Hi everyone, if you’re reading this I hope you’re well and safe. I don’t know what I’m looking for, I guess some advice as I feel I’m going crazy!! I’m 27 and I’ve been struggling with chest pain for some months now. In January was taken into A&e due to abnormalities on an ecg done by paramedics. Anyway long story short, I’ve been back and forth I’d say probably 3-4 times due to this, I keep getting told that I may possibly have pericarditis due to something on the ecg, however blood tests and X-ray came back fine. Some doctors say it’s muscular pain, following a recent visit I’ve been advised to take ibuprofen for the pain and have finally been told I will receive a referral for and echocardiogram I believe. I’m just worried I guess because I don’t actually know what’s wrong with me I’ve just been told ecg shows signs of pericarditis by all doctors I’ve seen. I have pain on the left side, it radiates into my left arm and it used to come and go but now just seems to be there more constantly. I struggle at night and have noticed I seem to sweat a lot to a point my clothes and bed feel wet! I’ve also noticed pain in my shoulders and neck, sometimes lower back. I find myself gasping for breath or in pain when doing small activities, cooking cleaning etc, I have no idea what to do, as I don’t want to keep calling 111 and being referred to A&e to be told that bloods and X-ray are fine and slight abnormalities on ecg that shows signs of pericarditis but no official diagnosis. Can anyone give any advice please? Feel like I’m loosing my mind!!
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Barios
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Hi Barios, if your symptoms have changed you should ring 111 today and at least your doctor tomorrow. I hope you get sorted but something seems wrong to me with your new symptoms. Don't worry about 111 that's why there in that job. Regards Sheena
So sorry you’re going through this, especially at 27. You’re not going crazy, many pericarditis sufferers have problems getting diagnosed. Not many medics know much about it, it is often missed completely. If it is Peri, at least you’re on the beginning of a path with referral.
Glad you’ve been referred for an echo, that is important. They will look for fluid collecting in the sack around your heart. This effusion is a typical, but not guaranteed, finding with Peri. The slight challenge may be, if the echo isn’t for a while, any fluid may have reduced & the echo may look ok.
My sense is that Peri is often diagnosed by eliminating other things. They may have been assessing for heart attack, angina or other things first, and if they are ruled out, looking at Peri.
Whilst it can be hard to get a diagnosis, if it is diagnosed there are meds that help and the majority don’t get it long-term. It is important to get the meds as soon as poss, to reduce chances of it becoming recurrent. Sometimes the diagnosis is as much about trying these meds, if safe, and seeing if they work !
I’m not a doctor, but in case my symptoms, tests & meds give you a basis for questions to ask your doctor -
Compressed, heavy feeling in chest. Strange pain on inhaling, like a rasping, tightness or sore throat. Worse in cold wind. Shortness of breath, even just going up the stairs. Heart starts racing with slightest exertion. Mind-blowing pain in upper body, for me neck, shoulders & back (this is ‘referred’ pain, as we don’t have nerves to tell us the heart is in pain). Symptoms worse in certain positions, incl. lying on my back, or trying to turn in bed.
Tests: no comment on my ecg. Bloods showed tiny troponin (chemical that suggests damage to heart, often used to spot heart attack). Chest x-ray should some fluid somewhere, either lungs or heart or both (it was both). Blood test called C-reactive protein or CRP was very high, showing infection or inflammation or both. Echo showed fluid in sac around heart. Blood tests for various viruses, which can be the initial trigger. Blood tests for autoimmune conditions which can also impact. Note, any of these may be absent or present, I’ve since learned, as causes can vary, eg not everyone has high CRP or fluid. That’s why they have to be told the full symptoms too. Chest pain that’s worse with breathing and/or lying down is a likely signal.
Meds: a diuretic (water tablet) to help clear the fluid. An antibiotic to clear pneumonia. Large ibuprofen for a few weeks to get anti-inflammation started (see below). Tummy protector alongside. Then 3-6 months of a drug called colchicine (col-sh-seen), first designed for gout, but a good anti inflammatory for this now.
So as well as pain relief, ibuprofen is sometimes given in larger doses as an anti-inflammatory. You could ask your GP about that possibility (via phone?) based on the tentative diagnosis. It would be a strong dose, so you must get medical advice before doing it, and get a tummy protector (or PPI, like omeprazole) to take alongside. If a medic agrees, you might find it starts to tackle the cause (inflammation) as well as the symptoms (shortness of breath & pain on breathing).
Meanwhile, my biggest tip - rest, rest, REST ! Much more than you think you need to, because the heart doesn’t get to stop like other muscles if damaged, you’ve got to let it have an easy time all day &night, if it’s going to heal. Advice suggests keeping heart rate under 100. Which for me meant going up stairs at snail pace, or not at all ! No exercising, only strolling, and that only if you can without heart getting fast. Avoid getting too hot, keep hydrated (which seems counterintuitive but it helps your heart work less hard).
