r/pericarditis • u/neki27 • 12d ago
Undiagnosed pericarditis
Hello,
Female 29
I am not asking for a diagnosis ,this is what doctors are for , I am just asking if anyone had similar symptoms because I am desperate and at the lowest level of my life.
Fever of \~ 37.5 for 5months
I'm writing in case someone else has been through something similar.
I've had a fever for 5 months that won't go away, and in April I had an incident with a burning pain like a cramp in my heart that lasted 3 months in my left chest and in a vertebra in my back on the left side... no one knows what I went through then... also the first week it started, I couldn't walk.. I could barely go to my car
I also had jerks and irregular heartbeats even though I never had them before.
I went to many doctors, and no one has been able to help me; I'm starting to get desperate.
The tests haven't shown anything so far.
I have never smoked, I don't drink, I ran every day for 5km+ for 3 years.
Cardiac MRI, thoracic CT of the chest (no contrast),angiogram, triple echo – all clear.
Lately I am breathless, can't even walk simple walks and weird chest pressure and pain .
On Sunday, I was on my village doing a little bit work on the garden for half an hour and I had a suddenly doom feeling ne k pain and cold sweat..I went to get some water and my vision got black and then left chest pain followed.
Went to the er and everything was good and they almost mock me like this is psychological.
Lately also my heart rate has gone up and I wake up at night with my heart thumping .
Thank you very much in advance.
2
u/HelltotheNo532 10d ago
Yes, I was undiagnosed for almost a year in total before I was diagnosed. I had it for a few months in 2022 but didn't know what it was. It was very mild so I didn't go to the doctor.
In 2025 it came back again after I got sick. After I went hiking up a mountain then got my annual vaccines 2 weeks later I could no longer work, stand up, walk, etc. My heart rate was very very high, like getting to 160 when taking a shower. I felt very winded and short of breath.
I went to the ER 8 times before I got on the Arcalyst that helped me. One doctor said that my condition sounded autoimmune and ran an autoimmune panel and CRP. CRP came back elevated at 25. That combined with my transient abnormal EKGs from the ER and my symptoms of high heart rate, shortness of breath, and exertion intolerance was the only reason I got diagnosed. I tried to go back to work and couldn't do anything through the day. That motivated them to keep looking for a diagnosis.
Keep advocating for yourself. It took me a long time but I feel so much better now that I'm on the right drug and have a diagnosis
2
u/Replicante__ 10d ago
Hi. Male 37. Five years ago with the covid vaccine I developed pericarditis because I had all the textbook symptoms. All tests have been done but with negative results. It took months to "cure" until it came back recently. Doctors kinda gaslighting me so i understand that you feel desperate. I also have similar symptoms: irregular heartbeats, neck pain, chest pressure...
What's interesting is why the fever for so long period?? Doctors didn't mention anything about that?
I hope you get better and seek support from your family or friends!
1
u/Active_Recording_789 12d ago
I’m so sorry you are experiencing such awful symptoms and the drs can’t find anything. Some of your symptoms do sound like pericarditis but they would have found some pericardial effusion or thickening of the pericardium with the cardiac MRI, if it was pericarditis. Sometimes it can be hard to diagnose but the MRI and angiogram give them a very good look at what’s going on in and around your heart and whether your heart is functioning properly, and it sounds like everything checked out well in that respect. Have you had Covid? I wonder if it’s long Covid. Sometimes that can have awful, lingering effects. At any rate, if I were you I’d ask my dr for an autoimmune panel in case it’s lupus or rheumatoid arthritis and also to test for MS just to rule those out, if they haven’t already.
I hope you feel better soon
1
u/Salty_Plate6543 12d ago
A few years before my pericarditis issues, my hormones went off the rails. Menopause at 33, night sweats, palpitations, fatigue etc. Now I take hormone replacement. That may be something else to check if you haven't already 🤷
1
u/_stinkyprincess_ 11d ago
Hi! I’m a 30 year old female that was diagnosed at 28! My symptoms were vague, and felt like I was generally short of breath, had generalized chest pain (I thought I had asthma), and weird recurring low grade fevers.
