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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

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love & other drugs #Disability #MuscularDystrophy

#Disability #dismotility #Arrhythmia #Anxiety #Bipolar #Depression #MuscularDystrophy

A much needed visit to Polesden Lacey this afternoon... I would have easily spent another day in bed as sickness, tubes, pain & 24 hour feeds, medication & drip feed water bottles is all my life seems to be about since having dismotility & I can feel the toll it is all having on my body.
I wish I could say that things are better for me now, since the extension, but it doesn't seem to be getting much easier, I hope that by the next time I write here I can say things have taken a better turn & I hope that my nutrition is on the up soon so I can give some good news in that respect.
It hasn't been easy for myself or my man, we have been faced with so much in such a short space of time, at times we are definately worried & find ourselves scared. The realisation of what we have been through in terms of it all happening in a relatively new relationship sometimes makes us overwhelmed. But we keep going, keep laughing, have a few moments of tears then we keep eachother smiling again.
I always say he can leave if it gets too much or the reality makes him sad. I wouldn't want my situation to make anyone feel sadness that they don't get to enjoy their life because of it... He just turns around & says
"I love my life, because I am with you"