September 27, 2013 at 10:20 pm #584victoriafaithParticipant
I was first diagnosed with Ehlers Danlos at 14 after a traumatic total knee dislocation, and continued to have knee dislocations every few years. My only other significant problem was a bad upper cervical spinal injury I sustained at 22. I had another knee dislocation this November which didn’t heal well, and then starting 3 months ago, it was literally as though my joints started falling apart en masse. I was having knee, hip, and back subluxations, to the point where I was unable to walk. I live in the UK and came to America for minimally invasive non-surgical procedures for ligaments that I had torn. They seemed to work well, but then about 3 weeks ago, the fragility started again, and this time all of my joints were affected, and at least one would subluxate basically whenever I moved, hundreds of times per day, with several dislocations every day. It felt like my joints had WD-40 squirted inside them- literally my bones were sliding past each other. At the time I was on high dosages of glucosamine and chondroitin, and on discontinuing them the dislocations/subluxations lessened, although a few of my joints seem to have gotten quite injured in the process.
My questions are:
1) How fast can Ehlers Danlos progress? I have the classical type. Has anyone else observed this sort of rapid, yet almost cyclical, progression?
2) Recently when my joints have acted up, I’ll run high fevers (on only one side of my body!), has anyone else seen this? My white count is normal, though I’m anemic.
3) Has anyone else experienced/heard of odd effects from gluocsamine/chondroitin in EDS patients?
Thanks so much for your time!! 🙂
VictoriaSeptember 30, 2013 at 8:10 pm #4460Lab-Scientist-LadyParticipant
Hi. I had the worst subluxation of my patella at 19. I progressed fast with more subluxations. I wound up with severe arthritis, degenerative joint disease, deformed legs, etc. I did every conservative treatment I could to by my self time, but I will say the last 9 years has been a down hill slide. I am now 37 with bilateral total knee replacements and I am disabled. I only found out this year that I had EDS. However, every person is different. Some are less affected by EDS than others. In my family of classical EDSers, I am the worst in the last two generations. I pray it stays that way. Shonda
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