what… do i even do??

i’m not formally diagnosed with anything. i’ve had what i now know are and were dislocations/subluxations in most of my joints for as long as i can remember. doctors have written it off as growing pains or stress or a million other things.

over the last year, on top of a surge of other ongoing or chronic health issues, my joints (mostly my shoulders, hips, and knees) are partially dislocating exponentially more often, usually multiple times per day now. i’m in constant debilitating pain and it’s affecting my ability to do almost anything except lay down and sleep, and even then i am often woken up by pain from a dislocation in my sleep. i walk with a limp because of how bad my right hip has gotten within the last few weeks and even sitting in one position for more than a few minutes is extremely painful.

i’m lucky enough to live somewhere where i can directly schedule with a physical therapist without a script. my insurance just changed to something that the local (and only) hypermobility specialist PT in my area accepts, so i became eligible to schedule with them. i have a consult next week and also have my annual physical in a few days.

what can i do or say and explain to my medical providers to try and get some meaningful answers, treatment, and relief? what worked for you when talking to medical providers that got them to take your pain and discomfort seriously? is it normal to have dislocations suddenly worsen like this?

i can’t keep going like this. my quality of life sucks and i’m hemorrhaging money because i can barely work. my interpersonal relationships are suffering because i am relying so heavily on my household for help. it’s difficult to find enjoyment or peace when my pain has gone from a daily 3 to a daily 8. literally any advice is welcome. thank you so much.