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Unable to receive a dx, don't know where to turn next.

Chronic Pain | Last Active: Feb 18 5:27pm | Replies (29)

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@emo

I’m so sorry to hear =( It’s so frustrating to not get answers. Ultimately, it took me 3 years to get primary diagnosis for chronic pain and nearly 10 years later to get what I hope is the missing piece of my diagnoses.

I don’t have much experience with cardiac issues, but two things stuck out to me: Do you have reason to believe you may have long covid? I have long covid and many of the symptoms you’re describing are similar to what I’ve heard others in the long covid groups on Connect share about, things like unexplained pain, palpitations, shortness of breath, and fatigue.

It might be worth checking out some of the long covid discussions here (of course there are also cases of people getting long covid who has mild or no symptoms initially too so it could be hard to know).

Even without that you could consider seeing a pulmonologist and/or your PCP could order a pulmonary function test in case the pain and shortness of breath is related to your lungs and not your heart.

The other thing I thought of is POTS. I have POTS and it can cause chest pain and fatigue. It’s an autonomic nerve disorder where your body has difficulty adjusting and maintaining your blood flow to your upper body and brain, so your heart rate increases to compensate when you change positions. It can cause chest pain and fatigue because your body is in a constant state of fight or flight.

Those could be two things totally out of left field, but I figured I’d share in case it was at all helpful if only to know you’re not alone.

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Replies to "I’m so sorry to hear =( It’s so frustrating to not get answers. Ultimately, it took..."

Hi!

Thank you so much for your insight.

Originally when I first started having these symptoms and ultimately the dx of pericarditis (which my rheumatologist said is wrong) they ( the ER and cardiologist) thought I may have had covid or an upper respiratory infection, but I had neither and was tested probably 10 times in 2 months or Covid with a negative result every time. I didnt even have a sniffle 3 months before this started.

I was also tested for POTS a year ago and it was ultimately ruled out. My rheumatologist believes its not cardiac related but Idk what to believe or think anymore lol!

I haven't had a pulmonary function test done yet, so that is def something I will take note of to do.

I appreciate you!