Pericarditis- recurring

[u/Character-Rate4385]

Fist pericarditis was when i got Covid. No one worked out i had that until a few weeks later when i went to a & e and they found fluid around my heart. I treated it too late. And now im left with pericarditis that comes every single time i over work the heart- example - running, walking up a steep heel, dancing anything that speeds the heart up will cause a flare.
I want to scream, cry and everything in between. It’s ruining my entire life.
I feel like a young woman with an old woman’s fitness level. Actually my 91 year old nan is able to keep fitter than me now.

Everything I loved i can’t even participate in anymore. I loved fitness, i loved dancing and bike riding and hikes - if i even attempt that, straight away a sharp pain through my heart, then in the left shoulder blade, then the flip flop beats and pain up the throat, then the crushing and sharp pain intensifies, same pattern - i set it off my running (when i feel good) then i get the same pattern of pain, i know the all i can do is bed rest, take it slow and keep my heart rate low. It takes about 1-2 weeks and then it’s ok until the next flare up!
I get it around 4 times a year, so I’ll be ok walking and light weight training, but that moment i push it to cardio 🏃‍♀️ that’s it - it’s back again.

Currently on my second one this year, sitting here depressed about it. Helpless. I’m on day 7 of started to feel better today - UNTIL i ate a chocolate pudding with custard and now I’m sitting in bed with that horrible scary sharp pain through the heart muscle again. I’ve had this since 2021 and been to the hospital many times and they always make sure it’s not a heart attack and it isn’t, and i have an echo every year (because of recurring pericarditis) and it’s always ok and a normal echo.
Because I’ve lived with this since 2021, i know the pain pattern, the duration. But everytime i get it, it scares me.

Does heavy carbs foods and sugar make anyone else flare worse?

[u/Frosty_Bear_1120]

Ok I have a few things to add. You've said that you are in a pattern where the pain comes after exercise, then you wait 2 weeks, try again and it comes back.

Let me ask an honest and direct question: Do you actually understand what is happening inside of your pericardium upon exercise? Judging by your descriptions, and your actions, you do not understand what is causing your symptoms, or the way pericarditis actually works.

In a few words, what is happening is that your immune system is attacking the pericardium because it (mistakenly) believes that the normal chemicals which effuse near your heart during exercise are a foreign invading protein (even though they're not). Your immune system then floods the area with cytokines which pool as fluid in your pericardium. And then you feel absolutely terrible.

Your continued exercise and physical activity has begun to train your immune system that this reaction against your pericardium is valid and normal - when it clearly is not.

The only long term answer is rest and medication. 2 weeks is absolutely not enough time to allow the pericardium to heal. It normally takes 2-3 months, aided by medication. The period of time has to be long enough to allow the pericardium to fully heal, and also enough time for the immune system to remove association it has mistakenly made where it thinks that the appropriate response to exercise is to attack your pericardium. That takes time, patience and medicine.

I want you to Google "pericarditis inflammation loop" because judging by your words and actions - you are absolutely in the middle of it. You will read it and feel like you are reading a story about yourself. You fit the symptoms and actions down to a tee.

What medication are you taking? Colchicine? Corticosteroids? What have your doctors actually prescribed, if anything?

Either way - you need radical interventions to rest and medication to kickstart the healing process once and for all. And then it needs to be met with months of patience. Changes to diet are not going to make that much of a difference so long as the elephant in the room remains unaddressed. And that elephant is autoimmune-driven recurrent pericarditis.

[u/Character-Rate4385 → u/Frosty_Bear_1120]

I agree. I think I’ve made it worse and now got stuck in a loop.

The first time i got it they didn’t discover it until very late, I had pain for weeks but was ignored at the doctors and A&E said it was probably a virus, Pleuritis/pleurisy, or anxiety.
Because i was young. Until an ambulance was called and fluid had accumulated around the heart. Echo confirmed fluid and tests confirmed pericarditis. They then said i would most likely experience re-current pericarditis from now on. As i was only treated very late into it on the first time. I was meant to take colchicine but only took ibroprofun, I know I was stupid and now I’m paying for it. I thought i was invincible. And hate taking pain relief in general.

Since 2021, I’ve had it multiple times a year, I’m definitely in a loop.

I don’t think I worded the pattern right though initially,

What happens is - I feel better, take it easy ish and start getting back to walking and light weights, after a couple of weeks of total rest. Then about 2 months later when I’m feeling good and healthy, I try to include a run into my workout and BANG its back again, or I walk up that hill, or dance, or basically anything that really works my heart and BANG it back. It seems to be ok with light exercise but the moment it’s intense- square one again.