But overall, if it’s Peri, which sounds very possible, then it’s highly unlikely to be life-threatening (tiny chance the heart gets squeezed too much, but think they’d have seen in x-ray & bloods). It can impact quality of life for a time, hopefully not long term, and is a right pain (literally) whilst in a “flare”. But my anxiety has slowly quieted, as I’ve learned about it and seen that it isn’t killing me, it’s just my body over-reacting to something (probably chest infection for me) and getting a bit un-balanced. It feels awful but isn’t terminal, the thing to try to watch for, is to get meds that hopefully stop it becoming permanent. I know how frustrating it is though, hang in there.
- Facebook groups for (1) pericarditis and (2) uk pericarditis, though bear in mind, many there have it long-term, so don’t let it dishearten you, 70-80% of people only get it once.
TealGreen has pretty well covered it. The only thing I can add is the scan may show 'minimal pericardial effusion' - and that may be causing your pain. I have 'minimal' pericardial effusion that untreated was causing me pain and it took months for my cardiologist to reluctantly agree it might be the source of my left side pain (all the same symptoms you're reporting here). The effusion is so minimal he has no plan to go in and drain it off. Oddly, the pain is so well controlled by the beta blocker I'm on for 'angina with normal coronaries' it's 99.9% gone - the effusion is still there but it no longer hurts 24/7.
TG is spot-on - pericarditis is so rarely seen by clinicians they often don't recognise it, and when they do, they rarely understand it can cause precisely the symptoms you're reporting here. The scan will hopefully make them sit up and take notice - you may be prescribed the standard pericarditis medication Colchicine but you may not so be sure to ask about the efficacy of taking it now considering the length of time you've been unwell.
Pericarditis usually clears up after 6-8 weeks but yours is lasting longer and needs investigation and possible Colchicine treatment (not everyone tolerates Colchicine, I don't so I just soldier on). Believe me I understand exactly what you're going through - I've had recurrent pericarditis since 1998.
Try sleeping on a wedge pillow or a V-pillow on a regular bed pillow so your upper body is elevated and if you are a side sleeper you should always sleep on your right side to relieve weight and pressure on your pericardium; avoid mould, heat, and humidity; eat a healthy diet and get at least seven hours sleep per night.
And most-most-most importantly, listen to your body - shortness of breath and any increased pain should tell you to stop what your doing and sit down for as long as it takes to recover.
Again, the scan should reveal what is going on and hopefully your area has a good supply of cardiologists who are either pericardial specialists or who actually understand pericarditis. Until then try the things I've suggested to make your life a little less painful, and remember this - it can take a very, very long time to recover from an acute case of pericarditis. My latest acute flare took close to 12 months.
The link to the Mayo Clinic online pages about pericarditis is very helpful. Print it and keep it to hand.
This has been a interesting read as I’ve been struggling with left pain, breathless where I gasp also swelling to the left side, I did have heart attack with 2 stents fitted two years ago, they thought it might have been Costochondritis or Tietze syndrome but it’s now been over a year in & off but the last 4 weeks it’s constant, I have a appointment fingers crossed next week to see respiratory clinic do you think I should mention it
Hi Passes, worth asking Q’s of your doc, but wouldn’t suggest using my notes too far without docs! I’d say keep a symptom diary for the week, noting every time you feel anything to do with breathing, heart rate or upper body pain, including what you were doing, where you were and time of day, and what type of pain (tho I always struggle with that Q!). Then summarise the key symptoms to docs and ask if they have / need to check for pericarditis.
With your previous experiences, I’m not sure if it could be something else, as I think I heard someone had similar symptoms but from partial artery blockage. Also not sure if respiratory clinic would be able to diagnose it without cardiology input. If you have a cardio nurse you can ask Q’s following your stents etc, give them a call?
Thank you for reply I am still under cardiologist & he did recommend seeing respiratory clinic I do have partially block archery but heart was working ok until stressed so we’ve discussed holding off another anagram till they have checked my lungs, but with all this covid things understandable delayed, have been keeping diary also written questions to ask as this time I need to go in on my own
Hi everyone, thank you so so much for the responses! They’ve been really informative and helpful, I’m somewhat at ease. I spoke to a doctor this morning and explained my symptoms this is something I’ve always struggled with too, how to explain the pain, (it was a different doctor to whom I previously spoke to) to be fair I don’t think I’ve had the same one, anyway he recommended just continuing with the ibuprofen and adding paracetamol to manage the pain, he couldn’t really give any further advice and said would have to wait for the echo. I have also been signed off for another two weeks based on my symptoms (I’ve already had two weeks off work). Hopefully with all your advice I can manage the pain until I know more. They haven’t done an MRI, just ecg, bloods and and X-ray when ever over been to A&E. Fingers crossed will get to the bottom of this as still waiting on the referral letter with a date. Thank you all so much for the resources, it hasn’t been easy especially as I live alone and anxiety starts to Creep in at night! Thank you once again I can’t tell you how helpful you’ve all been, please keep well and stay safe! X
Nights are the worst -prob can’t sleep, but can worry!
