What Happened to Doctors?

That's promising... I'm at the "positional burning in chest made worse with anx" and "shaky heart palps" stage, with some twinges reminiscent of how this started, way back when. I am choosing to believe that is a good sign. Those fight or flight may be things re-balancing, yes? I notice that sometimes before a no symptoms period, I often anx spike beforehand... like my body is battling and winning.

The only arguably good bit about all of this was that my sports injuries have (finally) healed. No more back pain.

"How were you able to work better with your doctor?"

I fired my PCP after it was clear that he was going to be more barrier than partner. He resisted changing his diagnosis even when presented with symptoms that did not fit his 'sports injury' theory. So here, I would say 'fire doctors who do not listen.'

"How did you get heard with a doctor who seemed unwilling to believe you?"

I think the better question is "how do you find a doctor willing to believe you?" First, read reviews and pay particular attention to negative patterns. 'Spends the time,' felt listened to' are good. Doctors who also teach can be valuable; they're often well-informed on new developments and may have read studies your standard PCP has not.

"What tips?"

Assemble a good team of curious, diligent doctors. Do your own research, read studies, and don't be afraid to ask your doctor to try things. Push for novel treatments if you're comfortable with them. Be proactive; your doctor SHOULD be working on your case offline but keep them active and engaged.

Don't give up.

Fight-or-flight episodes are a common LC symptom from autonomic nervous system dysregulation, I believe. And I choose to believe they too will exit my life someday. It’s interesting how our symptoms ebb and flow. Old ones disappear and new ones are revealed. I wish you and everyone here continued recovery!

Why do that when they can make more money rolling through patients?

I've kept pretty good notes and I provide a short summary to new docs. The rheumo doc could not be bothered to even glance at them, so we spent our time rehashing things he ought to have already known.

When I find a doctor who is willing to "THINK" and be serious about figuring it out - I will let you know...Just saying, I have been to my GP, 3 Cartiogolist, a pulmonologist, and so much bloodwork and CT scans.....it is unbelievable.....NOTHING is from all the results and I get no suggestions as to where to go from here... just silence....

Couldn’t agree more. My gaslighter encouraged me to describe all my symptoms in detail and seemed sympathetic. He could see my rash that made me look like a human alligator. This was right before he offered me Prozac and a referral to a psychiatrist.

As others have stated, Covid simply made the problems of our healthcare system visible.
We have been on this road for some time now.

“Managed Care” is looking for profit first and foremost. Hence the 15 minutes doctor appointment that is basically worthless, The perfunctory exam where you are fully clothed, and the doctor barely touches you. Then going over only the protocol of blood pressure, mammography, cholesterol, colonoscopy, blood sugar and of course flu shots, before the doctor will even address why you came in! By the time you get to what you wanted to discuss, your time is up, and the doctor has a hand on the doorknob.

I did not understand the state of our healthcare until Covid, because I was a healthy person.
Now I know firsthand what a nightmare it is.

I agree with so much, but not all, of what has been said in the comments above. Early on I was advised to keep some sort of track of my symptoms - mostly because my cognitive impairment did not allow me to remember all my symptoms. Whenever I see a doc, I bring an overview of my symptoms and where they stand now. My PCP is incredible and reviews every word before she sees me. Two rheum's looked only for autoimmune answers and dismissed my overviews. The last rheum knocked my socks off. She was beyond thorough, asked me many questions, studied my overview, put me on colchicine for the muscle pain (which helped), and then unfortunately was removed from the list of authorized providers for worker's comp. My long-time cardiologist told me I was crazy and there was no reason for my O2 to be dropping, for shortness of breath, for fainting, etc. Now, 4 years later, he has diagnosed me with POTS, orthostatic intolerance, new heart murmur, and aortic stenosis. My latest negative experience is seeing a specialist who ignored my LC diagnosis completely, took my overview, and then wrote that I was too focused on my symptoms and that there was no research showing cognitive impairment was associated with long covid.

Like every profession, there are the good, the bad, and the horrible. I have met all three types in the past 4 years.

I do believe, like others above, a multi-disciplinary approach would be helpful. The LC clinics I have been a part of are multidisciplinary, but there is nobody coordinating the care. There has to be some type of communication between the providers about the patient. If everyone looks at the patient solely through their specialty lens, potential connections are going to be missed.

Covid was a new virus, long covid is even newer. At the end of almost every peer-reviewed research article is a statement that says they are at the very beginning of finding out the causes of the various symptoms and more focused studies are needed. The good doctors are doing everything they can think of to make our lives easier given the small amount of concrete knowledge they have about it. The other physicians, I am trying to avoid.

I have good insurance, so I would have gone directly to the Specialist. I avoid PAs - they should not have responsibilities for diagnosing complex cases. They don't have the training.

Well I agree but I wouldn’t have gone to a specialist right away, as the question of what was causing the pain had not been resolved. And I agree with you about PA area of responsibility. I don’t think the one who saw me even thought of a GI problem.