Pericarditis support

[Emfletch]

Hello

Has anyone had Pericarditis and if so could they explain their experience please. I’m suffering with this at the moment and am finding it extremely debilitating. Thank you

[Kiernan81]

Hi,

I’m a 36 year old female and I was first diagnosed with pericarditis in Oct 2017 at a&e after presenting with right sided chest pain especially in the rib area.

I was told to take paracetamol and ibuprofen and that it would go away within 2/3 weeks.

The pain and discomfort has continued, and I’ve now developed real anxiety as a result. I have had several more trips to a&e since October, due to pain and once because my heart rate was almost 160.

I now have a pericardial effusion (fluid around my heart) which they have said is a direct result of the pericarditis.

I have had every possible blood test to try and find a cause for the pericarditis to which every test has came back negative.

I’m otherwise fit and healthy with no other health complaints. They gave me a 28 day course of colchicine (which wasn’t successful, and I’m now on naproxen (which hasn’t made my symptoms any less)

I have been off work since February, and I don’t see the cardiologist again until June. Until then I’ve been told to manage the pain at home and that they have no idea as to how long my symptoms may last.

This condition has pretty much taken over my life and my gp said they don’t have the answers I am looking for, my concern is if I ignore the pain and wrongly assume it’s the pericardial effusion or pericarditis when it could be something more sinister, but in which case I find myself at a&e every few weeks. They are always willing to see me and run an ecg and chest X-ray and bloods, but the process itself is very distressing when you are suffering from real chest pain.

Regards

X

[Emfletch in reply to Kiernan81]

Thank you for answering my message and I’m so sorry that you are still in so much pain. My journey started in April of last year with Supra ventricular Tachycardia and Wolfe Parkinson White Syndrome. This basically meant that I was born with an extra electrical pathway in my heart which when decides to play up puts my heart in overdrive and beats to 207. I didn’t know I had it until last year. I’ve now had two catheter ablations ( they go through your groin and burn bits. Of muscle in your heart) The first one didn’t work but I had another op in March which was successful but left me with pericarditis . I have pain inbetween my shoulder blades and pain in my ribs on the left side( it feels like they are sticking together) I also get bad chest pain, which sometimes goes into my Jaw and down my arm. Like you I have been admitted to a &e and told to take colchicine ( which gives me an upset tummy) and co cocodamol which does nothing for the pain. I total understand your anxieties and the pain really is not nice to live with. I am also very short of breath. But like you have been told that it will go and to manage the pain. Not great advice and would like to know if the advice would be the same if the specialist had the same illness as we do. Can I ask if driving or any kind of exercise also agrrevates you and is yours worse at bedtime? If we can only support each other with moral support then that’s a bonus , so please feel free to chat anytime and let me know how you get on

Take care x

[Kiernan81 in reply to Emfletch]

So sorry to hear of your troubles.

I also get the pain between my shoulder blades, and on occasion my arm and jaw, which creates a great deal of anxiety as I then become convinced I must be having a heart attack. My pain is always mostly at my ribs, in both left and right sides, I do get some relief from lying on whichever side is sore with my arm stretched above my head and a cushion under my ribs. These pains can last from minutes to hours, and it’s almost like when I don’t have the pain that I’m sitting waiting for it to happen.

As for pain relief I was given 30/500 cocodomal which aren’t ideal as they make me very woozy. The naproxen offers no relief.

I do get very breathless on exertion and I have to sit down for a rest doing the simplest household chores. I’m not overweight (I’m just over 8st and I’m 5 ft 6 and also a non smoker) I also get light headed.

None of my symptoms seem to relate to the pericarditis description online, mine doesn’t get worse when I lie down and it’s not central to my chest, it’s always rib location. The pain however does seem to be more frequent at night, and this can pose a problem for sleeping. I’ve had tests to rule out auto immune diseases and all are negative.

My gp told me yesterday I may be left with this pain, which to me just isn’t an option, but I’m not being treated as a priority which is a double edged sword, as they obviously don’t think I’m at huge risk, but then again I feel like I’ve just been left to deal with it on my own, with no treatment plan in place.

Take care

[Darron_12777 in reply to Kiernan81]

Hi Kieran,

Read through all your comments and seem to be in the same boat as you.. can I ask how your getting on?

