I saw my PCP today to follow up on the hyper mobility, joint and muscle pain, and weakness. I also brought up that I subluxed my back on Saturday and he didn’t say much about either thing.
Told me my echocardiogram was normal, which is a plus. Told me he will not start me on any more meds as I’m already on 14 but that includes vitamins too. Told me a brace is okay but good luck finding something for joints other than ankle and wrist that are readily available. He did put in a referral to the EDS specialist at the University of Iowa but who knows how long that will take to get set up.
I did mention how my PT didn’t seem to do much. Yeah the pain is diminished, but it was replaced with numbness. I also mentioned the comments PT has made about hyper mobility being normal which I agree with to an extent, but the amount I have isn’t normal. Again he didn’t say much about it.
I guess I’m at a loss for what to do. I know there’s nothing they can do for hyper mobility, but can’t they still do the MRI that I pushed through 6 weeks of PT for? Can’t that help me find a PT that works with hyper mobility and knows how to treat it?
Yes, I know I’m fat. Yes, I have mental health problems. If my weakness, pain, and hyper mobility were related to those things it would’ve been a problem 20 years ago, not just an annoyance and me being “clumsy” with bad posture. Also it would’ve improved when I lost 20lbs a couple months ago, but it didn’t it actually got WORSE!
Sorry about the rant/vent I just don’t know what to do. I’m missing work because of subluxations which I can’t afford. I have a support team, but they’re all paid to support me (therapist, dr, and home aides). I feel lost and alone and my mental health isn’t doing the best.
#EhlersDanlosSyndrome (?) #Hypermobility #Depression #Anxiety #quietborderline #BorderlinePersonalityDisorder #GastroesophagealRefluxDisease #HiatalHernia #dismotility #Gastroparesis #Endometriosis (?) #Anemia #Malabsorption #BingeEatingDisorder #Tachycardia #Hypertension #ChronicPain #weakness