Originally Posted by mspennyloafer
your shoulders sound soooooooooooooo loose
youre definitely more hypermobile than me! i havent been officially dx'd with eds either but theyre guessing i have it because my skin is very smooth and stretchy. i dont want an official dx anyways, i KNOW i have it. you might just have joint hypermobility "syndrome" either way its like tos, a damn syndrome.
are your hands freakishly soft? do they collapse? thats a sign of eds.
if it makes you feel any better, i used to have a "baseball pitchers elbow" pretty bad, now i can't do it! i thought that was joint laxity but i guess the PT helped my shoulders
pots will make you either anxious or a space cadet. i used to think this was some personality quirk growing up but its 1000000 percent POTS
and tos makes it worse. any pain makes it worse. you arent supposed to drink alchol or caffeine or eat sugar with pots. i avoid sugar but im a caffeine addict .
some people like beta blockers, im a bit afraid to try them. since my bp gets low
My hands do collapse, but my skin is completely normal. Either it's the most mild version of EDS or hypermobility syndrome. There's no wondering there... I was looking at the hypermobility scale and I can do practically anything on it. I was told by my orthopedic expressly NEVER to stretch my shoulders because they'll become unstable again. I don't, but I can still do crazy things with them without actually stretching anything. That being said, he did do a phenomenal job stabilizing them without affecting ROM because I've been seen by a few orthopedics who have said I'm perfectly stable and never would have known (even after seeing imaging) that I had surgery on my shoulders at all- they look completely anatomically perfect. If anyone needs to see a shoulder specializing orthopedic in the Connecticut area I HIGHLY recommend Dr. Stephen Bond of Farmington Valley Orthopedics.
Anyway, I was looking at the POTS symptoms and it's crazy. I've been diagnosed with IBS/abdominal migraines, hypermobility, TOS, depression and anxiety-all by the age of 22. I swore up and down that one day we'd figure out that it was ONE thing that I had and not so many. Seriously, who has the body of an 80 year old at 22 years old?! POTS seems like it could explain things as well as the fatigue I have and the feelings of being foggy all the time. I wonder if this is what causes my vision to completely black out when I've been laying down awhile then sit up when it's hot outside? Or makes me feel nauseous and weak after a hot shower? Or makes me hate to change position like getting in or out of a car, getting off the couch, or getting out of bed?
Now, I do have a question for you. Any advice on how to address this with my doctor without sounding like a complete hypochondriac? I would just ignore it because I'm used to these symptoms but I'm not sure how capable I am of working anymore. I'm having to lay down all the time to rest, I can't stay awake all day, I can't sleep at night, and still have a bunch of trigger points that are killing me. I know decompression surgery takes time to recover from and I can look forward to some improvements but I'm not thinking some of this is actually the TOS anymore and if I need disability I need the diagnosis. Any advice?