Pericarditis & Exercise Advice - I'm new here

[flockofseagulls]

Hi, I am a 26 year old male. I was admitted to Hospital with pericarditis in 2018. This was likely caused by a previous viral infection. Troponin was mildly elevated and the echocardiogram showed a bright pericardium but everything otherwise was normal. The only symptoms I have ever experienced because of this has been a sharp pain in the left side of my chest. This has been the case every day for nearly 3 years now with fluctuating levels of intensity. I was discharged home with colchicine therapy and a recommended MRI scan after 5 years.

I have described my ongoing symptoms with 3 of my local GP's whilst requesting a referral to a cardiologist. However, all of them have insisted that there is no need for me to see a cardiologist and it has been suggested that nothing further can be done to help me.

With this being the case, I have been very keen to ask if it is safe for me to return to high level exercise as sport was huge part of my life before my diagnoses. Despite the fact my symptoms noticeably worsen when I have attempted to increase my activity level, I have been ensured by a GP that I am free to go ahead and physically push myself as much as I want.

The problem I am having with this is that I cannot seem to find a shred of evidence online that supports the idea that strenuous exercise is advised whilst pericarditis symptoms are on-going. This has left me fearing sport rather than enjoying it.

What I would really like to know is if there is anyone else who has on-going pericarditis symptoms who has returned to sport in a way my GP has suggested I could. If any research or articles to support this idea could be linked would be great too, as so far I have only found websites that go against this idea.

Also, I would like to know how normal it is for someone to take colchicine for such an extended amount of time without any positive results.

If you've taken the time to read this and have some information to help me, I would be extremely grateful.

[LillyMac]

Hello

I’m surprised that your GP will not refer to see a cardiologist if you are still experiencing symptoms despite being on colchicine for three years. If exercise is inducing chest pain, and you are on treatment for a heart related problem, then you should be given an ecg, blood test and be checked over.

I have seen gp’s over the years that have told me that I don’t need to worry as I don’t have a problem with my heart - which proved to be totally incorrect. I didn’t have any ‘risk factors’ and so didn’t seem like a likely heart patient.

Consequently, I was diagnosed with a rare disease that has now affected my heart. I have had repeated episodes of pericarditis. I also have microvascular angina and suffer a lot of episodes of chest pain. If I get pain that doesn’t resolve then I have to get checked out - as per advice from cardiologist and gp.

My point is this - you are responsible for your own health. If you feel something isn’t right then you should insist on being checked over. Chest pain on exercise, despite being on long term therapy for pericarditis, should be checked out. That is unless, of course, your GP has special powers and can perform the necessary tests just by looking at you!!

[Schora1]

I have idiopathic, recurrent pericarditis along with effusions which I’ve had for 15 yrs. Advice is always rest and keep the heart rate below 100bpm. I’ve been on Colchicine now since March 2019, although I can only tolerate 1 x 500mcg per day. I am rarely without pain or breathlessness and have 3monthly consults with cardiology, Rheumatologist and also under the Royal Free amyloidosis team. Not all doctors are knowledgeable on pericarditis and brush it aside. I would push to be referred to a cardiologist or if you can even pay to see one privately. I worry if you begin vigorous exercise you may make your pericarditis worse and require a visit to A&E.

[IrisCarter]

My GP and a private cardiologist both told me not to worry about symptoms that I was havng but I remained concerned enough to get a (private) second opinion from a professor in cardiology who specialised in arrythmias.I was diagnosed with a rare sudden death syndrome and had to have an ICD. If I had followed the advice of the other Drs I would probably not have survived. I loved sport and was very active - a known trigger for my arrythmia. It was the best £200 I ever spent.

[Sunnie2day]

Put the kettle on, I'm about to give you the run-down on pericarditis - feel free to copy and paste to a word doc you can print off and post on the fridge for quick offline reference.

No nice way to put this - you need to change GPs and you need to do it soon.

What you are describing is recurrent pericarditis - but only a qualified medic can diagnose it. You write a recent echo showed 'bright' - that is an indication of pericardial effusion and most medics will want to monitor it - I'm on an annual echo monitoring rota as I have some scarring and thickening as well, your 'bright' really should be monitored (to gauge amount - look up 'cardiac tamponade') as should your Colchicine prescription (for long-term toxicity issues).

There is a Facebook group (I don't use that social media outlet so I can't link it for you) many find extremely helpful including exercise and medications.

I can't take Colchicine after the first time in the early 2000s resulted in every side effect including nearly going into organ failure - I cope with lifestyle adjustments and aspirin. I also have (presumed) microvascular angina and am on a once daily Bisoprolol (beta blocker) 1.25mg+300mg aspirin and for some reason that does seem to help the recurrent pericarditis acute flares be less painful in addition to keeping the MVA to a very dull roar.

Everyone is different and only a competent medic (cardiologist with pericardial experience OR a fully qualified pericardial specialist) can determine the best medications for your particular presentation of the condition.

The most helpful 'tip' I can give you is you need to change GPs, get seen sooner rather than later by a cardiologist with pericardial experience (not all do) even if it means going private - many will see you the first time then shift you to their NHS list (mine did). You may be fortunate enough to live in a trust area with pericardial specialists - do a search, if you have one near you, give serious consideration to booking a private appointment.

Following is my 20+years experience method of coping:

**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 - absolutely NO 'pushing' to regain fitness, it only leads to relapse

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

[citygirl65 in reply to Sunnie2day]

hi interesting readmany thanks especially the mould and humidity section im living and have been living in damp house 17half years docs wont write medical note and all passed back to housing each and everyone of them,, even to the extent this year gone through whole house and furniture etc...not great looking to try move to better area..many thanks.

[Elaine101]

Hi, I totally understand where you're coming from, I was admitted to hospital Dec 19 with a large effusion. My pericarditis was related to crohn's meds,(although still not confirmed) Like you I was extremely active, no previous heart problems or issues.

Still struggle with exertion, and can't push myself, I have had more cooperation from respiratory( I had a PE last May)

She has been amazing, organised another ECG, CT scan and I'm waiting for a stress test as that's my concern.

I don't want to overdo things and put my heart under pressure, even though cardiology say everything is fine.

You know your own body listen to it, I know when I've done too much so I've learned to slow down.

I'm sorry for your diagnosis, it's not easy coming to terms with, especially at such a young age.

Slow and steady is my advice, eat well, avoid the heat and keep well hydrated!!!

Good luck, the pericarditis FB page is very informative and so many young people like yourself. You will no doubt find lots of help and advice.

[citygirl65]

im new myself i couldnt take the colchince it made me waterworks bad ,literally up and down stairs every time i just sat down to loo again after two hours decided that wa s not for me stairs not good and ckd...not good for kidneys...still experimenting took ibrofrofem for a month ,,not good either ..so still got to find ideas etc how to deal with this condition it has slowed me down lots...not good health or mentally, isolated ..good luck with it all sorry not enough advice but took time to read your blog.