bring it back on. Clearly I hadn’t fully recovered, or was still highly triggerable.

I also thought it was too long after OHS to be relevant when docs said that. I had autoimmune blood tests but haven’t heard results yet.

Thanks so much again, its sad you’ve had another flare but I’m grateful for your experience.

[Sunnie2day in reply to Hidden]

After being diagnosed as having recurrent pericarditis (early 2000s), the only way I know now for certain if a flare is cleared is if an echocardiogram shows the effusion is gone.

I was going to the GP surgery once a week for the practice nurse to listen to my chest (left side and towards my back) for pericardial friction rub sound - presence means still not cleared. But the coronavirus concerns has the surgery asking 'vulnerable' patients like me (having pericarditis means being on that vulnerable list) to stay away from the surgery and telephone if symptoms worsen. I've not been to the surgery for several weeks now.

So for now I'm sticking with 'Has the wheezing stopped', 'Am I still having periods of shortness of breath and/or pain on exertion', and 'Am I feeling more energetic, even the slightest bit' sort of gauge for 'Am I getting better/is the flare clearing or completely cleared'.

About the wheezing - as with pain, lying down seems to bring on wheezing, as does sitting on a lounge chair at a semi-reclined attitude. If I stand up straight the wheezing stops but if I lean back or lie down the wheezing happens. I'm not surprised you say you have wheezing 'rolling in bed' -- for pericarditis patients who develop a wheeze, that's when it happens most noticeably.

It could be worse. Lol, several months ago I was on a queue at the supermarket and the woman behind me asked if she could help me find my inhaler - she thought I was in the midst of an asthma attack owing to my shortness of breath and loud wheezing. Thankfully the shortness of breath and loud wheezing has stopped. Mostly. As has the pain.

[Hidden]

Hi MRocks, how are you doing? I hope you're not in pain & it was a mild instance with a quick recovery. Let us know how it's going

[MRocks]

Hi Both, thank you for the replies I shall use the tips. I was told I’d had a heart attack in resuss. So had an angiogram who immediately said I hadn’t a heart attack. Bloods were normal so had ultra sound and ct scan targeting the aorta all normal. ECG on ambulance and in resuss both showed signs to heart attack.

Docs said I should recover.

I’m in the same boat of what’s pushing it too hard as usually run 5k a few times a week.

I’m listening to my body if it hurts stopping, which is a slow plod around the house at the minute.

Went to Gp who’s given me Colchicine.

Take care both

[Hidden]

Wow MRocks, that’s a confusing mixed diagnosis! Hope you get some clarity over time. And keep pottering about the house, I did that for months, it does work & improve.

If the bloods (tropin & d-dimer levels?), the CT and angiogram were all normal, then I’m not sure how ECGs alone could confirm a heart attack (but I’m no medic, just going on what I’ve been told after my various tests).

And if the echo is normal as well, again not sure how pericarditis came into their minds.

If it’s just the ECGs that are saying something wrong, could it be a heart pacing issue? Heart block? sorry if I’m wrong & diagnosis is clear, it just sounds muddled to me.

What symptoms did you have before you were in resuss?

I expect there’ll be someone here who’s had similar, & may be able to offer their experience. Maybe start a new thread with symptoms in title.... ?

[MRocks]

Prior I had high BP for a few weeks and was due to go GP the week it happened.

When it happened I felt on fire, sweat beading off me. I tried standing room span. I went grey. When they got me on ambulance the ECG they said was in line with heart attack. On route I was violently sick. In resuss I went through those symptoms again.

I’m still getting pain in my chest dull pain. But every now and then sharp pains to my left or middle chest. I get out of breath very easily.