Pericarditis symptoms

[welshfairy]

I was diagnosed with pericarditis 3 weeks ago after being rushed to a&e with suspected heart attack. I have just returned to work and am struggling with fatigue and also have heart palpitations and a constant feeling of indigestion/heartburn. I'm waiting on an MRI but apparently this can take up to six weeks so I've been told not to exert myself until results are known. Are the above issues normal or do I need to go back to my GP? I had two weeks on colchicine but GP stopped this and i'm now just on ibuprofen. Any advice gratefully received as all this is new to me.

[Mary-intussuception]

Were you advised to go back to work after just 3 weeks?

[welshfairy in reply to Mary-intussuception]

Yes. Consultant said as I worked part time in an office it would be okay as long as I didn’t exert myself. I didn’t feel comfortable asking my GP for an extension to my sick note as the consultant didn’t think I would need any time off at all.

[Mary-intussuception in reply to welshfairy]

I would see GP

[CyclingGardener in reply to welshfairy]

I tried to go back to work after 5 weeks off and struggled 1/2 days now been off for 9 weeks and have another 2 week sick note. The fatigue plays A huge role in pericarditis in my opinion. You need to rest, rest and rest again.

[Sunnie2day]

I am not medically trained. But I have recurrent pericarditis (since the early 2000s), pericardial effusion, and pericardial scarring and thickening (from repeated acute bouts of pericarditis). What follows here is from my personal experience, and from reading on reliable sites like BHF, Chest Heart and Stroke, and several US sites like Mayo Clinic, Cleveland Clinic, Harvard Med. Put the kettle on (it's a long read), and feel free to copy and paste for reading offline.

Pericarditis is not usually a condition leading to hospitalisation, and it's not the best understood heart condition here in the UK. Doctors often don't know why someone gets pericarditis, and why for some the condition progresses to a point leading to A&E with heart attack symptoms - most people never even know they have pericarditis and write off the illness as a 'heavy chesty cold' or 'mild flu' as they recover without medical intervention needed within a few weeks of onset of symptoms. The illness can be caused by virus, bacterial infection, surgical or traumatic wound, blows to the chest, fungal infections, and other heart related conditions (I have Rheumatic Heart Syndrome, and 'trivial' aortic valve scarring in addition to the pericardial issues and they think the initial pericarditis was from exposure to mould made more complicated by the other conditions). Most often they have no idea how/where you got it.

For those cases like yours (where a diagnosis is made after a blue-light to A&E), when to return to work, and how long recovery may take often depends on the amount (if any) of pericardial effusion present. Usually the body clears the effusion within 6-8 weeks post event but you write you were rushed to A&E with a suspected heart attack, which usually means there was pericardial effusion in sufficient amount as to cause constriction to the heart which led to symptoms of heart attack.

Usually when the effusion reaches the point it causes constriction, the patient is in a condition called cardiac tamponade - which is usually relieved by a pericardiocentesis (long needle inserted to the pericardium guided by echocardiogram to aspirate the excessive fluid from the pericardium). The symptoms of cardiac tamponade almost perfectly mimic heart attack symptoms. The extracted fluid is usually tested and can give an explanation of what caused the pericarditis.

You are newly diagnosed after an event - proper care now will hopefully ensure you don't relapse, or go on to develop recurrent (chronic) pericarditis, and it does sound as though your medical care as regards your case is being managed well.

Your case right now is considered a one-off, or initial case; uncomplicated recovery usually takes around 6-8 weeks to feel well, and up to a year for residual ache (usually left side, worse when lying down or inhaling/exhaling) and fatigue after what seems very little physical activity to fully dissipate.

You've been given a limited course of the most commonly prescribed medication for pericarditis - Colchicine, and are now on only ibuprofen (presumably for residual pain?). Usually Colchicine is given short-term; some tolerate the medication well with good results, others (like me) don't tolerate it well at all and it's not prescribed. If you relapse or go on to develop recurrent pericarditis (which will be no-one's fault, it just happens some of us do, and some of us don't, and there really isn't much to be done to prevent that) you will be prescribed the drug again, and it may be for a longer course than the first one.