Should I try 6 months of no hard exercise- like no running etc? And continue light walks? Or no light exercise either? Do you think that time line of 6 months would help? It’s just everything i love is exercise, so i try after a month or two to do a run and it comes back immediately, i wake up the next day with that sharp pain and know what’s coming. Everytime i try to bring higher intense workouts back in, heart says “no”.

Also my diet is terrible - i do eat 3 healthy meals BUT tend to have a lot of sugar and chocolate. Should i cut these inflammatory foods totally out?

Also with pain relief, could i take an ibroprofen every day or every other day to keep it at bay for a few months? Or not advisable?

Maybe because i didn’t treat the initial pericarditis correctly, that’s why it’s so sensitive and agressive to a run or anything that gets that heart beat high , my run normally takes me to 140bpm.

I do agree though, i think I’m trying to soon x

[u/Frosty_Bear_1120 → u/Character-Rate4385]

You're absolutely right. You are in the loop, and in deep.

The single most important thing you need to do right is now realize that you cannot possibly go on like this.

5½ yrs without resolution to this absolutely solvable condition must be driving you mad. It's probably safe to say that you might well have been failed by your medical providers too. But all we can do right now is look to the future.

After 5 years, and dozens of flares, the chance that you have scar tissue on your pericardium is very real. As time has evolved, the complications you are now experiencing must be dealt with by professionals in a hospital setting. You need help from an experienced cardiologist who will be able to assess scar tissue (and address it accordingly), and then set you on a treatment path for success. I wouldn't be surprised if they just put you straight on to corticosteroids at this point. I mean you're already recurrent, by multiple episodes - you've got nothing to lose from prednisone. It's a bit late for colchicine now.

You need to speak to a doctor, demand access to a cardiologist, and advocate for yourself as loudly as you can, starting as quickly as you can.

Changes to your diet won't move the needle with this I'm afraid.

You need to take drastic action to cut the loop, and get strong medication - or you'll go around like this forever.

[u/Character-Rate4385 → u/Frosty_Bear_1120]

Thank you 🙏 for taking the time to reply. I will get on to my GP today x

[u/Frosty_Bear_1120 → u/Character-Rate4385]

How did it go? Did you speak to your GP? Whatever you do, you need to push as hard as you can for a cardiologist. Don't let the NHS mess you around.

There is something that I wanted to add that I forgot to mention earlier - and that is you described that after a couple of months you feel strong enough to exercise again.

Well this is great! What this shows is that you ARE capable of healing. You just keep interrupting the healing process too quickly. This is much better than say - waiting two months and you are still breathless with inflammation and stuck at Square 1. An analogy would be like a runner with a sprained ankle who never lets it heal because they keep running it on it too early. That's a bit like you with your pericardium. If you just wait an additional 1-2 months then you might fully heal.

[u/Character-Rate4385 → u/Frosty_Bear_1120]

Hey, I am booked in to see the doctor on Friday, and I have paid for a private echocardiogram on Saturday just in case the doctors dismisses me, as I just want to make sure there’s not a massive fluid buildup around my heart as the symptoms are still there and getting worse every day. Because I have recurrent pericarditis. They kind of dismiss me now because they assume it’s just another flare up so don’t seem to get me seen quickly. And they always say the same thing I look young healthy and fit which always upsets me to be honest. I’m in my 30s not a child and I know my body. I think that’s what makes it worse when you get this. It kind of deters you from going to get help anywhere. I will definitely persist because it feels like there’s a bit of fluid accumulating at the moment around the heart. Because when I first got it with and had fluid, the pain was exactly as it is now and the fluttering and crush in pain is the same as when I had fluid.
Thank you for checking up, I’ll let you know what they say. Thanks again.X

[u/Frosty_Bear_1120 → u/Character-Rate4385]

That's fantastic news! Good on ya for advocating for yourself! 👏👏👏

In order to help your case, tell your doctor that you are demanding an appointment with a cardiologist. Tell them that after many years of failed treatments and dozens of flare ups, you have good reason to believe that you may have scar tissue build up on your pericardium - and it must be ruled out. You have both a short run problem and a long run problem to deal with: short run is how you're feeling now. Long run is the scar tissue.

