Sublaxing/dislocating joints.

[Springsong]

In the past I was very naive over sublaxation & dislocation of joints thinking that it would only happen in cases of extreme injury, boy was I wrong [sighs].

My first instance of dislocation occured around my teens, I was swimming & the water temperature gave me cramp (which may have been down to my more recently confirmed Raynauds), next thing I know I'm looking at my foot & my big toe is bent at right angles & I'm having to gently massage my foot to coax it back into place [Eeek!!!]. Well this used to happen on rare occasions from here on, I'd get cold or sit awkwardly & next thing I know there it would go again [rolls eyes].

More recently however, it's now not so much my feet but my hands that are suffering. I don't even really know why [sighs], I'll be fine one moment & the next my little fingers are bent & locked in awkward, painful positions before I coax them back into place [Ouch!!!]. It is happening on an ever increasing basis making it sometimes awkward & painful trying to eat, hold my children, drive our car or perform other simple tasks :'(.

The added frustration comes when the Dr/GP simply states 'That's part of your EDSH/HMS' & that's that, we're expected to deal/manage with it :(. I don't know what I'd expect instead - medications, more physiotherapy, corrective operations?....[sighs]. It would just be nice sometimes to hear 'Oh yes, I can help you with that' rather than 'You'll have to learn to deal with it'. Ok, rant over, time I grab a cuppa

[ClassicalGirl Administrator]

You are not alone, Springsong. Pretty much all of my injuries have come from very non-eventful events e.g. I dislocated my shoulder by taking off my jumper. My collar bone also pops out whenever it feels like it. I unfortunately can't offer you any help, but I do share your pain.

[missteal]

You can get support gloves for hands, I'm looking into it at the moment after starting a new job doing up furniture. Tubigrips don't really have enough support there. It might be worth contacting an occupational therapist near you, they come and do an assessment and give you ideas of what to get to help you. I now have a trolley for moving things around the house, a toilet frame, hand rails everywhere and it was all free. They don't generally do the smaller things but they can advise on what would work for you personally.....you can self refer yourself or get your gp to refer you xx

[anniequk]

Totally understand this its as if they are shrugging there shoulders at us we need more training fr this horrible disorder x

[daylyn]

I am forever beig told to build up the muscles around the joints and I won't have many problems after that...I still have prolems. Once you start building up the muscles around the joints, you have to KEEP doing it becuase the muscles are lax and will lose the strength faster than a *normal* person. Here where I am, no one knows hardly anything about EDS and thinks that pains experienced are ghost pains. I have issues with hands shoulders, knees, ankles, feet, neck, and back. I am in a lot of pain much of the time and can't work because of my back issues. If I go for some sort of assistance, they wouldn't give my hardly anything becuase they go off of what the family makes as a whole and at $60,000 a year...with a son that has disabilities and myself...we apparently make too much money. After docs and medications for me and my son...bills and housing gets paid. Not much living.

I wish you luck.

Dana

[Gingerbrit]

I've just been diagnosed with joint hyper mobility syndrome in most if not all my joints after years of chronic pain, I can't believe the only advice I got was to try live the most normal life that I could and take pain killers!