Thank you for the information! My gosh. It sounds very trying. If I recall, I think I read posts from you way back in Oct., unless someone else has your same condition here on the site. (Edit: I noticed you just joined, so it is someone else with the similar condition.) I am in similar shoes as you, but mine are from medical errors and a pregnancy that moved my pelvis. Wrote a short version of the story up here--it was way worse and more complicated in real life:
https://sanctioned-suicide.net/threads/what-does-your-typical-day-look-like.4662/page-2#post-105784
That car wreck sounds awful. I hope you didn't sustain injuries. I am not too familiar with your condition but have read about it when looking into mine. From what I know, prolotherapy does not work for people with your condition, but have you looked into it in any case in case I am mistaken? I am too leery of Drs anymore to let anyone touch me ever again, so I am not doing that myself, even if it might help. They would have to do practically every joint in my body, and I won't be able to deal with the pain it causes on top of the pain I am in.
I have been entirely housebound and mostly bedridden for the last 3 years. I have only gone to Dr appts during pregnancy and after I gave birth and PT right after the injuries (for 3 mo). I have not even bathed in 7 mo after the pain of doing so once or twice a month got too severe to keep trying to. I had been unable to right after the injuries, and I had no idea not bathing for a week or so would make skin (invisibly) build up, so now it comes off after I get wet and takes about 7 hrs to remove, by rubbing with your hands all oiled up, which is brutally hard when in pain. Being so icky is making me want to CTB ASAP!
I was only given the options of Tramadol, Soma, and Gabapentin--none worked. I tried everything I could find online from supplements, oils, devices (TENS, Infrared) various PT programs. Now I am out of the Rx painkillers and only on Tylenol/aspirin, and I won't see another Dr for that worthless junk that wouldn't even let me be able to take a shower. I am in the same shoes as you as for the pain clinic. I can't even get to one b/c it is 1/2hr away, and go knows how many MRIs and imaging tests they'd then put me through, which is impossible in this amount of pain. I've even been living w/ an abscessed tooth the last year b/c I can't sit to have it fixed or make the 10 min car ride again for the treatment appt. It is just miserable. Yes, all the Drs diminish it and act like it should not be too painful. Even my family is very disbelieving of me, claiming I should have healed (despite that torn tendons and ligaments and muscles never heal fully, much less my spine and pelvis being all askew).
I had something similar to you when I had a panic disorder for 2 years in my 20s. My heart rate would go sky-high at literally everything. I also used to faint constantly from hormonal issues, starting as a teen, and once almost died from cracking my head on a toilet when I fell. Was unconscious for a day in the hospital before coming to. That cleared up in my 20s.
I have a lot of issues regarding eating that began in pregnancy and continued till this day, likely on account of pain and hormones. I almost starved to death in Oct. by not being able to eat food, and then couldn't take water other than tiny sips. I was losing 1-2 lbs per day, which is bad because I was always thin and only 100 lbs to begin with. Now I can eat mostly only white-flour things in small amounts, like a bite of a bagel or pretzels. I am making headway on this issue since Oct. and am back up at weight now (100lbs). I used to be a super-healthy eater prepreg, and now I am so nutrient deficient that I am surprised I am not dying from that after 3 years.
It is just so brutal, and I can totally empathize with you. I am so sorry but at least glad someone out there understands, as I have been getting treated terribly the last 3 years by Drs and family on account of them not getting it.
Thank you so much again for the reply. It was heartening to talk to someone who is going through something similar.
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