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

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.

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!

.

gikuzmin21, Did you have COVID by chance? COVID threw all of my bloodwork off and my joints, lungs, gut & reflux worsened greatly. My inflammatory markers have been all over the place for over a year and now they are back to normal, with the exception of my Sed rate still being elevated. It was suspected I had borderline Lupus...now, they say I do not have that. They said I must have had an infection that threw my inflammatory markers off....yep, that I believe was the fact that I had a bad case of COVID. I went to 2 different Rheumatologists. I am still battling some things that I cannot get answers for and I believe it's the fact that I have long COVID. Praying for you to get better. I care. P.S. I had chest pain from COVID, high heart rate and shortness of breath for about 3 months.

May I ask where you are located?

Hand x rays. Balderdash. I’ve had RA since 2012 and my hand films have remained fine because I got
treatment immediately after an acute horrendous onset that took me
From active to dysfunctional. And even today when I continue to have hand pain and weakness, I just rarely have any swelling. And my films are consistent with age deterioration not so much disease. I am RA Factor positive now but was not when first diagnosed. But your ANA result screams autoimmune doesn’t it?

… I have a positive ANA with an ANA titer of 1:2560 speckled…

Anyway sorry you are having to solve this mystery while you feel like - well, not good 🙂

@gjkuzmin21
Welcome to Mayo Clinic Connect!
You are definitely too young to have these pains and suffering in general.
You seem to have had a thorough cardiac evaluation.
It does sound like an inflammatory condition, possibly autoimmune with your ANA result as well as your extreme fatigue.
Has anyone had an opinion about your enlarged lymph nodes? It’s not normal.
It’s a good idea to get a pulmonary evaluation. You don’t mention if you have had any imaging of your chest- X-ray, CT scan or MRI.
Also, do you have pain when the ribs are touched/ examined?
Severe chest pain episodes are also related to the musculoskeletal parts of your chest.

My non-professional suggestion would be to check the spleen. Enlarged spleen can cause similar symptoms although the pain is mostly on the left. There could be referred pain that you’re feeling across your chest.

Many years ago I had an intermittent squeezing sensation on the left side of my chest. My father has had quadruple bypass and 4 stents, but recovered. I had a thorough evaluation with all tests at a leading hospital and cardiologist, including stress test. I was not not fit at the time, but able to do the test. All my tests showed normal. There was no diagnosis. Afterwards, i went about my life and it has never returned. I personally suspect that it was either inflammation, that cleared on its own or anxiety that subsided once I was relaxed.

I hope you improve and find answers that help. It sounds like you have done everything you can.

Hi
I am sorry your going thru this. When I read your post I thought lupus but you said.. testing was normal does your rheumatologist believe in fibromyalgia because a rheumatologist can test for that there are trigger points all over your body I went through something similar in my twenties I am now 65 I was diagnosed with fibromyalgia in my twenties by a rheumatologist I see a naturopathic physician who is amazing I also take medication called cyclobenzaprine which works wonders taking away pain I have multiple supplements that my naturopath has put me on which helps immensely did your cardiologist do a mimbi scan by chance which also they do a stress test drug induced . They inject a medication your on a special bike laying on your back, you're hooked up to a machine where they watch everything your heart does and once you're done the scan you go right into the Mimby machine and lay for 20 minutes. My cardiologist finally discovered my heart condition that way
I wish you luck that's very frustrating

I don’t tolerate narcotics so I am a huge fan of cyclobenzaprine - it was a lifesaver to help relax my muscles enough to sleep after my pulmonary lobectomy. I only used it for a brief while and discontinued my antidepressant during that period because it can result in seratonin syndrome if taken simultaneously. But it’s amazing. If you are old enough to remember flexoril, which was inexplicably discontinued, this is like that drug.