[Emfletch]

That’s not good and not what you want to hear from your G.P. We sound like we have mirror image symptoms. Last night I was sleeping in the position you said as I find it gives the most relief. When you get the pain in your jaw etc it is very scary and my anxiety also kicks in , which then gives me more chest pain. I must admit I’m very jealous of your weight, I haven’t been eight stone for years😂 and unfortunately had to have a lot of steriods last year so now resemble the ‘stay puff marshmallow man’ but hey ho. I am ringing up my Arrthymia nurse on Monday to ask for help again, so will pass on any advice they give me.

I think all that we can do is try to stay strong and enjoy what we can when we can and have a good moan when we need too and most of all keep our sense of humour 😊

Take care

Em 😊

[Mikamoo2]

Hi both

Sorry to hear you are suffering. I too have Pericarditis it started in January after having a cold. I am a little better physically now but nowhere near back to how I was & like you both my anxiety is at an all time high I still get short of breath & have chest & left arm pains when doing anything pyhsical but even sometimes when doing nothing! Sleeping is difficult cant seem to find a comfortable position. My gp just tells me it will get better & to push through the pain which is impossible it literally stops me in my tracks all I have been given is paracetamol it feels like Im making a drama out of somthing that the doctors think is not a big deal. I keep telling myself there are worse things to have but after only been a year into feeling better after having Myocarditis a few years ago I get very down some days. I am back at work part time now but struggling. Hope we all start feeling better soon x

[Darron_12777 in reply to Mikamoo2]

Hi there,

I had myocarditis 2 years ago and now been diagnosed with pericarditis, can you let me know how your getting on?

Thank you

[Mikamoo2 in reply to Darron_12777]

Hi I will be honest with you I have never really felt 100% well since though much better than I was up until last few months I have been having some strange near faint episodes & pain in my arm chest & jaw they have testing for what is causing it but as yet no diagnosis although my initial myocarditis has been mentioned along with other maybes? Anxiety is terrible at the moment. Sorry not great news but hopefully you will make full recovery as I'm told most people do x

[Darron_12777 in reply to Mikamoo2]

Hi Mikamoo.

Unfortunately as we are advised we most likely won’t be able to go 100% on most things we do in future but hoping we can reach some sort of level of settlement to relax our minds & improve sleep would be a good start, keep in touch x

[Kiernan81]

Hi,

To Emfletch & Mikamoo2, hope you are both well. Just looking to see if either of you have made any progress with regards to recovery ? I really hope you have.

Unfortunately I still have all the exact same symptoms, only difference being is my anxiety has peaked. It is the jaw, neck, arm pain that throws me, the chest pain I can just about manage but even then that’s a struggle, but when I get the other pains I worked myself into a panic that it’s a heart attack.

And I think do I sit at home ? Do I go to a&e ? It’s an exhausting daily struggle just trying to rationalise the pain.

This condition has became so debilitating and there seems no end in sight at the moment.

Take Care

Xx

[Emfletch in reply to Kiernan81]

Hi Kieran81

I’m so sorry to hear that you are still in so much pain. I have definitely made progress as in I can do more now . I am still not back to normal and have to live life at a slower pace, which is frustrating and impractical as I now need to find work. I find if I am tired or just try to up my pace in life I pay for it with symptoms becoming worse again. Yesterday I had really horrible chest pain which went into my back and Jaw and I totally agree that anxiety levels hit the roof. I was convinced that I was having a heart attack and it took me a while to rationalise that it was a flare up of pericarditis. I also have rib pain on the right side and it feels like my ribs and skin are sticking together. Is this similar to you? I have started to go to a meditation group once a week now two weeks in and that has helped me relax. colchicine only worked for me for a short time and the side effects out weighed taking them. I found the pain was managed better on Diclofenic , so that might be worth a try. I now don’t take any regular medication and take co codamol when the pain becomes bad. It is a totally debilitating condition and I feel that some professionals do not fully appreciate how you can suffer with this. We have to believe that it will go away but it is hard to keep hoping at times that you will wake up one day and it’s gone.

