By kath on Tuesday, January 02, 2001 - 08:36 am:

I came across websites dealing with hypermobility syndrome when doing research in relation to my shoulder injury. I am now wondering if I should be looking into the possibility that I might suffer from hypermobility syndrome.

I was recently diagnosed as suffering from rotator cuff impingement syndrome, after swimming heavily over a period of two months. Apparently I am vulnerable to this problem for a number of reasons including the fact that I have extremely hypermobile shoulders.

I have had symptoms of hypermobility all of my life. Since I was a young child, both of my shoulders will partially dislocate if I tug on them, swing my arms, carry a bag of groceries, etc., without tensing the shoulder muscles. Other parts of my body are also extremely flexible. I am in my late 30's and can still put both feet behind my head and do splits in all directions even with no flexibility training.

In terms of medical/surgical history, I have had two inguinal hernias and surgery to repair a prolapsed bladder. I also have a mild case of mitral valve prolapse. I have relatively mild osteoarthritis (in two finger joints only). I am also starting to experience some pain in my knees.

Should I seek medical advice respecting hypermobility syndrome? What type of specialist do you see for this problem? How do you find one familiar with the syndrome. Is there really anything that can be done in terms of treatment even in the event of a definitive diagnosis?

I am particularly concerned that this will pose ongoing problems in terms of my ability to participate in sporting activities (particularly swimming).

Answers to the above questions and any other suggestions would be welcome.

By Gwen on Tuesday, January 02, 2001 - 01:52 pm:

It can be very difficult to find a specialist with enough knowledge of EDS/HMS to really be of use. Many have only a vague idea of what it is and often an erroneous one at that! Rheumatologists and genetecists are often useful resourses. Have you checked out the websites for the various Ehlers-Danlos Syndrome organisations? Given your mitral valve problems you may find that you have EDS.Do you have a familiy history of hypermobility? That is often a clue as it may be hereditary.
As to treatment. It seems to be a case of different strokes for different folks. Massage, heat and rest suit some, others swear by prolotherapy, others by dietary supplements. Some people find exercise and body building helps, others that they exacerbate their symptoms. Strapping often seems to help. Really it is a case of trial and error but what seems certain is that the underlying hypermobility never vanishes, all that is being treated is the symptoms.
Whereabouts are you? You may well find there is a support group in your district. Good Luck

By Robbie on Monday, February 19, 2001 - 10:38 pm:

I think I have HMS. I am extremely flexible even though I am 100 pounds overweight I can touch my head to my knees, touch my hands behind my back, etc. I have a couple of questions. My knees are not that hypermobile, however every once in a while while sitting on my knees (on my "haunches") my left knee seems to dislocate and I have to throw my leg out straight to get it back into place and then I have pain for a few days like I have stretched or torn stuff around the knee. Is it possible that my knee or kneecap is dislocating?
My second question is this - I stretch a lot because it feels good, but will this later cause me pain or arthritis? I am starting to have a little pain in my right hip and am wondering if the extreme stretching is the cause.
Any help is appreciated.
Robbie

By Patrina on Thursday, February 22, 2001 - 02:36 pm:

Robbie,

Yes, you're probably having either a dislocation (also called 'luxation' - that's the medical term) or a partial dislocation (subluxation) with that knee. That's one of the problems I've had the longest (since I was about 7), along with my shoulders. I'm in my 40s.
Take care. Patrina

By Patrina on Thursday, February 22, 2001 - 02:38 pm:

Oops. I forgot. Stretching is good, but don't stretch beyond what's considered 'normal.' Someone else can probably tell you better; I'm on a pain med that has my brain rather fuzzy!