**The way I manage recovery from acute episodes:

Staying warm - but not too warm

Keeping indoor humidity down to under 60%

Eating using a well-balanced diet plan that includes plenty of fruit, veg, some meat, and 'healthy' snacks and nibbles (carrot sticks, diced fruits, popcorn, similar)

Not over-exerting myself - and that includes doing only the minimum housekeeping needed to keep the house presentable and hygienic but not magazine cover worthy - recovering is not the time to decorate the living room or start a huge DIY project

Getting back to pre-illness fitness by slowly reintroducing light exercise like short walks building up to longer ones, light (under 2kg) free weights, stretching, 'dancercise' (slowly, slowly) - but NO press-ups, NO sit-ups, and lay off the rowing machine until cleared by medics

Accepting I'm going to be useless after 9pm

Accepting my mental acuity is going to be 'foggy' during the recovery period - so no big life-changing decisions

**The way I manage my recurrent pericarditis is:

All of the recovery steps plus:

Avoiding heat and humidity in and out of doors - invest in a digital battery powered hygrometer (good ones are under a tenner) and if it shows your home is consistently high in humidity, invest in dehumidifiers for every room (not 'inexpensive' but well worth the money)

Avoiding mould

Restricting sodium and salt - DO NOT DO THIS WITHOUT CONSULTING YOUR MEDICAL TEAM, what works for me will often not work for you and restricting sodium and salt can actually cause further problems

Keeping a spreadsheet log (daily) noting pain, exercise accomplished, meals, BP, meds

All the very best to you for a full recovery without relapses or progression to recurrent!

[Hidden in reply to Sunnie2day]

" it's not the best understood heart condition here in the UK. "

In my personal view, "the medical community CHOSE not to" if that is truly the case. UK has the same level of expertise as in many other countries. But UK may have some dislike of "this type of condition".

Why UK has less awareness of this rheumatic condition? I would be interested to know myself.

You should also get paid by the NHS or BHF~!!

[Sunnie2day in reply to Hidden]

I don't think pericarditis is a rheumatic condition - only that having a rheumatic heart can for some reason correlate.

As for NHS choosing to not understand the condition better, I don't agree - I think pericarditis cases here in the UK are for some reason on the uptick and more GPs and cardiologists ARE becoming more aware. It's going to take time and experience with patients (like me ) but the awareness is growing and my cardiologist is educating himself about the condition to the point of contacting some of the doctors I encountered in Central America and the US Deep South.

Further, I don't see it as some sort of, I don't know, socio-economic or 'class' factor to pericarditis to cause the NHS to 'dislike' the condition and patients with it - again, for some reason pericarditis is on the uptick but there is no one cause or 'type' of person who gets it. It's not contagious, it's not got one specific cause, and it hits people from all backgrounds and environments. If anything, having a pre-existing heart or lung condition may predispose a person to develop it, but I know many with ONLY pericarditis and no other pre-existing condition, so even that theory can be challenged.

I will say this - my RHS combined with Stage2 Dengue Fever (Guatemala, 1994, and yes, they call it 'break-bone fever' for a very good reason) may be the reason I developed pericarditis two years after the Dengue (or it might be the exposure to weird moulds whilst touring the Mayan pyramid cities whilst living in Guatemala). There is a very high incidence of post-Dengue pericarditis in Dengue endemic countries. But the UK is not a Dengue endemic country, so...

As for being paid by the NHS or BHF, why would you say that, and I don't think they should have me on the payroll, btw.

[Milkfairy Heart Star in reply to Sunnie2day]

Very informative thank you.

My recent perfusion MRI uncovered that I have had myocarditis in the past.

I do love to collect unusual heart conditions!

[Sunnie2day in reply to Milkfairy]

OK, that definitely made me laugh (and wince - I don't mind reading about these conditions but I'm not keen on collecting them as in being struck with one or more!). Still, myocarditis is no picnic but I'm not surprised they only discovered you'd had it and so whilst acute your body must have done a good job keeping it from causing you to become unwell to the point of needing immediate intervention. Most myo patients do need intervention, it's my understanding it's usually a life-threatening condition.

[Milkfairy Heart Star in reply to Sunnie2day]

I think they were all very focused on my Vasospastic angina!

They didn't even consider myocarditis some of the symptoms over lap.

[Hidden in reply to Sunnie2day]

pericarditispain.info/peric...

Pericarditis is common in a number of autoimmune/rheumatic conditions.

It also runs in my family. Mother nearly died of scarlet fever as an infant.

It seems to have a genetic component.

I know nothing about UK's awareness on this condition.

I assumed what you meant was "not enough awareness" but it could go with a number of other conditions.

