By Silvia on Friday, June 15, 2001 - 01:27 pm:

Hi,

Does anyone out there have hypermobility throughout the body? I've been reading that people who have it tend to have it in one or just a few joints. Anyway, I'm 29 and a couple of months ago I started experiencing chronic pain in my low back and right leg. Eventually it spread to include my whole back, neck, shoulders, right knee and foot. I've been told I have hypermobility syndrome. Please respond if any of you have experienced this. I also started Prolotherapy and found some relief after my first session. By the way, I've also been told I have Barre-lieou syndrome, which causes strange symptoms (clicking sound in ears, facial twitches, etc.) Does anyone else have this due to hypermobility?
Any input will be appreciated :-)

By Mickey on Saturday, June 16, 2001 - 02:50 am:

Hi Silvia,
Never even heard of Barre-lieou syndrome so I can't help there. But I do have widespread hms myself. I have it in my fingers, necks, shoulders, elbows, spine, hips, knees and toes!! I was lucky and saw a doctor (long since retired) who diagnosed hms when I was 15 years old. I am now 33 and recently I have got a coupel of serious complications due to hms (to do with walking), but a lot of us here understand, so you are not alone. Take heart and continue to be strong, you will make it.
Take care
Mickey

By Silvia on Saturday, June 16, 2001 - 04:19 pm:

Thanks Mickey,

Did the doctor you saw when you were 15 give you any advice as to what you should do to prevent future complications due to hypermobility. The reason I ask is that I used to exercise and go bike riding a lot and sometimes I wonder if this is the reason why I'm in so much pain now. I just wonder if all that exercise aggravated my ligaments.

Thanks,
Silvia

By Mei on Sunday, June 17, 2001 - 12:43 am:

Hi Silvia,

Good news, well, sort of, you have come to the right place. Browsing through this board you will see that most of us (if not all) have hypermobility in our whole body. So, in a way, every story, every suggestion, every advice on this board could be of use to you. When I first came to the board I searched it for days to find every subject that concerns me. (use the keyword search, topics usually evolve during the discussion, or just skim through everything, it is worth the effort). Now I just come here like once a week and check last weeks messages. There is no short answer to the question 'What should I do with my hypermobility'. But this board can give you answers from other hypermobile people on different topics. So to start with you question above, I do find that exercise makes me worse but I also know you need to maintain your muscles etc. I have been told to find a way to exercise but not overuse joints. That is not easy and I am still trying and learning everyday. The best advice I can give you is to listen to your body. And as I said to read the board. Good luck!

By Mickey on Sunday, June 17, 2001 - 10:26 am:

Hi,

I have found that the best type of exercies is swimming. This allows the muscles to be used whilst the water supports them, thus helping to prevent injury or over exertion. I hope that this helps.

Mickey

By Joseph Renken on Monday, June 18, 2001 - 02:26 pm:

I have been under pt for almost a month and it hasn't helped my chronic hip pain associated with hms. My orthopedic surgeon told me that practically EVERY joint in my body was hyperextensible. Fingers, toes, wrist, elbows, ankles, hips, shoulders, and even my jaw for goodness sake. Does anyone know how embarrassing it is to kiss your significant other and all the sudden your jaw clicks loudly?...Luckily we have made a joke out of it...

Joe

By MichelleT on Monday, June 18, 2001 - 06:22 pm:

Joseph, I hope you get some relief from your hms problems. PT never helped me, unless I enjoyed giving away my money. I ended up wearing a hip brace for a year, and that too began to hurt me more than help. So now I am back where I started-nowhere. The last sports medicine doctor I went to basically gave me a blank look for an answer to my hms. He could only offer me stronger drugs to help with the pain. I told him no thanks. I'd rather not get into painkillers yet. I am wary of the side-effects.

I too used to be a marathon runner. But now, even going for a walk causes me pain for days afterward. I need to exercise, because I have put on 10 lbs since I was forced to stop running last year, and it's very discouraging. Weightlifting and waterjogging are two activities that I think I can do, but after a year of inactivity, it's hard to get myself motivated again.

Keep searching. Don't give up.

By Sharon on Monday, June 18, 2001 - 07:21 pm:

Silvia,
I have hypermobility in Toes, Feet, ankles, knees, hips, pelvis, spine, neck, shoulders, wrists and jaw.
Sharon

By Gwen on Tuesday, June 19, 2001 - 04:58 pm:

Ditto to what Sharon said and add elbows,
sterno-costal, sterno-clavicular and spino-costal
joints to that list.

By Sharon on Wednesday, June 20, 2001 - 03:24 am:

Gwen
I forgot ribs and related joints and have had a dislocated pelvis since I was 12 which is still out to this day (I am 30)
Know how you feel
Sharon