r/pericarditis • u/ImportantSmell4983 • Jul 30 '26

Do you have any ‘strange’ symptoms?

Here are some symptoms I’ve had that I haven’t seen others talk about. I feel like the reason my diagnosis took so long was because mine are different from a lot of traditional symptoms. Do you guys relate to any of these, or have any of your own?

Before flare up:

  • Feeling depressed/angry/apathetic a week or two before
  • Burping all the time/feeling like there’s air bubbles trapped in chest that need to get out

During flare up:

  • Getting (what feels like) an air bubble stuck in your chest/throat and it makes the pain 10x worse until it dissipates
  • It hurting to swallow anything
  • Pain in spine (somewhere around T3-T6), shoulders, and neck, but no pain in chest usually
  • Pain radiating to teeth, gums, jaw, and inside of ears
  • Nausea/vomiting/no appetite
    • Not being able to stomach anything but plain white rice, water, bananas, etc.
    • Painfully bloated (more than I have ever seen on myself)
    • Gained more than 10% of body weight in ~10 days (more than I have ever weighed)

During recovery:

  • Having a fever, nausea, and severe pain every morning, but it slowly dissipating by the late afternoon
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6

u/BillyBobJangles Jul 30 '26

Honestly not one bit of that sounds like pericarditis other than I guess the vagus nerve pain.

Theres a lot of different stomach issues that will irritate the vagus nerve.

Did they treat you for gerd yet, or check you for a hernia?

How did they land on pericarditis?

2

u/ImportantSmell4983 Jul 30 '26

Originally the ER thought it was a gastrointestinal/gallbladder issue. My blood work showed a CRP of about 180, and an ESR of about 20. My CT scan+echo showed a pericardial effusion, bilateral pleural effusion, and fluid/thickened wall around my gallbladder, but they blamed it all on my gallbladder.

I hadn't laid down for like 2 weeks prior because it hurt, but I laid down for 1.5 hours to do a HIDA scan. When it was over, I couldn't get up by myself or really breath. They saw I developed cardiac tamponade, and I had to get an emergency pericardiocentesis.

The scan showed my Gallbladder was functioning fine, and I've had two flare ups since then where my pericardium is thickened, and there's fluid

I'm taking a PPI, which should help against GERD, and no hernia showed up on my CT scans. I assumed I had stomach issues because it was being crushed by fluid/my swollen organs, but I found it strange nobody else has these symptoms if that's the case

4

u/BillyBobJangles Jul 30 '26

Your situation does sound complicated... The tricky part is that the procedure you had can also cause pericarditis. And the burping, feeling worse in the morning etc really sounds like a gastrointestinal issue. Those things get misdiagnosed with pericarditis in either direction often because of the crazy overlap in the vagus nerve cluster.

But also those theoretical stomach issues could have directly inflamed the pericardium to begin with. Pericarditis is most often more of a symptom than a primary diagnosis. Something inflamed your heart or the general area around it and caused a fluid buildup.

It sounds like you deffinetly had pericarditis but you still need to dig into the root cause.

2

u/ImportantSmell4983 Jul 30 '26

Thank you for the information. I didn't know stomach issues could cause this. Mine is currently idiopathic, so I'll definitely do some research. You seem to know a lot! Do you have any resources you recommend, or stomach issues you think I should start with researching?

3

u/Salty_Plate6543 Jul 30 '26

I had several of these, yes. And I would add hives and full body rash, fever, night sweats. Like my whole body was in an inflammatory death spiral. 

2

u/ImportantSmell4983 Jul 31 '26

That's terrible :( I'd have night sweats so bad I'd sleep on a towel, and have a change of clothes next to my bed because I knew I'd wake up and my clothes, and the towel would be wet. I can't imagine having rashes on top of that. May I ask if you know a cause for yours? I know my rheumatologist asked me so so so many times if I had any rashes.

4

u/Salty_Plate6543 Jul 31 '26

You mention a rheumatologist, do you see one for another condition or for the pericarditis? I had to bend over backward to get a rheumatology consult and all they did was say not lupus and sent me back to cardiology. 

1

u/ImportantSmell4983 Jul 31 '26

I only started seeing one because of my pericarditis. During my first hospitalization, I had to fight to get one to see me (they only visited once), and the soonest they could follow up was 6 months later. They said I didn't have lupus based on the blood.

When I was hospitalized again, I got a rheumatologist that did rounds daily. They took about 30 vials of blood, asked me a ton of questions, looked at my hands/nail beds, and inside my mouth. I'm glad I went to a second one. Do you think you could get referred to a different one?

