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Old 04-30-2009, 05:10 PM
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alaskastephanie alaskastephanie is offline
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Join Date: Apr 2009
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15 yr Member
alaskastephanie alaskastephanie is offline
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Join Date: Apr 2009
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Quote:
Originally Posted by miatri View Post
hello all, i need to gather info about what/how rsd is impacting my joints and bones, perhaps someone here can offer me a place to start my search????

the bones move out of place and/or r weakened to the point that i cant squeeze a faceclothe or rub my face, that would be the wrists. one shoulder comes outa whack regularly and after i get my breathing under control i can move it back and breathe thro the after burrrrrnnn. tops of feet feel like all bones r being crushed, thats a daily deal.

couple days ago when bones popped outa left ankle it took awhile b4 i realised i could maybe pop them back, big ouch but it worked. few more days b4 it hit me that this is a 'spread'. yesterday on our hike as i was being very gentle with left ankle, right one actually initiated similar sensations of being broken altho no actual popping out of bones.

so i'm thinking the rsd is doin something in the joints and its probably time for me to do the research on this process.

any and all directions gratefully appreciated, blessings from the forest
This could be a kind of Ehlers Danlos and you should be tested for it/seen by a rheumatologist. But be prepared a lot of them will dismiss you cause they don't know what Ehlers Danlos is and would rather brush it off.

as to the dislocations.. they suck and living with them is a constant pain in the neck, back, elbow, ankle, collar bones, shoulders, wrists...etc

The docs that know the most are actually in the UK. check out **
Ehlers Danlos National foundation.

Last edited by Koala77; 04-30-2009 at 07:11 PM. Reason: As per NT guidelines
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