Rapidly declining

I’m a 22yo female. I have a history of POTS caused by long covid (December 2020), sudden onset flaccid neurogenic bladder in August now with a suprapubic catheter, chronic UTIs throughout the fall now infection free for a couple months, mild degenerative disc disease, and MDD and EDNOS. Ever since I woke up one day in acute urinary retention in August, I’ve been having progressively worsening issues that I think may be more generalized autonomic dysfunction or possibly ME/CFS. They were worsening more gradually in early September but started to speed up after I ended up with chronic UTIs and severe chronic bladder pain from foleys and straight caths, was hospitalized for second degree burns after spilling boiling water on my lap, and had a week long spinal headache after an LP for research. Things have been worsening much quicker since I had surgery for my SPC, though since then I haven’t had a UTI and my bladder pain has been well managed.

I have episodes of shakiness, worsened nausea, dizziness, weakness, extreme fatigue, an increase in weird brain fog episodes (going to the microwave for an ice pack, back when I was working I did a transaction for a $20 as if it was a $50 bill and didn’t notice until a coworker said something), and just overall feeling like shit. They are usually triggered by extreme temperatures, dehydration, caffeine, positional changes, or exertion, though occasionally there isn’t a clear trigger. They’ve been getting more and more frequent and more severe. Even outside of the acute episodes I’m constantly exhausted. It’s to the point now that I had to start using a cane today and bring a chair into my kitchen to cook some pasta because I was feeling too weak to keep standing and was worried I might fall or pass out. I’ve also been dealing with chronic nausea and vomiting and constipation that has worsened along with all of this and am waiting to see a GI doctor. It honestly feels like it’s exhausting to breathe sometimes, like it takes conscious effort to just make my chest rise and fall. Sometimes it feels like my brain is so foggy my thoughts feel like they’re slurring words. It feels like my body is shutting down.

I saw a neurologist earlier this month who ordered an EEG, blood work to test for myasthenia gravis and to recheck my ammonia that previously came back in the 70s but was never followed up on, and a SLUM. The EEG was done and came back fine. I still need to get the blood work and SLUM. I had an MRI of my entire brain and spine back in August and it was fine other than mild degenerative disc disease that I was told isn’t causing any of my issues. My thyroid was checked at some point over the summer and was normal. I’ve had a full rheumatologist work up and there isn’t anything autoimmune going on.

I have a follow up in late January with her. I just don’t know if I should reach out to her or my PCP over the fact that this is getting worse to the point I’m having to use mobility aids and am practically house bound. Back when I saw her I was still able to go about my day pretty well and wasn’t needing and mobility assistance. I now spend almost my entire day in bed and even getting up to the chair is difficult a lot of the time. All I have the energy to do is clean my apartment and I have to do it in short chunks over multiple days as I can’t really do too much at once. I’ve really gone downhill so fast. Back in April I ran a 5k and now it’s December and I have to sit down to boil some water. I don’t know what’s wrong with me but it’s awful. I don’t feel like a human anymore.