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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

Dysautonomia anyone?

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Unread 02-13-2013, 04:38 PM   #11
MarketRisk
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Wow, thanks for the info. I didn't realise most people who were hypermobile had POTS. Strange old world.
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Unread 02-13-2013, 05:27 PM   #12
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Wow, thanks for the info. I didn't realise most people who were hypermobile had POTS. Strange old world.
Me neither and I'm very interested to know more about this. I've been told by many providers that I'm the most hyper mobile person they've ever seen. From my spine to my shoulders to my fingers to my hips...
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Unread 02-13-2013, 06:04 PM   #13
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if you are hypermobile then you could majorly benefit from a good pt, pretty much all the females i talk to with eds have been dx'd with tos. altho im guessing a few only had like pec minor syndrome.

http://www.hypermobility.org/beighton.php
http://www.ehlersdanlosnetwork.org/t...ersdanlos.html

if you think you have it, go takl to a doc about it because it will change your life. you can ask if they think you have a connective tissue disorder, there are different types.

with ehlers danlos hypermobility type, youre basically capable of completely abusing the crap out of your body every day without even realizing it (what i was doing, knock kneed, whiplash, stretching my brachial plexus in my shoulder etc) we scar easier and from my experience just dont recover from trauma well at all
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Unread 02-13-2013, 06:14 PM   #14
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and i think we're 4x more likely to develop ms than the avg person
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Unread 02-13-2013, 08:18 PM   #15
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and i think we're 4x more likely to develop ms than the avg person
They were looking at me for Ehler Danlos syndrome for awhile but because there's no real treatment for it and the test is costly. I know I was tested for a bunch of connective tissue disorders while on the search for my TOS diagnosis and nothing came back positive. However, as far as hypermobility goes, I'm absolutely positive that's something I have. I can easily reach up behind my back and touch the base of my skull, the discs in my spine can be wiggled 2 inches either way, I'm fully capable of licking my elbow (Snapple cap said it was impossible so I had to try) and all of this is after 2 shoulder surgeries to correct multidirectional instability (due to hypermobility) and my TOS surgery. I have a lot of range of motion that I'm getting from my body not working properly. I'm pretty sure a lot of my muscle knots come from it and it's fully possible that TOS was caused by it.
I was reading the symptom list of POTS and it's eerie. I'd love to be pointed in the direction of where to go from here. What doctor looks into this? What tests can be done? Perhaps this is what's causing my extreme fatigue instead of the TOS!
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Unread 02-14-2013, 06:09 AM   #16
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There's a tilt test where they put you on a bed and then go from lying position to standing. Measure blood pressure and heart rate. They had to stop mine after a few minutes because they thought I was going to pass out based on my readings, not on how I was feeling, which wasn't out of the ordinary for me!

They can give you beta blockers and fludrocortisone (think that's what it's called) to slow heart and increase fluids. I didn't notice a difference, bar the beta blockers making me sleepy. Maybe there are other things that people use that help? I don't find it a problem (compared with the TOS pain!), although it's a little worrying that heart rate goes from 75 to 161 just from lying down to walking...

Told to drink lots and eat salt, which I've always done a lot of. Says on my summary will find standing or sitting for long periods difficult and being in crowded places (why??)

Saw someone for autonomic dysfunction who referred me for tilt test, in case you're wondering re referral route. Probably different in the US?
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Unread 02-14-2013, 10:07 AM   #17
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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

http://www.dinet.org/symptoms.htm

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 .

http://www.dinet.org/what_to_avoid.htm
some people like beta blockers, im a bit afraid to try them. since my bp gets low
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Unread 02-14-2013, 09:23 PM   #18
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Quote:
Originally Posted by mspennyloafer View Post
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

http://www.dinet.org/symptoms.htm

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 .

http://www.dinet.org/what_to_avoid.htm
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?
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Unread 02-14-2013, 11:06 PM   #19
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Interesting link on hypermobility. It's me!!
http://www.cfids.org/pdf/joint-hypermobility-guide.pdf
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Unread 02-14-2013, 11:23 PM   #20
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Quote:
Originally Posted by Louloutinks View Post
Hi yes I have DA too - it is caused by (one of the causes) EDS.

Its hard but I just have to work through it as best I can as I have a child and a job. Off to see a specialist again soon - so hoping I just get more than salt and water as a med!!
Is this like hyponautremia? , the salt related effect...

Sounds very complicated and pain producing...
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