Keep strong my lovely it will go and you will get back to normality and keep going to your GP and pestering and if you haven’t already I would ask for a referral to a cardiologist. I know it can’t help with pain and frustration etc but just talking to someone can sometimes help so if we can support each other through here it’s always a bonus 😊

Take care xxx

[jcborden]

I have had a number of episodes of pericarditis over the past 10 years and up until two years ago they were put down to chest infections and cleared up fairly quickly with no lasting effects.

However, two years ago I had a bad episode (excessive chest pain, very high fevers, cold chills etc) and was admitted to hospital where they diagnosed pericarditis. I spent two weeks on very high antibiotics with no improvement, in fact getting worse, had a chest drain in for a while and was in a very bad way, then I was put on prednisolene which almost overnight turned things around. Three weeks in total and a further six weeks to full recovery.

For the past two years I have been trying various immune suppressants in order to reduce the steroid dose, but this is a long, slow and frustrating process. As soon as I drop the steroid too low I get an immediate flair up, but can usually catch it before it gets too bad, increase the steroids and manage it. This allows me to lead a very normal life, except for lots of tablets. Of course I need to get the steroids down, there are a number of longer term side effects I wish to avoid (weight gain, managed by sheer will power and LOTS of exercise, bone density loss, again hopefully managed by exercise and calcium supplements, diabetes - so far so good as no signs...).

You need to see your GP and get referred back to hospital, likely to rheumatology. There are a number of available treatments for the longer term, but steroids are a very good quick fix.

Best of luck to you.

[Kt62]

Hi,

After 8 months of bradychardia and a heart which did not respond to exercise leaving me constantly tired I have recently been diagnosed with pericarditis following a pacemaker procedure (1/2/19). As i have LSVC the procedure took over 3 hours instead of 1, and the leads were placed in the rather thin parts of the heart wall. I was discharged from hospital only to develop severe chest pain as well as right lung pain within 24 hrs to be admitted through A&E. Diagnosed with pleurisy of the right lung and pericarditis after an excruciating 18 hours i was prescribed both anti-biotics and colchicine. This eased the pain and i was discharged from hospital after two days. I never felt 100% well, though had good days and not so good days. My colchicine prescription finished after 2 weeks and within 5 days I had to go back to hospital through A&E again. This time my inflammation markers increased significantly over a period of two days resulting in me having an experience where my body shut down and I had "intense rigours" (witnessed by my daughter). This resulted in me being moved to the cardio ward (as previously my condition was not considered to warrant bed on cardio ward - despite pacing the ward in pain two nights). The cardio team were convinced i had an infection - and took bloods every day - to test for bacterial infection and/or develop bacterial culture - nothing found. I was prescribed colchicine 4 x per day (causing sever diarrhoea), which eased the pain and reduced my inflammatory markers. Discharged after 5 days I again knew i did not feel 100% well. Although i did not experience severe chest pain again I did have tiredness, lethargy, feeling cold and unable to maintain a good body temperature etc. I returned to the Cardio Day Clinic - unable to face another visit to A&E, where i was given blood tests, x-ray and ECG. X-ray was clear however blood tests showed an infection. Was prescribed anti-biotics, unfortunately had a reaction to the anti-biotics and ended up in hospital for anther 6 day stay (through a&E again). This time I came under the care of the medical/respiratory team, who eventually disputed that i had a chest infection and i was discharged. Inflammatory markers had been at 295 and reduced to 70 when discharged.

Since leaving hospital I had one appointment at pacing clinic - where pacemaker checked - and i have been signed off by the cardio team, with ongoing pacemaker checks but nothing else.

Within two days (20/3/18 - 7 weeks after the initial procedure and diagnosis) i was experiencing chest pains and breathlessness again - despite being on 2 x colchicine per day. I was anxious as colchicine prescription was due to end the following day. Fortunately I had a GP appointment and expressed my concerns to GP. Unfortunately the GP said that she could not prescribe any further colchicine without permission of cardio team. I was in tears at this point and felt totally abandoned and vulnerable, result of weeks of trauma and lack of any ongoing support from cardio team.

Long story short - GP gained permission to prescribe colchcine (and was told that the only way for me to access cardio team was through A&E if experienced pain) - 1 per day. I increased dose to 3 x per day - as pain too great for 1 x per day. Returned to GP for another prescription, which I was given and have since had to design my own programme for taking the colchicine.

