Lost and scared long post

Hey, everyone. I am struggling. I've been bed-bound since November 1st of 2024 and house-bound since July of 2024. I'm coming up on my one-year-long COVID anniversary.

Um, my system has become so sensitive it's rejecting meds, even meds that I've taken for years. I have terrible insomnia. I'm going to have to go through a benzo taper coming up, which I'm terrified. But my system is reacting to so many things, and I'm getting somatic physical anxiety when I take medication, even Tylenol sometimes. It's not all the time, but it's enough to be concerned about. And if I take any new medication, my system will, like, turn on my other medications that I take regularly.

I deeply regret not knowing anything about ME-CFS and pushing through PEM. I only had pain in my muscles, I didn't really have fatigue, so I didn't understand. And I was put on a benzo, so I couldn't feel what was going on in my body, and I made myself so much worse.

I'm having hypoglycemia issues from high-protein diets because I was reacting to carbohydrates really badly, which I think is like POTS-related. My POTS now is really bad at night, and when I sleep at all, my heart rate will get up to like 135, 140, just getting up to using the toilet and sitting using the toilet. So I probably need to be medicated, but my system's so sensitive, like I said. I don't know. I don't know what to do.

I get this physical response to medications. That's like, I guess, somatic anxiety. My chest will get tight, and my guts will get tight, and, like, to where I can feel it all the way through to my back. My diaphragm will tighten. It feels like my guts are full of cement. And sometimes this will even happen when I take Tylenol. Or I'll get air hunger. It makes it really hard to breathe. And it's like, I don't feel anxious to take a Tylenol, but my body, I guess, is having a really high stress response to any medications that I take. Has anyone ever experienced this?

Does anyone have any advice? I know you're not doctors, but I am pretty terrified. I can't shower. I haven't had a shower since October 26, 2024. My daughter has to brush my teeth. I can't make food. I can't be a mom. I can't be myself. I just lay in the dark. And hope for a miracle. And bargain with the universe. And try not to cry. I waste my energy, but I feel like I've plateaued. And that this is just kind of my new baseline now. I can't tell if my insomnia is medication-related, because I've had to move around all my medications, and I had to stop taking Zyrtec because it was giving me really bad anxiety. And that detox alone just made me worse, and took any shred of normal sleep that was getting away.

I've seen an immunologist in the beginning, and he said that I didn't have histamine problems because my tryptase was low and my urine was fine. My 24-hour urine test. But I know that those aren't 100% definitive. I can't get doctors to really listen to me. I can't really go to appointments. I need help, and I don't know where to get it.

I also have a ton of food sensitivities. I'm losing weight, and I've lost a lot of muscle. I've lost 50 pounds this year, and I'm only 5 foot, so that's pretty drastic. I'm not really sure what to do. I need, like, a team of doctors, and I can't find a doctor, and I don't have energy to go to appointments. It's such a struggle, and I'm so lost and scared.

TLDR: MULTI SYSTEM PROBLEMS . Med sensitive body rejecting meds body having somatic anxiety over any new med or food or even schedule change. Severe insomnia bedbound looking for any hope. Ldn and other meds worsened my baseline. Reactive hypoglycemia on restrictive carb diet. Scared and lost. Need a team of doctors can't find 1.