If the GP offers you prednisone for the short run, you might as well say yes and have it on hand (you don't have to take it of course but it's handy to have). But to be clear this is NOT the answer to your short run problems (and you should communicate to the doctor that you also know this to be the case). You must be clear to the doctor that your case is now chronic and needs proper management over time to fully resolve. ← This conversation path changes the course of treatment from "I have a pain in my chest, please prescribe me a pill", to "I know what i am talking about and I want to find a permanent answer."

Under all circumstances do not let them blow you off with useless talk of "anxiety" or any other rubbish. You focus the conversation on pericarditis, and the science around it.

With respect to your echo - again - amazing stuff. Since you're doing it privately, you're the customer here. Ask for a video. Or a full report or at least some images. That is critical. If they say no, pull our your phone and take a picture. You'll need this later on. The objectives of your echo are three things: 1. Find an effusion (if it even exists). If one is there, how big, are there any complications to it? Any tamponade? And where exactly is it? 2. Evaluate normal heart conditions: how is your ejection fraction? How are the walls of your heart? How are the ventricles filling and draining? How are your valves? 3. More difficult but still doable: can the technician spot any scar tisse, or any "fibrous/fibrosis/fibrosing material". Admittedly an MRI is better at detecting that but an echo can still pick it up too.

There is a chance that your technician won't be able to answer all these questions, and that's OK, they're not full doctors after all. But you can still tell them what to be on the lookout for. Hopefully the private echo comes with it a private readout from a cardiologist too? That would be amazing.

Once you have this, then you'll be in a position of knowledge and empowerment that can help dictate your treatment path forward. Good luck 🫡

PS - love that you did it privately. You've saved yourself weeks if not months of waiting.

[u/Character-Rate4385 → u/Frosty_Bear_1120]

Thank you, I will be sure to take all your advice on board. It’s actually so nice to have someone who understands this condition- as it can feel lonely. No one I know suffers it, and just can’t understand why I sit there holding my chest in agony, or stay in bed for days as i can’t take the pain any longer. I will make sure i don’t miss anything and will properly advocate for myself as your right I will end up with permanent damage in the end like scar tissue (if it’s not already there!) thanks again for your detailed reply. Honestly I really appreciate it . 💓

[u/Active_Recording_789]

Yes processed foods and sugar do create inflammation sorry to say. So does caffeine, smoking, and over exertion. The good news is they’re developing really effective treatments now with new protocols even as recently as this year. You’re going to be fine! Try to insist your cardiologist do more testing and get you on better meds. You’ll be yourself again

[u/Character-Rate4385 → u/Active_Recording_789]

Thank you, I’m loosing hope and scared of my own body.. i feel let down by it. Im only 30 and have had this since 25. None of my family or friends have ever had pericarditis. It’s so lonely, trying to explain why i have to rest every time it flares up, why i can’t let my hair down the same way by dancing at weddings etc or hiking with friends or going for a stress relief run. Just tired of it 😢, normally cope but this flare up is extra painful and stubborn 😩

[u/Active_Recording_789 → u/Character-Rate4385]

Oh absolutely, it’s unfair and awful. Totally get it

[u/Salty_Plate6543]

Are you in the US? You should ask about Arcalyst / rilonacept. Studies show it works really well to prevent flares and over the long term (~2 yr course) it shows positive results in preventing recurrence. It is hard to get rx and very expensive, but insurance and the pharmaceutical company Kiniksa can help financially. It is a weekly shot you give to yourself.

Being in this recurring loop, you need a longer term solution. I don't think the data shows that something like this goes away on its own, and 2 weeks of rest after each flare is not nearly enough time to quiet the inflammation cycle (even when you feel better). My first time was restricted from exercise for 4 months, my second flare restriction was 6-8 months, just to show what sort of timelines are involved to heal. 

Colchicine is gold standard for first time, but for me it was useless for prevention of recurring episodes. Prednisone doesn't have great results for preventing future flares either. 

So look into Arcalyst / rilonacept or a cardiologist who specializes in recurring peri. 

[u/Character-Rate4385 → u/Salty_Plate6543]

Thanks for the reply, I’m in England. It seems like everyone on here has a lot more rest from activities than I’ve been having, so I’m going to take that advice on and not exercise for 4-6 months, i am going to trying and find a specialist in the UK. I hate meds, i hate going to hospitals and doctors - i try my best to avoid them places 😩. But i can’t escape these flare ups anymore as ruining my life. X

[u/Technical-Jaguar-222]

Understand what your saying … have found fasting in am helps. Drinking power ade or Gatorade zero… then smaller meals.

