So i spent all of today at UM Sylvester having labs and cytoxin then an xray and appointment with my orthopedic… a few days ago I was hanging out with my daughter doing our hair color and having a very good time:)I was sitting for a while so i stood up to stretch for a bit and a minute later my left knee bucked over to the left side, i almost fell but caught myself on the the counter . Fortunately it went back into place seconds later by standing up straight aging…OMG the pain!!! This is the same knee witgh a bone contusion from a couple months ago so im still healing from that… I started a flare almost 2 weeks ago and I always have some sort of severe orthopedic/cartilage involvement so this was the icing on the big fat flare cake! My xray showed premature arthritis and bones that my dr said shouldn’t be long to a thin,young woman there’s zero cartilage on the left side but we already knew that. .definitely happy there’s no fractures or breaks. What is happening is now my knee cap is unstable and with no buffer(cartilage)it’s just gonna dislocate when ever yaaaay! Fortunately my dr confirmed only a partial dislocation … I just can’t believe my diseases have evolved into this craziness… so as of now my left shoulder and knee cap are spontaneously dislocating and I can’t even imagine what appendage will be next !!! It’s really hard to not have anzity over this but I’m literally doing nothing to invoke all my orthopedic injuries:( the 2 times my shoulder partially dislocated i was waking up from a good nights sleep , rolled over and WOOPS there goes my shoulder in the opposite direction! The worst part is that I’m not healthy enough for any corrective surgeries so I just have to make due with rest, ice, compression, ant inflammatory and serious pain meds… The cytoxin is definitely helping my lung disease and even though my latest flare put me ten steps back I still feel this treatment put me a couple steps stable… i just hope and pray something wil slow the destruction of my joints and bones… seriously this situation is so painful and crazy I wouldn’t wish it on my worst enemy! Going for a new CT of my lungs and pulmonary function test next Monday then to my lung dr Thursday to go over the tests. I’ll let you know how it goes!!!
Hi Ann A:)
I have a brace or neoprene sleeve for every appendage lol! I sleep with one on my shoulder every night and I definitely feel it the next day when I forget to wear it… I do ha have a good patella stabilizing brace for my knee or sometimes I wrap it well with a sturdy ace bandage and ice pack inside. I live in south Florida and it gets super hot so sometimes wearing mutiple braces is cumbersome:/why did you have to have 3 knee replacements???that sounds so painful!
Wow that must have been disappointing to go through:/ guess im glad my drs have the for site to see
Me having defiant complications from an ortho surgery, so sorry you had to go though all that! Thanks for the link… I have another appointment with my rheumatologist on the 27th so maybe she can just write a percription for a brace then.
Xo
dawncelest, I just came across this discussion a year later. Have you been evaluated for Ehlers-Danlos? The type of dislocations you describe are typical for EDS patients. Also, I noticed your daughter is an aerialist and presumably hypermobile, another trait of some types of EDS. Anyway, just something to ask your doctor about. Best wishes!
Hi dancermom 
i absolutely don’t have hypmobility…it actually became a big joke regarding this between my orthopedic dr at i from when i went to Hopkins last year. The rhuemy there was so amazed that i was most comfortable sitting in kida a pretzel position and the i was flexible even with labrual tears and my cartilage disappearing at rapid speed in my hips. I just work supper hard at keeping range of motion even though it’s really hurts because nothing makes me more down than being in my wheelchair for long periods of time. So when i saw my orthopedic for the first time after Hopkins he read her notes to me and said shes implying i have EDS… he ask if i could easily touch my thumb back to my wrist and there was something else I can’t and he smiled and said aboabsolutely no EDS. Since this original post I’ve gotten soooo much worse:/ firmly diagnosed with relapsing polycondritus (that’s why all the cartilage is going ),osteoporosis and Wegener’s vasculits. last partial dislocation was 5/14 in my right shoulder with a small separation in my cloar bone.i rolled onover in my sleep and out it went. I knew i was going into a bad flare severe days earlier. Was hospitalized at this time, turns out i was several animic ,my platelets were totally stuck together,all my cardiolipin antibodies,crp and erc were super high. . So i definitely have few serious disease but EDS not one of them:)
Thanks for the update; I appreciate the information. Hopkins is one of the top centers in the country for EDS, so if they ruled it out, then definitely case closed. I hope the anemia is well controlled soon and that you feel better, dawncelest.
Gosh sorry for all the typos lol