By Geri on Sunday, October 29, 2000 - 04:42 am:

Hi, I'm 18 and I'm curious about EDS. i've been told by a friend that I may have it, but I don't have loose translucent skin and my tongue doesn't touch my nose, so I'm doubtful.
However my joints move very easily - I can make the bones in my hip joints go 'clunk' (sorry this is hard to describe), dislocate my shoulders and walk on the sides of my feet for a few examples. All of my joints crack and some seem to partially dislocate.
Can anyone help me here? I believed that I was just 'double-jointed'.

By Gwen on Sunday, October 29, 2000 - 11:25 am:

Geri, EDS isn't the only condition in which hypermobility occurs. Look up http://www.hypermobility.org which is the website for the Hyper Mobility Syndrome Association.
Also there are different varieties of EDS, not all of which manifest the skin disorders.
Many people can be 'double-jointed' without having Hypermobility Syndrome, which is the term employed when the hypermobility is accompanied by pain.
If you have pain with the hypermobility you may well have of the many syndromes. Either a rheumatologist or a geneticist would be the best person to see in this regard.
Even if you are only "normally" hypermobile it isn't a good idea to do party-tricks and put extra strain on these joints. Most of us who have recognised conditions have probably performed our reprtoires in the past to entertain and are now paying for it.
Good Luck

By Lin on Wednesday, November 01, 2000 - 07:16 pm:

eh, i always twist my arm all the way around, and overextend my elbow in the wrong direction for people... not to mention my thumb flat against my wrist and arm, and my fingers bending the wrong way.... what do you mean by paying for this? how bad will it be? i am 15 right now, and people are sickened yet interested in my strange movements.. my ligaments in my legs are VERy loose, i tend to fall when walking, my knee or ankle will go out, i will fall to the side but quickly step forward with the other leg to compensate and catch my balance, i have learned to do this without notice, as it occurs frequently every day.

By Gwen on Thursday, November 02, 2000 - 04:47 pm:

By paying for it, I mean that joints that are stressed, either by injury or by being rotated/stretched beyond their normal capacity are more prone to become arthritic because of damage. Hypermobility in itself isn't supposed to cause arthritis but it's all the little injuries (and not so little ones) that damage the joint capsules and cause ossification within the joint.

By MichelleT on Thursday, November 02, 2000 - 08:02 pm:

Lin, I used to do all of the party tricks, including throwing my right leg behind my head. It was funny, but now I have to wear a hip brace to keep that joint in place. I believe my "tricks" made it weaker by stretching it out too much. I am now 32 and can't run anymore.

By Geri on Friday, November 03, 2000 - 12:05 pm:

Hi again everyone, thanks for all your responses -I'm still slightly confused here. From what I can tell, I don't fit into the catagory of 'normal' (because of all the partial dislocations/ movements etc.) but also not in 'hypermobile' because I don't get any joint pain (apart from if I partially dislocate something a bit too far by accident, then its a sudden pain but doesn't really last).

I wanted to ask two things here - firstly, is it possible to have v. loose joints but tight muscles? and secondly if I did stretching exercises (for dancing purposes) do you suppose that I'd start to get really 'bad' and obvious dislocations like Lin and Michelle? Or might it work to strengthen them?

Everyone's thoughts much appreciated . . .

By Lin on Saturday, November 04, 2000 - 12:49 pm:

yes it is possible, the joints are being held in place by ligaments, which connect bone to bone, so muscles dont have as much to do with it, i have very strong muscles and constantly have things slip in and out of place, i feel them slide out and right back in. after exercise, my joints are realy loose, like if i am doing alot of free hand writing even, for example, when i am done and the muscles in my hand are loose, i can slide my fingers in and out of place. some exercises to strengthen muscles are said to help from getting dislocations, but i wouldnt know them, ask a physical therapist that is familiar with hms. i get the same pain as you, no pain usualy, unless something slips a bit to far, then i feel it temporarily, like OUCH and then, oh wait, what was i complaining about? the pain is so fast and gone it isnt bothersome. i danced in ballet lessons for 5 years when i was little, never had much problem with things popping out exept it did make me much more flexible, but i dont know if that has anything do to with my problems now.

By lesley on Sunday, November 05, 2000 - 02:50 am:

If you are able to strengthen your muscles it will help to protect your joints. They will partially do the job that your ligaments are unable to do properly.

By rachel on Tuesday, November 14, 2000 - 05:40 am:

Geri,
I have pain with this now, and didn't when I was your age. I never had any problems with stiff and sore joints and muscles till about 7 years ago. I am now 33 yrs. Prior to that I just thought I was very flexible, and also did party tricks for fun (when I was a kid I could place both ankles behind my neck, not a good look on a 33 yr old LOL, lucky I can't do it any more, to sore)
You can be hypermobile with stiff muscles, as the unnatural twist of your joints mean that unusual stress is placed on particular muscles, then those tight muscles pull everything out of wack as the joints are so loose. Stretching can be a good thing, as long as you are not stretching the joints in a hypermobile way, as in yoga. I am now seeing a physiotherapist, may be worth your while to see one also, but ask to make sure that they are very knowlegeable in HMS.
Hope this helps
Rachel

By Geri on Tuesday, November 14, 2000 - 11:09 am:

Hi Rachel
I definately agree with you about joints being easily twisted around - I find that mine rotate easily (like shoulders etc.) but don't bend right back so easily (i.e. like the little finger test where you bend your finger well beyond 90 degrees). Mine goes not much beyond 90 BUT I can twist it with no difficulty.
I also thought that HMS was something you either had or didn't have - but it develops then? So your joints can become even looser as you get older? Yikes, thats scary. I can understand why everyone now advises not to do the weird things with the joints ... but it is tempting when you're young - especially for the reaction of friends etc.

By stiff/tight muscles I was kind of thinking of the splits for an example. In theory (as my hip joint is quite flexible - it goes 'klunk' if I kick a bit high or turn around too quickly and the bone partially dislocates). I should be able to go way beyond the splits with no stretch sensation, but I do feel a definate stretch slightly beyond. I just thought that this didn't really follow.

Oh yes thanks for your other reply Rachel, I think I'll take your advice and ask my doctor his opinion about the bone (or a physio) When I see it, it makes me shudder! I just want to push it back to normal!

Take care everyone
Geri