NHS is great with mainstream diseases. If it is slightly off their mainstream radar, their focus tends to stay within the main conditions, rather than diverting extra resources that do not exist.

[Sunnie2day in reply to Hidden]

Thank-you VERY much for the link! New to me info is always appreciated!

I had rheumatic fever as a child and was diagnosed as having rheumatic heart syndrome the following year. At the time the doctors told my father it might lead to rheumatoid arthritis as I was already showing some of the symptoms but not enough to make a definitive diagnosis. 50+years on I still don't have an 'official-official' diagnosis as my symptoms of it still aren't enough to warrant a definitive diagnosis, the best I've been able to squeeze out of a rheumatologist is 'Probably as RHS is present and has caused you other complications.'

RA is associated with pericarditis; RA is usually considered an auto-immune condition so I can see why it might be considered auto-immune on its own - but the endemic countries usually see pericarditis as a bacterial/viral/traumatic caused condition and tend to say only certain pre-existing conditions like RHS might-maybe-possibly predispose someone to develop it, and those endemic countries are where I first encountered pericarditis, and where I discovered the most information seemed to be available.

I don't understand why the UK is seeing an up-tick in cases but I do see an interest on the part of NHS (and private - there have been a few times I've used private care here to work out what is going on faster than the NHS queue affords). But you're spot-on, NHS resources aren't being allocated to pericarditis, and it is my feeling that lack of allocation isn't consistent with the up-tick in cases.

I want to be clear I am not complaining about the NHS in any way - just agreeing with you there is a dearth of information combined with what appears to be something of a dearth of interest regarding conditions like pericarditis. My feeling is the causes and successful treatment of the more stubborn cases of it are so varied and frankly expensive (for example, the invasive and hugely painful pericariocentesis ain't cheap and doesn't always give the definitive answer to what and why and how to avoid it relapsing/recurring) they give every impression of thinking 'So few people present with complications there's no point spending too much time and money on research...'.

Which really doesn't help those of us with the complications.

[Hidden in reply to Sunnie2day]

The way you write. . . I think you are "autoimmuner" like many of us. Autoimmune is systemic in nature. You care about the bigger picture.

"Rheumatology" is still the dark ages. They are not interested in systemic issues (which are life-threatening) except OBVIOUS/advanced joint deformities. Many RA patients are known to be ignored over decades until they are in the later stages i.e. failure in early/timely diagnosis and lack of timely treatment/chronic under-treatment.

Not all autoimmuners suffer from RA joint diseases, it can be solely systemic "Invisible" types, in fact, far more serious forms of the diseases, which are left unrecognised.

RA is known to attack organs. If you had a child-onset, joints may not be affected later in life as adult. As you commented, maybe, you did not have an extra environmental trigger.

Why Rheumatology is in denial about this? Politicians, me thinks. . . I also think ethical Doctors, who want to help patients are frustrated. It's quite demoralising for them, also.

Thank you for your posts/threads on this subject!!! It's absolutely WONDERFUL.

[welshfairy]

Thanks for all your really helpful comments. My symptoms got worse over night and I eventually managed to fall asleep at 5am. My GP has no appointments left today so has told me to go to an Urgent Care Centre or a&e. I think I need to get the correct medication agreed (I was taken off ibuprofen last week due to suspected dvt and only just gone back on it). I’m not sure if this is a continuation of the original diagnosis or whether this is now classed as recurring. Hopefully I’ll get the management of this under control soon. Thanks again. It’s good to know I’m not alone.

[Mary-intussuception in reply to welshfairy]

Did they give you a Heparin injection for suspected DVT?

You could ask for a full diagnosis? ?

Hope you get sorted with appropriate care soon.

[Sunnie2day in reply to welshfairy]

You are definitely not alone here, there are a number of us on the site enduring pericarditis. Please keep us updated. I've found using the search feature here using the condition as the search term brings up several interesting discussions and I learn something from each one. All the best for you to have a soon-as recovery, and that it doesn't/hasn't progressed to recurrent.

[Maya23]

I had Pericarditis back in June, but has taken a long time to settle. I can relate to the fatigue you describe and find that any overexertion triggers more chest pain. I also developed feelings of indigestion/heartburn, ironically it was caused by taking Lansoprasole every day (my GP explained that it suppresses stomach acid initially, but your body responds by making more stomach acid!). I’m better for coming off that tbh (it’s completely gone!) even though some days I still need it if I’m taking a lot of Naproxen (NSAID).