I found listening to an hour of nature sounds (waves on seashore, birds, rain) was a good “white noise”, helped my brain latch on something else, till I maybe dozed off.
There’s usually someone live on the Facebook grps at all hours as it’s global, the friendly ppl help me worry less.
Also forgot to mention, at night I used a hot water bottle on my chest/tummy, seemed to help (though it seems like the opposite would be better for inflammation).
I found a very well ventilated warm shower (to avoid humidity) aimed at the left side of my chest just before going to bed very helpful when I'm in an acute flare so your hot water bottle makes perfect sense to me. So perfect I'll go for a hot water bottle next time. Thank-you for the tip!
You are not losing your mind I have been to a and e 5 times since April with chest pains arm and chin left side all tests were ok echo ok even had a ct scan every time bloods ok and all docs are saying poss pericarditus no def diagnose as I type this I have chest pain the only other thing I had wrong was end of March I had covid pos test and some of the doctors are saying this could be the after effects so not sure how long this will go on for
Barios & any others with Peri reading here - make sure you ask your Dr about colchicine, an anti-inflammatory drug - really makes a difference, but not enough Dr’s know to give it. If given ibuprofen only, it looks to me (from FB group) that recurrent episodes are more likely.
Barios did you get your echo yet? I know cardio appts have been backlogged, hope you get well soon.
Hidden , Peri is a known typical after effect of covid. You still need the normal Peri meds/treatment I’d imagine, but may not get it unless you can get a cardio follow up? Tests often very unclear. How’s your breathing, that’s the most typical symptom area?
Hi yes have colchicine and it does work if you can stand the side effects but I also have statins which make taking colchicine an interactive drug so can be not good long term so I take half dose and only few days but I must,say still having slight pain in jaw neck and arm but I'm sure it's going or I'm getting used to it have not returned to any kind of activity yet just gone back to work but being wary of doing too much I'm a mechanic so difficult to not strain I have another ct scan next week so will let you know what they find
Hi guys, apologies for being quiet...I guess I somewhat gave up! I had the echo finally, and was advised that the results were normal... No other advice was given, was advised the pain could be muscular or anxiety. Personally I just don’t know anymore, the pain still comes on randomly I have good and bad days, but my overall strategy is to just do my best to ignore it and carry on with my day. After 8 weeks off and lots of sleeping and rest coupled with ibuprofen , I’m just trying to push myself to get back to normal. I figured there’s no point in going back and forth with doctors and wasting time in A&e, just to have no actual diagnosis,especially given the current climate. Shoulder ache has been intense! And I’ve noticed wearing mask causing pain when breathing even after...so anyway that’s where I’m up to...I’m sorry it’s not the most encouraging but hopefully I’m on the road to full recovery. I hope you are all well and safe, bless you all for being so supportive and informative. I’ve had more here than the doctors!
Hi barios how strange I also find my pain comes on when wearing a mask and I also had no definate diagnosis so I get where you are at had echo all normal having scan next week see how it goes
Hello there, if you are reading this I hope you are well and safe! I just thought I’d share a little update on how things are going on my end. Since the echo results came back clear, I tried my best to just carry on with getting back to “normal”. Reduced my ibuprofen intake gradually...somehow it feels as though when I take ibuprofen the chest pain is sharper compared to the dull ache it usually
Is. Anyway the chest pain itself has reduced, the pain when doing minimal tasks is no longer there “touch wood”, what I have found or have struggled with quite a lot is pain in my shoulder and neck, predominantly left side, this also moves up to my jaw left side leaving me feeling tingly up to my cheek! This is especially at night, not quite sure where that’s good or bad but I haven’t discussed it with the doctors. I guess I’m just trying to ignore and keep going, oh I’ve also noticed chest pain/ heart palpitations that hurt(feels like I can feel my heart beat, more exaggerated than usual, the movement but it hurts) I’m not the most clued up with this stuff so please excuse my descriptions. This also tends to stand out during my monthly’s... probably hormones I don’t know. Anyway just sharing in case someone reads this who has experienced the same and can give me any advice or share experiences. Hope you are all well and safe, and keeping sane, stay strong and God bless!
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Update to A year with Pericarditis - Pericarditis to Pericardiectomy 
