Does anyone else have trouble with finger /hand or toe/foot bone dislocations or subluxations?
I keep getting a dislocation of a couple of metatarsals. Just got back from a GP apt (not my own named GP), who agreed it looked as if it had dislocated again and just says wear supportive shoes for a few weeks until it settles, but it keeps happening. He seems reluctant to refer me at the moment.
It seems to happen more when my joints are inflamed in general (I've just finished a pulse of high dose steroids for that) and wondered if it might be a lupus type problem?
Anyone with any experience of this who could share their views would be appreciated.
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Rubylu
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Do you have any other problems? Are you very "bendy" for example?
Frequent dislocations are typical of Ehrler's Danlos and it comes in varying degrees so if it is mild you may not have noticed much before the dislocations started.
I'm not sure I'd be happy if a particular bone kept dislocating and my GP just said "wear supportive shoes"! My daughter had a repeated problem with her knee dislocating - the more it happens the more the surrounding tissues are damaged. Her doctor's response was just "Physio..." - which was never going to sort the underlying problem - which even I could see on the x-ray!!!
Thanks for responding PMRpro. I've not had dislocations before, but this happened spontaneously a couple of months ago as I turned around. Problematic ever since... hmmm. I did have lots of tendonitis in the Petronius brevis area at the time, during a significant flare that involved foot, ankle, hand and wrist joints. A pulse of steroids has quietened, if not resolved the flare, in addition to hydroxochloroquine & AZ, but not had any impact on my poor old foot! I'm not usually bendy, quite the opposite!
I think if it pops out again I'll have to insist on an appropriate referral, as it gets really swollen every time.
I was wondering if this could be inflammatory related or a coincidental problem...seriously annoying whatever!
Well I guess the verdict is not to leave it too long if it's not resolving, without making more of a fuss.
WOW: I think you're onto something roman: of course, yes! when I get a subulaxation, the inevitable swelling IS inflammatory...and my lupus clinic tells us that our lupus IS attracted to any site of inflammatory process in the bod...no matter the cause. So, for sure lupus can be part of the swelling etc that comes with subulaxation. And if my lupus or SS are already flaring when a subulaxation happens, the swelling & pain do take longer to settle...of course an increase in daily pred helps 😉
Other types of hypermobility can predispose you to subluxations, but my version of this is due to vascular Ehlers Danlos so my joints & connective tissues are affected. Who knows, but I do think my Lupus meds do help a bit to damp down some of my EDS signs & symptoms, but mainly those related to vascular issues (e.g. Paroxysmal haematomas: mine are always worse when my lupus & sjogrens are flaring)
My hands, feet, wrists, ankles, spine & shoulders are especially affected. also my GI tract from mouth to a**. It's a hassle 🙄
Here are links to my 2 fav hypermobility & eds support group websites:
Bear in mind you're more likely to have straight forward joint hypermobility rather than Ehlers Danlos hypermobility...in march the official EDS diagnostic criteria changed internationally...so best to read the explanations on these 2 websites rather than go by my terminology 😏
I'm not into self diagnosis, don't worry! It's just useful and interesting to know about variations on a theme. It certainly broadens your empathy for others if not answer your own queries. It doesn't really sound like edh thank goodness.
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