I’m also getting periods of rapid heart rate, noted by hospital as well as GP and I’ve been offered beta-blockers.

I’ve had several flare ups of chest pain since June (seen inside of several ambulances!) but all those times Troponan levels weren’t raised like it was the first time.

Have had heart echo x2 plus CT angiogram (all reporting normal heart function) and I’m still waiting for chest MRI in November. The tests seem to take a long time to get through the system. Have you seen a cardiologist yet?

[welshfairy]

So I attended A&E as suggested and, to cut a relatively long story short, my ecg is “better than it was 3 weeks ago” when I was first diagnosed. I’ve been put back on my initial medication, a cocktail mix of colchicine, paracetamol and ibuprofen, for the next 2 to 4 weeks depending on how I get on.

The doctor also said the initial inflammation hadn’t cleared up and the new treatment should get everything back to normal. I asked what I should do if I get any further flare ups ie. call doctor, go to a&e or just put up with it and he said it was highly unlikely I’d get any further issues as it rarely reoccurs. It’s a one-off incident. He has never had to treat anyone for a second time. This seems totally at odds to what I’ve read on various respectable websites and from comments on here. It would be great if this medication sorts me out in the next few weeks, however, if not, what do you all do when you have a flare up? I don’t want to go to a&e if I don’t need to but I assume my doctor needs to know? The last thing I want to do is panic as that just makes it worse.

[Maya23 in reply to welshfairy]

As you’ll read in my reply above, I had several months of Pericarditis flaring up and calming down again. Every time I talked to a GP or called 111 they would send me back to hospital in an ambulance. No one wants to be the one to have missed a heart attack. Unfortunately there didn’t seem to be a way to avoid this, but I was reassured every time I was seen and tests showed no problems with my heart.

[Sunnie2day in reply to welshfairy]

I agree with Maya - if you feel symptoms, call the GP or the cardiology team - every time. Better safe than sorry.

As for coping with another acute flare, see my earlier (long, soooooo long, sorry!) post listing all the ways I recover and then avoid a recurrence.

[HHH2017]

Hi welshfairy, I had myopericarditus (myocarditus & pericarditis at the sane time) 2 years ago and was hospitalised for a couple of weeks. Every case is different but you do seem to have returned to work very quickly. My best advice is not to rush back to your normal routines too soon. Rest is REALLY beneficial to a good recovery. Your heart has experienced a major episode and needs to recuperate. Rest and relaxation, doing nice gentle exercise and slowly building up to ‘normality’ is the way to go. Good luck on your recovery.

[Sunnie2day in reply to HHH2017]

Blimey, both together, yikes!

[Andrew_Adams]

I’m just out of hospital with diagnosed Pericarditis. First heart issue I’ve had. Have a pericardial effusion present in my left atrium - 4cm of fluid! All confirmed by echocardiogram after a rush into A&E with some serious chest pain!!

I had with symptoms for over a week (now I know what they are)

Heart working ok thankfully with BP ok.

Cardiac team seriously considered doing a drain but opted against as heart seemed to be coping ok vs this risks.

I’ve been prescribed colchicine and I’m taken ibuprofen.

Been told to take thing really steady and just rest!

I really concerned and feel so venerable!

[welshfairy in reply to Andrew_Adams]

So sorry to hear you’ve joined the “pericarditis” clan! It is very alarming at the beginning and I suspect you’ll feel absolutely dreadful for the next few weeks. I’m now 3 months down the line and feel much better although still have to be very careful not to exert myself. I’m currently waiting on results of a cardiac MRI which I hope will give me the all clear to start exercising and getting my life back to normal. My advice would be to take things extremely slowly. Trying to do too much too soon will probably see you back in a&e. Give yourself some time out and rest. There’s lots of good advice on these pages so just spend some time doing a little research on the subject, it’s reassuring to know you’re not alone.

Take it easy; you’ll be okay.

[Andrew_Adams in reply to welshfairy]

Hi, thanks for your reply.

Indeed very alarming and scary place to be. I’m all over the place with it all at the moment. Ive not had any further pains - so far so good and feet up it is! It’s good to hear yours and others positivity and advise.

Having looked at some of the pages on here the colchicine sounds to work? Hopefully will for me too. I’m taking ibuprofen and steroids also.

I hope your receive positive results very soon on your MRI.