This is for folks with EDS, hyper mobility syndrome, or similar conditions.
I have my appointment with my PCP on Monday (11/16) morning. I’ve been keeping a log of my pain and numbness as suggested by them for my back pain. I think I’m going to transfer it to my computer and print it out so it can go in my chart. Since I started the log the symptoms have expanded from primarily back pain to whole body pain and extremity numbness. I also have weakness and hyper mobility in multiple joints that’s causing problems (falls or near falls, dropping stuff, etc.)
I found out yesterday (11/9) that my mom lied to me about not having any hyper mobility as an adult. I told her I was concerned about mine after my wrist gave out at work causing me to drop a 30lb box into my chest and she retorted with “I deal with it everyday you just have to get over it.”
It’s already been documented that she doesn’t have any problems so they “ruled out” EDS but now this comes about. How do I correct this info without looking like I’m lying? I just want answers and tools to cope. I know there isn’t a cure, but having a diagnosis would make me feel valid in my struggle. I would be able to ignore my mom when she says I’m imagining everything.
I go to PT, a chiropractor, use an ankle brace, limit strenuous activity (most of the time), ordered a wrist brace with thumb spica (its enroute last I checked), document the more troublesome symptoms (it would be pages long if I documented everything), attempting to eliminate gluten (not so successful so far).
What else can I do to prove what I’m dealing with is real? A diagnosis would help if/when I decide to apply for disability again because sadly it would be one more thing to add to the list of problems.
I guess this kinda turned into a rant/vent, so if you made it this far thank you! My question still stands though, what else can I do to prepare for this long awaited appointment?
#EhlersDanlosSyndrome (?) #Undiagnosed #Hypermobility #appointment #Prepare #Anxiety #Depression #Comorbidities