I just need support - I feel like I’m drowning in my illness

I was diagnosed with POTS in 2022 as well as vasovagal syncope and orthostatic hypotension.

I’ve had this mysterious facial rash that comes usually after cardio (if I walk uphill for ten minutes, hiking, stairs). My entire face flushes except for around my mouth and the middles of my cheeks which are ghostly white.

This usually lasts 2-3 hours. I’m shaky and feel like I cannot breath as well as this impending doom feeling.

I know part of this is from an adrenaline dump, but the facial flushing is confusing.

Doctors have tested me for lupus and it came back negative, and since midodrine has stopped my fainting, doctors have stopped caring about that. I am going back to the doctor to ask for additional meds to help regulate my heartrate better as doing stairs has my heartrate going to 178 in minutes abd then it causes a whole flare.

I felt like so many questions had been answered when I was initially diagnosed and they found the cause of my fainting, but now almost 4 years in, I feel like I am getting sicker. It feels like my POTS is worsening and I feel like I am doing my best but it never feels good enough.

I am trying to work up the strength to get diagnosed with MCAS or EDS but my body is so sick of hospitals as I’m currently trying to convince doctors that my pelvic floor infection doesn’t work.

I feel so burnt out from doctors and the last time I saw a specialist they told me no one could help me and I was left in such a state of disarray that I had the worst flare up I’ve ever had where I was hospitalized.

I just want to know when it gets better. Do I need more meds? More diagnoses?

I’m doing this whole thing on my own so it can feel exhausting to not have a basic support system.

Anything would be helpful.