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

Have you seen a doctor since this started to happen?

hi marleen, nope, i dont go to drs., which is why i need to do some research on whats goin on. thanx for replying, namaste

i havent persay had the same problem . but i do have that feeling like stuff is popping ot of place but no actual dislocation. i see that you dont see drs. maybe there is a oint issue ontop of the RSD. how long have you had RSD for ?

carrie

There is a condition where the ligaments get more and more lax or deteriorate... I can't recall the name of it though...

Ok found it -
Connective tissue diseases -
here's some links about it-
http://www.google.com/search?q=UCTD+...ient=firefox-a

I almost started a thread about this...since my rsd my left shoulder joint is REALLY loose...so much so my pt dropped me until an ortho dr said it was okay to do anything. My tendons in my left hand also slip over my knuckles now...the drs seem baffled. They said they had never heard of this happening. I do know this the more they move the looser it will get...one theory is that when the limb swells it stretches out the tendons too and when the swelling goes down the tendons or ligaments stay stretched (I think that is my problem. The ortho dr said I had something called Parsner's Turner syndrome but then another dr said that that was reaching and that when no one knows the answer the answer is probably because of the rsd. GO TO THE DOCTOR though and let them know! You could have one pop out and have to go to the er to get it back in....if it is really out of joint PLEASE don't do it yourself because you could entrap nerves and vessels without knowing it, or just make it altogether worse. Hope you get better answers then I did. The ortho dr said he wouldn't do the surgery to tighten my shoulder until my rsd had calmed/ "gone away" because surgery could make my rsd worse. Let me know how it goes I would like a better answer too!
Jennelle

My daughter Sarah has hypermobility in her joints (Ehlers Danlos), as do several other RSD and fibromyalgia sufferers we have met and read about. There are different types of Ehlers Danlos, with one being specific to hypermobility. Sarah's pain doc picked up on this during her very first visit and commented that many of his patients have the same thing. This can even affect the heart, so he sent her for tests to rule that out.

I recently learned of a new treatment for this although we have not fully investigated. It is called Prolotherapy, so if you google that you should find additional information.

I understand your apprehension about doctors, but there really are some good ones out there who care enough and know enough to help.

Take care,
Jeanne

Back when this happened, the orthopedic surgeon claimed it was from the RSD, so that is what I have to go on.

I have had RSD in my left foot since 1986. In the late 1990’s, every step became much more painful than it had been. It actually felt like the bones were moving around and poking me from the inside. X-rays and an exam by the orthopedic confirmed that is exactly what was happening. Even to my untrained eye, I could see that the metatarsals were much thinner in the left foot – perhaps about 60% the normal size or smaller. Because of this, they really were “floating around.”

He opened up the foot and placed several long screws into the bones to “tighten up” the first three, effectively bonding the whole upper foot into a solid mass. For the two smallest ones, screws were not possible because of the size. So, a site was opened up just below my knee to harvest some tiny bone material, which was then packed between the metatarsals and t he adjoining bones. This also eventually grew together to make a solid unit.

End result is that foot is an odd shape, making shoe shopping a challenge. It still swells, get purple, burns hot as blazes, and is sensitive to touch. But, at least when I walk, I can’t fell all of those bones banging around.

If anyone thinks this is going on, I would encourage them to get it checked by a good orthopedic surgeon, preferably one who has heard of RSD.

Love,

Mike

bless u all for ur replys!! i've done some research, saw the site about prolotherapy and read enuf other info to figure out it is ligs/tendons and bones/joints deteriorating, stretching and goin lax. after a long meditation i also realised it occured in a severe form in left wrist a few years back, we tagged it as dequarvanes syndrom or some such.

i contacted my homeopath and we r gonna try some mercury to energise the system and c what happens.

isnt it curious that in hearing that others have similar xperiences there is relief? as i read ur replys i'm amazed at what is being dealt with, and the things u'll do to try to fix it. truly courageous people!

as far as cdn. physicians go i'll have to be unable to crawl b4 i'll go back into their playground. i prefer to b empowered, validated, supported rather than demeaned, interogated and invalidated. and i definately prefer peace and sanity rather than war and insanity. do i have a chip on my shoulder or what?!!! loling, really!

heres one edited xample: couple years back i fell 8 ft. landed standing up turned left foot to 3 oclock position, everything detached, foot held on by skin. repositioned in er, xplained by two different sets of drs. why i needed metal inserts to walk again, i agreed. at surgery doors i was turned away and refused surgery. insanity arrived.

sent home with half cast on and told i'd likely not have use of foot. i rehabed myself over next 3 months and have been fine since.

theres a background story to all this, political intrigue in medical arena and unfortunately wherever i go, whatever dr. i c, it rears its toxic head and undermines my access to ethical treatment. i'm so done with fighting for what should not have to be fought for in this country, humane medical care.

anyone familiar with monty pythons movie where the knight has his arms and legs cut off and keeps badgering the other knight? thats the image i have of myself, take away all my limbs and i'll still be cussing and declaring i'm fine to carry on, chuckle.

thanx again, i'm truly uplifted by hearing from u, namaste

is the prolotherapy working??