Hi Rachel,
I'm layng in bed, now week 3, realizing I'm kind of the only person who cares if I have any kind of life. I know yoy have read my posts re: CRPS, post 4x laminectomies etc.

I recently fell (10 weeks) and have pain in my right buttock I never had before. I'm feeling very trapped in life right now.

Walk-in: xray/mri. "Its your back. Let me inject you."
Me: "NO. I have CRPS, it can spread and you don't even know where the pain is from to know where to put the needle. The pain is in my hip not my back."

Referral.
I go to an ortho surgeon.
Dr: "you have an SI sprain. I will inject you. Or put in a scs. You probably need a fusion but I won't fo that and you won't want me to."
Me: "No spinal cord stimulator, they rarely work and scar tissue makes thing worse esp with CRPS also. You don't kniw gor sure its my si joint, that's not even close to the pain. The pain is up in my hip crest. No to an injection."

I get a referral to a hip guy by my pcp. He looks at my mri, decides its my back without seeing me and refuses the referral.

Me. Ill just go to bed till I die because I can't even pit weight on my leg anymore. This pain is taking me down and I have a pretty high pain tolerance from 45 years of crps - big spread from long covid. I have been in bed for 3 weeks. My 02 without cpap is high 80s. Pulse 130-150 on exertion. BP no.longer controlled die to change in drug store and brand of drug. Hopefully getting fixed, long story.

I'm laying here while my dr arranges home nurses to help me bath. I am deciding tho I've fought a wheelchair for a year, ok. This is the beginning of the end. I fell. We don't know what I did because nobody will help me figure it out. PT thinks I might have torn my gluteus muscle. Home nurses might as well be hospice because nothing is being done to get me out of bed, just to accept I'm here.

I'm not ok with this ending up being the end of my life! I'm 69 and fell. Prove its my back and ill live with it in a chair I guess. Waiting for the day I feel done and leave because of something so so stupid. I fell. Something happened. Just tell me what so I can get out of bed before I get a blood clot which I seem to be the only one who cares. I keep thinking I wish I had hit my head on the tile floor instead of my butt and just died.

Last night I'm thinking again about PRC. My insurance pays 100% medicare/medigap, plan g.

Going there lets my pcp off the hook which I feel too mad to do (weird I know dince its about my life, not theirs.) I started the process last year but then november came and there wasn't any place I could afford to stay.

Now summer, I can probably get an airb&b place for a month near the hospital.

So, there are reasons to go in general because of pain. I don't take any opioids tho right now I'm on prednisone 20mg just to get me through the pain. I asked for a low dose, she gave me 2.5 which did nothing so she jumped to 20. No help with my hip pain and I kniw coming off is a nightmare with most likely a nasty crps flair.

Help. Can PRC help with diagnostic testing at all if in prc? If its my back, well ok. Then I need intense PT because I won't do nerve blocks anymore. Nothing invasive.

Would live your thoughts. I'm withering away in bed and seem to be the only one who cares as sui feels like it will be the end result. Because nobody else cares but I do. I just fell! I've lived with crps and etc for 45 years. This stupid fall is what ends my life? I'm 69. I've decided to do.life in a wheelchair even tho I probably don't need to.its just lack of a dr caring to find out what is wrong.

I quit PT and Chiro because walking got to be non-weight bearing.

What about PRC before I just give up on myself abd the entire medical profession. I want to.just quit therapy, never leave my house or bed again till they find my body. Lack of desire to help find out what is wrong is about to take me down for good. I'm dehydrated from just sleeping, not eating, not drinking and trying to not care.

But I do care. This stupid fall. Something happened. Will prc help but also try to find out what is wrong with this new hip pain. I get drs not even touching my body but weiting notes if my reflexes, leg strength etc but never touched me and not even paying attention to where the pain is. Look at my mri and say "yup back."

I'm a nurse. You can't note reflexes if you never touched the person. I'm laying in bed eating sugar.

I need help to care. I need help from somewhere. I don't take opioids tho I take 1mg of ativan for years at night. Will they take me off of that "cold turkey" as its such a small dose. When I've done that my anxiety goes thru the roof.

If I apply to prc, should I wait till I'm off prednisone? Take myself off ativan slowly first? Will prc see that this hip pain is different, bew, and help me figure it out or do the same as everyone else. "Shut up, its your back."

Help??? Thoughts??? @rwinney

I too have central sensitivization with crps. Watched part of the video.

I feel desperate and you know that thing of "if I go, leave the world, then they will know I was actually hurting." Toxic stupid thoughts and they still won't care except they can be done with me.

I want to be done with me too.

I.keep thinking it just not fair. A stupid fall and lack.of any dr giving a crap ends my life. Stupid. Angering. But close to just giving up. It feels like that's what they want me to do. I'm very concerned about depression as I'm bipolar and that is a long dark hole I can't afford to go down.

Thanks Rachel and all who read.