Joint hypermobility disorders :
Where did all the odd bods go? - - Posted by Stacey (Stacey), 15 July 2003
Wow we havent had a post since june 25th (or 26th cant remember now that i started typing). How is everyone doing? I know we are all having busy summers and a few of us are goign through some hard times but this board is so empty right now. Come on guys we have to stick together!!
Posted by rhea (rhea), 15 July 2003
I KNOW!!! I keep checking in waiting for a new topic to start. LoL well hopefully this will start things rolling.
I hope everyone is well!
Posted by Shazinoz (Shazinoz), 15 July 2003
I'm still here.
I have about 1/2 of my rib cage out at the moment.
My foot is still not well.
My knee is stuffed and my hip still hasn't settled down
Add to this my sinus etc infection of about 12 weeks or so .
an i am having a "FUN" time. NOT
I too keep a check on tis area ALL the time.
Posted by rhea (rhea), 15 July 2003
I'm so sorry that you are not any better at all since the last time we chatted. What is the next step with your sinus infection? They are miserable, painful, things. I can't imagine how awful it'd be to have one for 12 whole weeks!!! I take it then your poor foot is still in its ski boot on steriods brace? I was hoping you'd be able to loose it by now. I'm also sorry to hear part of your rib cage is out and that your knee and hip are being such problems for you!
PS/ is your email up and running again? Did you get my message about secret pal?
Posted by Stacey (Stacey), 15 July 2003
Glad to hear you are doing well I too noticed that my hyperextensiveness (wow is that even a word??) came back quicker than the rest of my ROM, but also at that time i wasnt diagnosed or have any info about HMS and my PT was ussing the hyperextensive part as part of my ROM telling me that to work with it and get it back!! I also have never had problems getting ROM back even afte rmy last fairly major surgery my PT was amazed how quickly I recoverd from it.
So sorry to hear your not doign to well. I can realte to hte sinus infection thing, I have been fighting one since hte beginning of may and have been on 3 different antibiotics (one for 3 months), It had kind of went away until i woke up this mornign feeling horrible and have had to take the day off work combingin it with the horrible pain i my knees and ankle. Anyways enough about me. Hope your foot and ribs, knee and hip all settle down asap!
Thinking about all of our hypermobile people all the time since you all have helped me so much either directly or indirectly that i woudl be where i was in my health knowledge if it wasnt for you! Thank you all so much!
Posted by SL99 (SL99), 16 July 2003
I'm still around and still as bendy as ever too! Sorry I haven't posted much here lately, but been a bit tied up with guests and medical battles etc. But rest assured I'm still part of the Odd Bod gang!
Stacey - I'm sorry to hear you're still having trouble with your joints especially your ankle. I'll be keeping my fingers crossed that you'll get some relief soon and that the doctors will take you seriously.
M - I'm glad your surgery finally got done and that it seems to have gone well. Take care and I'll be keeping my finger crossed for you!
Rhea - I'm still so proud of the way you are dealing with everything and sod determined to make the most of things. You're real star and inspiration to us all Sweetie.
Shaz - I'm sorry you are still having such a tough time with your Odd Bod. I really hope that you get a break soon and will start to get over your infection and get relief from your other pain too. You're in my thoughts and prayers darl and I'm always around if you need me....That goes for everyone!
As for me...well, I've had my connective tissue disorder finally confirmed by my geneticist ( no escape now then!) and I'm currently waiting to see a Rhuemy and the pain clinic to see if I can get my excessive pain under some sort of control. It's been a pretty tough ride the past few months with my body throwing regular tantrums which leave me completely floored and crying with the pain...plus all the stress of recent developments too. As you know having my "guest" and hearing such devastating news about my legs has only added to the trauma too, so all in all it's been a bit grotty!
I'm also having more trouble with my left shoulder, having dislocated badly again about 3 weeks ago leading to the inevitable OS referral. I have to endure the customary 3 months physio which they don't expect to work...then the top shoulder surgeon ( my original mad OS) will consider trying to stabilise it surgically, although I have been warned that it's doubtful it will work and even if it does it might not be for long due to my condition and complications - charming. The trouble is I'm stuck between a rock and a hard place because my legs are deteriorating fast and I'm going to need to either use both of my crutches or a wheelchair very soon...both things I can't do with stuffed up shoulder. So it looks like I may be forced to let them try surgery.
Oh the joys of being a freak of nature!
Take care my fellow odd bod friends and I promise to try and stay more involved on here now that I have a bit more time again. Thinking of you all and always here for you.
Love and painfree hugs.....Jo
Posted by Liz (Liz), 1 August 2003
I'm still here, although I've been so busy with wedding planning that I haven't had much time to do anything! (Wedding is on Sept. 20th) I've checked in on the boards once in a while, but the posts seemed to be messed up so I didn't post anything. Been having a pretty good summer pain-wise, although normally my pain is concentrated in my left knee, it seems to have started intermittantly in my right knee as well. That doesn't make me a happy camper, but I continue to exercise my legs and try to make the best of it. Also been trying to do some jogging, but my knees and ankles hurt so bad afterwards from the loose joints that it seems that's a lost cause. Will endeavor to persevere though!
Updated Thu Apr 29 2010