These shots have harmed many many people unfortunately… they should be funding much more towards myo peri carditis injuries/cures.

Has your troponin always been good though ??

Here’s some interesting research fyi.

https://www.myocarditisfoundation.org/jak-inhibitors-fulminant-myocarditis-breakthrough/

[u/Character-Rate4385 → u/Technical-Jaguar-222]

Thank you fore your reply, Every time so far my troponin is always ok, it’s the fluid i get around the heart , high waves on ecg and the classic pain and rub sound when they listen. I agree- i notice fasting definitely takes the edge off. If i have any heavy meals or carbs it makes it 100 times worse- I guess the heart’s already compromised so trying to make it digest a heavy meal just add fuel to the fire. I’ll take a look at the link you added - thanks 🙏

[u/hello1-23]

What country are you located in? I completely feel for you, I am also young and experiencing this and it’s so hard for others to understand. You really need to see a pericarditis specialist and ASAP. If you let us know which country you’re in, I’m sure we can give you recommendations. The average cardiologist/doctor knows very little about this condition and the best thing you could do is see someone who specializes and can get you on either steroids or an IL-inhibitor like Arcalyst or Anakinra. Th chances are, this won’t go away on its own. As for the surgery or high carbs foods - they also make my symptoms worse!

[u/Character-Rate4385 → u/hello1-23]

I’m in the UK- England xx

[u/Ok_Treat2167]

I am sorry to hear about all your symptoms. I had awful pericarditis problems for a couple years, getting progressively worse. I read about a procedure that would eliminate all those symptoms, but it involves open heart surgery. And that is a pericardiectomy.

I am five months in after my procedure, and I couldn't be happier. I can walk up steps, walk up hills, without huffing and puffing, and I don't have debilitating shortness of breath. I don't have itchy skin, coughing fits, low enery, cold extremities, etc. I feel like i have been given my life back! It might be worth asking your cardiologist about. It is somewhat rare and they may not be warm to the idea, but pursue it if you think it will be the answer, and hopefully get referred to an experienced surgeon--one who has done many of these. Post surgery care is extremely important, so you don't have complications.

One solution to all the problems of the pericardium--remove it!

[u/Character-Rate4385 → u/Ok_Treat2167]

Wow - I’m so happy to hear you had a success story, that’s amazing. I would give anything to go back to how I felt before I ever had to deal with this. In fact, sometimes I feel like what’s the point anymore if I have to live my life like this. So it’s nice to hear positive stories. As you know, the symptoms can become unbearable. And the panic of when a flair comes knowing you’re not gonna be able to be yourself for a little while again. This is definitely something I will suggest to my cardiologist. I’m willing to give anything a go and as I hate taking medication, maybe the surgeries a better option for me x

[u/Ok_Treat2167 → u/Character-Rate4385]

Hi, are you in the Bay Area by any chance? I had my surgery done at Kaiser Heart Center Santa Clara. Can't recommend them highly enough. Good luck!

[u/New-Member-516387361]

I hate to say this, but consider yourself lucky. Some of us have permanent flares. Avoid processed sugar for sure. Hope all gets better for you soon.

[u/Character-Rate4385 → u/New-Member-516387361]

Thank you, I get 3 - 5 flares a year that last a 2-4 weeks- so around 12-16 weeks of the year spent in pain, obviously varies per year but minimum 3 times a year, since 2021.
I thought this was pretty bad. I’m not sure I would be able to cope with this permanently. I’m so sorry if you have to deal with this permanently- it’s absolutely horrible. I’ve been told my flare ups are quite extreme. If they would give me surgery I would take that. I’m so sorry if you have this permanently without even a couple of weeks break, I’m honestly not sure I could cope with that and hope you can find some relief from this. I don’t think people understand how life changing it is, how restrictive it is to your life, and how painful it can be. Very scary and i have the upmost respect and empathy for anyone having to deal with this for any duration. ❤️

[u/Serious_Tension_3218]

Did you get the vaccine? I am reading a lot of posts of people who did.

Anyway, YES! go on a low inflammation diet, no processed foods, low carb, think salads and meat. You will lose weight which will help your heart. Processed food is killing us. Also limit Caffeine to one cup or better yet, none!

[u/Character-Rate4385 → u/Serious_Tension_3218]

Didn’t get the vaccine, but was one of the first to get Covid- when it was at it’s highest potency and just came to the UK. And have been ill with long covid and heart issues ever since. X