By Idance 4Him on Monday, December 08, 2003 - 04:40 pm:

My daughter has been been hypermobile her whole life but was diagnosed a few years ago. She is now 14 but her hypermobility has disabled her from some of the activities that her other teen friends do. The hypermobility is caused because her tendons are about 1/3x larger than they should be and she is able to dislocate certain joints voluntarily.

We were directed towards an orthopedic surgeon and he recommended physical therapy. However, this did not prove helpful.
(Lauren has to constantly stretch to keep her tendons loosened and she would tear and weaken the muscles that she was toning.)

Lauren is an irish dancer and practices constantly. She was forced to give up karate, however, when the grappling started affecting her joints and imparing her. (As well as teen sports such as bowling, swimming, tennis, etc.)

We would like to know if any others here have sons or daughter with this problem and what therapy(ies) or strenthening methods have proven sucessful.

Please advise!~

By Michelle Castle on Wednesday, December 10, 2003 - 02:59 am:

Hi, I don't have teens with HMS, but since I just turned 23 this week, I thought you might find my experience interesting.

What's worked for me was surgery on my ankle and strengthening my quads to relieve knee pain. The surgery was back in December 98 right after my 18th birthday. I had been turning the ankle when walking following some severe sprains; after the operation, I was able to return to sports like basketball, touch football, volleyball, and softball, playing on intermurral collegiate teams until I developed alot of joint problems in 2001. It was shortly thereafter that I was diagnosed with HMS. Doing sqats for my knees, as well as having orthodics made to correct my flat feet, has allowed me to get back to being able to walk long enough to shop a bit here and there, although I can't do it for too long and have to be vigilant with the exercise.

The problems with my hands haven't responded well to treatment. Phsysical therapy over the past two years just hasn't done much. And the weird body mechanics I developed have led to serious problems throughout my shoulders and upper back, which hasn't responded to exercise either. I had surgery on my left hand back in October with the hope it'd have a ripple effect throughout my shoulder region, but to date, I haven't recovered enough motion to know if it worked.

I haven't had any success with pain meds. My doctors have tried around a dozen different anti-inflammatories, but they don't help at all; nither did ultram, with is stronger than tylenol. I'm currently supposed to be trying Relafen again, but I'm really not taking it since a 30 day supply is $45 on my insurance and I don't want to waste that much money again. I'm thinking about asking my primary physician about a low dose anti-depressant, as lots of HMS and chronic people say it does more for them. Because of my age, I can't get anything stronger like narcotics.

I don't mean to scare you, but I'm pretty limited because of my hms pain. I can't work and had to but college on hold. I can usually stand to sit, converse, and play games with friends, but can't play sports or even shop leisurely with them. I spend a lot of time at home, alone, watching tv or something else that's passive. I'm eligible for Social Security because my father died when I was young, and have a claim pending. I'm considered a disabled dependent on my mom's hmo. The hope is that I'll either "out-grow" it, overcome it through surgeries and exercise, or learn to manage it better and be able to return to a nearly normal life. But I don't think my experience is common for such young people with HMS.

My only advice to you is to read everything you can about hypermobility syndrome, hypermobile ehlers-danlos syndrome, joint laxity, chronic tendon injuries, and the like. The best places to start are hypermobility.org and ednf.org. The forums here are good for ancedotal looks at hypermobility; those two sites also have good articles, faqs, treatment reccomendations, and so forth. If you run out of helpful links after looking at those sites, I routinely post related links to my site, hypermobility.blogspot.com.

Lastly, if Irish dancing places a lot of strain on joints at the end of the range of motion, most experts wouldn't reccomend your daughter particapate in that if she's having pain and other symptoms. Swimming, on the other hand, is often reccomended for treatment, and would likely be a better choice, if she could be convinced to change.

Michelle

By Idance 4Him on Saturday, December 13, 2003 - 07:43 pm:

Thanks You for sharing! Ü Have a wonderful holiday!