@truwomandi

What you describe is why this is called in an "invisible illness."

If you have trouble with being dizzy, becoming dehydrated easily, having poor sleep... all of those things can be addressed with and without out a specialist.

The issue is that long COVID and ME/CFS are diagnosis of exclusion, meaning you have to run all kinds of tests without hitting on anything before it can be diagnosed, if your doctors will even diagnose it.

Because these conditions involve multiple body systems, most general practitioners and even internal med docs cannot or will not treat this illness.

There are so many people in the medical field that believe there has to be a biomarker like a certain blood test or test result that identifies whether or not the person has an actual illness or a psychological problem.

With long COVID, fibromyalgia, and ME/CFS, we have no markers like that.

These are physiological illnesses, not psychological problems. The physical symptoms themselves can cause psychological problems, though!

If you don't have the ability to go to Mayo or another health system that is equipped to deal with this illness, the best you can do in my opinion is address individual symptoms with the specialists.

It took one day for Mayo to identify that I had tachycardia while I was asleep. In the next few days, they identified that I had POTS. There is treatment for both of those! However, these are not cures. They are ways of managing the illness.

If you have non-refreshing sleep, that needs treatment, and that can be identified with a sleep study.

Overnight pulse oximetry can show inappropriate sinus tachycardia and problems with oxygen.

Lean tests and tilt table tests can show postural orthostatic tachycardia syndrome (POTS).

Not everyone with long COVID, fibromyalgia, or ME/CFS has the same symptoms, though.

Some people's lung and heart function are important pieces of the puzzle. Before my first COVID infection, I had a routine EKG, and found that I had left bundle branch block. I don't know if that has affected my illness, but it certainly affects which medications I can be on and anesthesia I can tolerate.

Also, through this process, I learned I have a gene mutation that affects medication greatly, and I've been able to taper off those medications, in addition to ones that affect heart rate.

I would not give up. I would read as much as possible and ask questions. Try to get the tests you need to rule out other issues. There's just no other way.

What I would not do is focus on saying you have long COVID, because a lot of doctors don't believe in that. I would focus on symptoms you are experiencing.

I'm sorry that you are experiencing being a hot potato. I went through that, too. It's taken several years before I got any help whatsoever, and I did not get it locally. In fact I got the opposite of help. 😭