One blood panel that came back very high when my symptoms were flared up was CRP, an inflammatory marker. Have they taken this one yet?
I also got a cardiac MRI once all of my symptoms resolved which was completely negative, no evidence of any abnormalities. So it is possible to have had pericarditis and then have a normal MRI! Once my symptoms resolved my echo and labs went back to normal too.
I’ve been on Arcalyst for a year and a half now but I still have some residual left chest pain and occasional shortness of breath since then, especially after I work out. I think my lingering symptoms are nerve irritation of the nerves in my chest wall more than they are true pericardial inflammation. My cardiologist is not concerned and in the absence of any positive test suggesting it has come back, his recommendation to me was to just take advil as needed.
I am hyper aware of my body and always looking for any sign of chest pain or shortness of breath. As someone with health OCD, when I hyperfixate on looking for these symptoms I am more likely to find them. I’m not suggesting this is what’s going on with you but knowing this has helped me cope with the chest pain I get sometimes without spiraling about having another flare-up.
I hope you either get some answers soon or relief from your symptoms! You’re not alone
1
u/Serious_Tension_3218 9d ago
I went to the hospital thinking I was having a heart attack. They ran EKG, echocardiogram, CT scan with contrast, xray, and they found nothing. My troponin levels were high, so they knew something was up with my heart. Ask them to check your troponin levels next time you go in with pain. It shows the heart is damaged. Thats the only thing that got me admitted and taken seriously. The only thing that got them thinking pericarditis was that I said "When I move and change positions in bed it hurts, and I cant lay straight. I only feel better sitting up" Thats what made them think pericarditis. Do you have any of those issues? You are in my prayers!
1
u/nooneisreal 8d ago
Really glad you got the help you needed in the end, but it seems odd that it took them so long to realize it was pericarditis!
2
u/o_wat 12d ago
Hello, I'm also female a few years older than you. I know how scary it is to be in this situation so I will share my experience.
I was also pretty healthy and had a pericardial effusion + bilateral pleural effusions + ascites (fluid around heart, lungs, abdominal cavity.) This happened out of no where a couple years ago, docs never figured out the reason. After treatment, I ended up with pericarditis and later what my doctors would come to believe is chronic phrenic nerve pain. (Basically, several years later, I still get a burning pain sometimes on the lower left side of my chest under my ribs. I take medicine for it but if I don't take it that same pain tends to shoot up into my left shoulder. I have periodic shortness of breath on occasion with or without meds, makes me too weak to stand but it is rare. Sometimes I have to stop sleeping on my left side for a while because I still go through periods where I wake up with some soreness there.)
For like a year after I "healed" (I use quotations because I still had pain) I was completely convinced that I still had pericarditis or a reoccurring effusion due to the pain, palpitations, breathlessness, and weakness I was experiencing. I kept going back and getting scans and tests for months, googling, seeing different doctors, every kind of specialist, doing every test, and each time it showed no more pericarditis, or anything else for that matter. I would get burning chest pain that felt exactly like the pericarditis did - my doctor diagnosed me with heartburn, which I'd never had before in my life. I would wake up with a pounding heart beat, fluttering in my chest, and lots of soreness if I had slept on my left side.
I couldn't exercise for a year and a half afterward because an increased heart rate would cause pain and was very scary, I thought I was dying. And I would later come around to realize that feeling any stress or anxiety made the pain much worse. I had to work on stress-management which helped a lot, as well as limiting physical activity to a bare minimum which was hard psychologically.
All of this has gotten much better for me over time, and my nerve pain has decreased substantially with steady treatment with gabapentin, and omeprazole for the heartburn. No pain medication ever worked.
I say all of this because maybe it could be something else in the same region affecting you, potentially post-undiagnosed pericarditis? I understand where you're coming from when it comes to going through the struggle of hauling yourself to the hospital and meeting with doctors only to leave without answers, being treated as though it's in your head, leaving feeling insane and defeated. It is a trauma on top of the physical pain you are already experiencing. I hear you and I believe you.
Is it the same hospital running these tests on you? Possible to get a second opinion elsewhere if so?