mumanddad wrote:I don't really know which part of the forum to start to ask for help really, so I'm going to put this post on a couple, hope that's ok.
mumanddad wrote: Does anyone have any ideas...which part of the forum to ask for help, any history of similar problems, recommendations for pain relief/treatment, specialists in North West England?
Unfortunately this is very common for us with EDS3/HMS, it doesn't mean that there is nothing going on!nothing showed up on x-rays or MRIs.
Um.... it can be hard to know exactly what is going on, as a joint ca sublux and return into place straight away. If she is gettig sudden pain, the joint is collapsing and she is having to go to A&E for the joint to be relocated it certainly sounds like a sublux or dislocation to me! Has someone told you that hips can't dislocate? This is a common urban myth that we come across fairly often!They don't dislocate or sublux
This is certainly something that can happen with HMS, both the band flipping or 'snapping' and the body using incorrect muscles. When ligaments become too stretched to stabilise a joint, the muscles have to try to take this over, and sometimes muscles that should me moving the joint try to stabilise it, and other muscles have to be roped in to move the joint. This is a bit basic but gives the general idea of what can happen.We've recently seen a physio who suggests it could be the Illiotibial band flipping. Physio seems to be the only answer to this too! She also said that her brain doesn't seem to be telling the correct muscles to move.
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