I have e-mailed the cardio team through the arrhythmia nurses - asking for information and support and received nothing useful. I asked a number of specific questions and received no answers. All I received was and explanation of my "unusual anatomy", a brief description of pericarditis and an assumption that one of the pacemaker leads is causing the irritation (although in all of the CT scans, x-rays and pacemaker diagnostics there is no evidence of this) and the offer to have the pacemaker procedure done again. As you can imagine i am not keen on having the procedure done again - particularly as there is no evidence that the leads are causing the irritation.

Since 20th March i have experienced what i would refer to as ongoing low level pericarditis symptoms with flare ups ;lasting 3-4 days every 7-10 days. I have returned to work - phased return at the moment - and am trying to return to exercise as I am really missing my running (I have a frozen shoulder so unable to ride my bike at the moment) having not been able to run properly for almost a year now! However when i run i can definitely feel irritation in my chest, breathlessness and wheezing (i have never experienced this before being diagnosed with pericarditis). My cardio team said it was ok for me to exercise, though i am now reading about pericarditis and seeing that other people are recommended to rest. I have days where i feel really tired and need an afternoon nap. I am really really really fed up at the lack of support and information. Can anyone help me with where i can find any information or support.

Should i exercise. Should i not exercise. Is starting with Couch to 5k a good idea? (I currently walk about 12,000 - 20,000 steps per day - though any hills, stairs etc leave me feeling breathless, wheezing) AAAAAAAARRRRRRRGGGGGGGHHHHHH.

I am even prepared to consult privately if i can get some answers.

Thanks for any support you can offer.

[CollegeDoctor]

Hi guys, I'm really amazed to find this forum. Reading all of the accounts on here is like hearing my own story read back to me. I guess the fact that I'm on here means I must have searched and been looking for others who are afflicted with this horrid disease/condition/ailment/weight. It's horrible, having found others who have been struct down by pericarditis is weirdly comforting to know I'm not alone. Here is my story, it is a long one so I'll put it in bullet points

Background

- Young athletic fit 29-year-old, muscular and gym freak

- And I'm also a GP

- for years from the age of 24, I'd always had twinges of what I had identified as pericarditis. Classic symptoms, was so bad when I used to lay flat

- 2016 March - I developed another twinge, however, thought best to push through and continue exercising

- 2016 April - After one month of fevers >38, shivers and intense pounding pain between my shoulder blades as though someone was standing behind me and punching me I went to the GP

-Transferred that same day to the CCU coronary care unit

with 1) Pericardial Effusion 2) Left Pleural Effusion 3) CRP 450

4) HB 9 5) Right Atrial Enlargement

I thought I was going to die...

-Stepped down to the cardiac unit after 5 days, had every test under the sun given abx, fluids, daily echos

- After 3 weeks in the hospital, transferred to a cardiothoracic centre had a pericardial window made in my pericardium and pleural drain and pericardial drain put in.

-They tested the pericardial fluid and it showed nothing.

- Discharged after 4 days. Diagnosis:..........probably viral !!

After 1 month in the hospital ....probably viral.

Over the next coming years, I had flares on and off. No rhyme, reason or pattern. I could exercise hard, doing hiit for months and no pain, then I might be on holiday and then out of the blue, I feel a tap between my shoulder blades that evolves into the same punching pain. Radiating up my neck and stabbing me in the left side of the chest. I used colchicine for a while but stopped, due to concerns that it can reduce male fertility. I had follow up echos and ECGs but there is nothing anyone can do. Luckily I was free for almost a year. I gave thanks in Church and it appeared soon after.... part of me thinks maybe it is some sort of spiritual attack. Now as soon as I get the pain I take 600mg ibuprofen three times daily (all within allowable limits), and I rest. I blitz it before it gets a chance to grab hold. They say pericarditis just burns itself out..... I guess I'm still waiting.

[CollegeDoctor]

For pain wise, i have tried diclofenac 50mg tds which was a god send, when I first started having flares. Diclofenac is not the safest of drugs however, there has been warnings linking it to stroke. I stopped using it due to all of this.

Good old trusty naproxen, 500mg bd

Colchicine which I stopped using after 6 months, I think it did help to suppress things.

Now I take ibuprofen 600mg three times daily with 20mg omeprazole once daily.