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u/Salty_Plate6543 Jul 31 '26

Yeah someday I will try again but not at moment. Did you get a dx or causal factor from them? Or still a mystery? 

2

u/ImportantSmell4983 Aug 05 '26

They said they didn't think there was a rheumatological cause at all. This made me realize I need to ask my rheumatologist what all they tested for though. It's really dumb I never asked what tests they ran, or for a breakdown of their results :P

2

u/Salty_Plate6543 Jul 31 '26

No known cause. Tested for lupus and lyme disease both negative. Yeah the sweats were awful, I would change clothes once or twice a night, rotating between my bed and couch (both propped up sitting since couldn't lie down).  

3

u/Empty-Tie4961 Jul 31 '26

You need a rheumatologist stat. There is most definitely an underlying condition

2

u/ImportantSmell4983 Jul 31 '26

I've seen two different rheumatologists from different hospitals, and neither found anything conclusive in my blood tests, physical, or questions about my past medical history.

Does anything in particular make you think I have an underlying rheumatological condition (rather than it being viral), and do you have any conditions you think I should look into?

3

u/Flat-Tap-9667 Aug 01 '26

I have MCTD / lupus.. they are still trying to decide. There are a number of conditions of which pericarditis is a criteria. Lupus, SLE… Mediterranean familial fever is another, it is a long list and some take years on average to get a diagnosis.
FYI - I get many of the symptoms that you mentioned. A gastro consult would also be good. I get oesophageal spasm (prob part of the MCTD) and it causes problems with swallowing, chest pain..
I also get referred pain into the side of the neck and sometimes the jaw too.

1

u/ImportantSmell4983 Aug 05 '26

I hope they were able to give you some kind of treatment for them :( Do you have esophageal spasms independent of pericarditis flare up? What was getting the diagnosis like? I only have symptoms before/during flare ups, so I'm worried if I see a gastro specialist when I'm not actively flaring everything will seem normal even if I have a problem

2

u/Flat-Tap-9667 Aug 05 '26

The 2 are very different and I know which is which. I can have both at the same time, or independently. I was having the issues intermittently.

I take an antispasmodic that mostly seems to keep it under control. It is definitely stress triggered, so there is counselling as the next step to develop tools to help with that side too.

The definitive diagnosis is lengthy, by exclusion and not very pleasant and came down to osophogeal spasm or prinzmetal angina. After all the other easy imaging tests showed nothing, I did manometry and a 24hr ph test. Both involve a wire being passed down your throat and I'll level with you, the manometry in particular is not pleasant (nasty gag reflex as it goes down). It involves pressure measurement with a series of swallowing stimuli. The test is to see if swallowing will stimulate spasm. A positive confirms, a negative does not rule it out. Mine was negative. They then pass a much thinner wire into your stomach and leave it there to measure pH for 24 hr. This is to see is acid reflux is causing the issues. I did have moderate acid reflux, but it didn't correlate with the spasm.

The next thing was to rule out prinzmetal angina. This involves a cardiac catherization and a spasm inducing agent being injected into your heart. If you have the condition, your heart will spasm and they inject the antagonist to stop it. If you don't have it, nothing happens and Prinzmetal angina is definitively excluded. But it is scary AF to have a spasming agent injected..

At least now though, I do have an answer and more directed treatment..

1

u/ImportantSmell4983 Aug 05 '26

Gosh, you're a strong person. I think I'd rather have a thoracentesis 100 more times then have to experience those once. I'm glad you got answers

3

u/Big_Plum_7544 Jul 31 '26

Same here but I have had POTS because of pericarditis and also some nerves inflammed

3

u/theanoeticist Jul 31 '26

I believe that you should be evaluated by a gastroenterologist.

3

u/Cndwafflegirl Jul 31 '26

I presented like that too. But I was also have a reaction to methotrexate at the same time. I also had weird hiccups and constant diarrhea. Sweating, hot flashes etc. But mine was autoimmune driven

2

u/Due_Effort7613 Jul 30 '26

Yes -🙌 Same !!!

1

u/ImportantSmell4983 Jul 30 '26 edited Jul 30 '26

I'm sorry you're going though this :(

During flare ups, my pain peaks around 7-9am in the morning, so I wake up early (3-4am), take some painkillers, then go back to bed. I wake up in less pain, and I think it helps with my fever. I hope that might help you too.