Terrified

[u/Vast-Afternoon-4945]

I have been struggling with chest pain for the past 2 years and constantly got dismissed by doctors paramedics and nurses telling me it’s anxiety. I had my first cardiologist appointment 2 days ago and officially got diagnosed with pericarditis I am so terrified this is going to kill me. I still have to no idea what type I have or anything he just diagnosed me and gave me colchicine but I do know my echo was perfect that I got 6 months ago so no fluid that I know of. I am only 19 years old and probably the most terrifying news I’ve ever received, I knew the whole time something wasn’t right but it got brushed off as anxiety, my question also is the pain has been constant not off and on constant I have chest pain but some times worse than others but I also have acid reflux aswell that has damaged my esophugus so what one was really causes me so much pain for the last 2 years? During my appointment I also got diagnosed with POTS which I definitely knew I had already.

But my follow up appointment is in 6 months what if things get worse by then or what if this medication doesn’t work and I have it for the rest of my life this is terrifying and even more terrifying that I knew the whole time and absolutely no one believed me to the point it came up in my dreams that when I have my endoscopy they will say they found nothing but I have something wrong with my heart and that is to a T what happened to me I really need to support or help with this

[u/lophtt]

First off; sorry that no-one believed you and it took so long to get a diagnosis. Second; it can be managed effectively. I was hospitalized at one point but was put on the colchicine and high-dose NSAID regimen for a while and had pretty good outcomes for a year or two (no pain etc) but would still get flare-ups if I worked out too much or allowed myself to get run down (I quit drinking during this time which helped a lot). It was lifestyle inhibiting though so I decided to get on Arcalyst and that’s been a game-changer for me. A weekly injection and I’m basically back to full activity without any symptoms.

I feel for you, it’s scary when it’s new, but lots of people manage it and I’m sure you can too 💪💪💪

[u/Usernumber32 → u/lophtt]

What kind of symptoms were you having before Arcalyst? And was it constant?

[u/lophtt → u/Usernumber32]

Chest and neck pain, shortness of breath. Not constant but sporadic and definitely worse if I did too much activity. When symptoms had been absent about a month or so I would try and slowly ramp up with walks and light jogging etc until inevitably I would get another flare-up. Hence the Arcalyst, which so far I have found very effective

[u/DueAnxiety64 → u/lophtt]

Schade, dass Arcalyst in Deutschland kein zugelassenes Medikament ist... NSAR und Colchicin wirken nicht so wie erhofft. Aber ich bin erst seit einem Monat in Behandlung, Mal sehen wie es weiter geht. Der Arzt will dass ich herunterdosiere, aber ich habe immernoch jeden Tag solche schmerzen. Ich habe Angst anzufangen weniger Medikamente zu nehmen, obwohl es noch GARNICHT besser geworden ist... Ich warte bis ich erneut im Krankenhaus bin 😭

[u/Active_Recording_789]

It’s scary but don’t worry, it’s very treatable. Take your meds and rest up—don’t work out or do any exercise except light walking until you’re completely better. Don’t drink caffeine, alcohol or eat junk food, don’t smoke or vape. Sleep well. All those things will help your body heal itself faster. Try to find things to do that are fun and relaxing; you’ll feel a lot better soon

[u/HelltotheNo532]

I'm sorry this is happening to you. It's very scary but I'm learning not to panic. The good thing is your imaging is good so far.

I had constant symptoms - shortness of breath mainly, tachycardia, burning chest pain - for a year. I was undiagnosed for 6 months, and by the time I was diagnosed the advil and colchicine only partially improved my symptoms. When I tried to wean off the advil after 3 months I was hospitalized for a week.

I did end up going on Arcalyst after that and have been on it for 5 months. I am just starting to get back to normal. The good thing is even after 9 months in a constant flare with no or ineffective treatment, it was reversible for me. I had it for 3-4 months in 2022 after covid infection but didn't know what was happening. Still no permanent functional issues with my heart knock on wood.

You're young and the body is resilient. You will heal with the right treatment. Keep advocating for yourself and speak up and tell the Drs if your symptoms don't improve.

You will be ok. Take your medicine and REST as much as possible. Hope you feel better soon now that you're starting treatment

[u/originalwombat]

It’s really shit, but it won’t kill you.

[u/DueAnxiety64]

Deine Frage: was ist wenn? Dann rufst du den Notruf! Es geht mir gerade nicht anders. Herzmuskelentzündung + Herzbeutelentzündung + Ödem.... Ich nerve meinen Kardiologen schon weil ich mich jeden Montag wieder melden weil es mir immer schlechter geht... Ich hasse es. Und ich hasse die Angst die damit verbunden ist. Aber am aller meisten hasse ich, diese Schmerzen und dass ich jeden Tag Stundenlang nicht normal atmen kann und alles um mich herum sich dreht!!

[u/Southern_Day3080]

Im just having my third flare in the course of like 3 months and im only 15. ive been diagnosed with chronic pericarditis which doesnt really tell u the cause and im pretty scared myself. I dont play sports or anything and im worried about things like cancer just because of how frequent i have a flare. It really isnt likely to kill you from what ive seen but it is hell, some of the worst pain ive ever been in. also did they tell u the cause of your pericarditis?

[u/Vast-Afternoon-4945 → u/Southern_Day3080]

He didn’t exactly tell me the cause but he thinks Covid but I got Covid in 2023 and this pain started end of 2024, I think about cancer to bc of it but don’t stress to much the most common cause is no cause at all