I’ve been dealing with potsy symptoms for 10 years, and got a diagnosis about 2-3 months ago after severe episodes and many ER visits that even after being diagnosed and being unable to get out of a bed I was kicked out and ended up in another hospital where I left after being traumatized even more and stamped with a somatic disorder. (After I’d already had a pots diagnosis)
I saw small micro improvements with some meds here and there but recently other worse symptoms have caused a spiral of depression and hopelessness.
I’ve got pain I can’t do much with, almost no support, family that think I’m a manipulator or in best case think I may have a potsish syndrome but it’s just “basically a panic attack”.
things keep shifting and recently my gut seems to have shut down and I can’t keep any fluids in, severe gut burning, lower back pain, now vomiting that is getting worse if I try to eat or drink anything every morning.
I’m pretty sure I have ptsd from the hospital stay, And the way I was treated.
I probably need to try IV fluids but I’m so scared of the hospital now that it sends me basically into a spiral when I have a flare.
Ive seen a specialist that was nice but didn’t have much time to spend with me and who I can not really talk to, I have no other doctors that really buy into how bad it is or even know what it is yet.
im basically bed bound 99% of the time and do as much sitting and moving and walking as I can (it was slightly better before this crash but not much.
I have one close relative to help me some of the time who’s health I feel like I’m deteriorating with all my mood swings and pain.
I don’t know what to do to get away from this precipice. The agony and suffering seem interminable.
I’m not even sure it’s regular pots because the first hospital I ended up getting admitted to was pretty much convinced that I was just an addict coming off something for days and weren’t even sending doctors to see me for 4 days. (I’ve never even done light recreational pot and even stayed away from basic painkillers most of my life - and since I’m on gov insurance they pretty much didnt do any of the normal tests you might expect.
Complain of extreme heart pain, and you have a referral to a cardiologist because of a heart murmer? No sorry no cardio for you. Extreme gut pain that would Warrant an ultrasound or a ct? Sorry bub, we are canceling that eeg too.
Things aren’t working and worse symptoms keep appearing to the point where my hospital induced ptsd and the lack of support and help are cracking my sanity. I don’t want to end up in a psych ward where they will torture me with meds that will kill me slowly and I feel I have no one who will go to bat for me if I’m critical enough to end up in the hospital. My emotions are so shredded that if I end up in there I won’t be composed enough to defend or advocate for myself.