By kati on Tuesday, April 23, 2002 - 10:04 pm:

hey everyone

for about a week now my left knee has been unstable esp when my left foot hits the ground at first it would just hyperextend back as soon as weight was on it and if i tried to stop it it would go forward like i wsa bending it in the past few days it has been giving way (forward) and it also goes in towards my other knee it doesn't hurt anymore that it did before but it is really annyoying. doesnt cause me to fall down but makes me stumble. is also making my arch hurt and if i walk on it too much it feels like a lig on the outside bottom is being pulled. going to doc in the morning (i actully got appt !!! so happy) but all she is going to do is send me to someone else just have to see her to make system work. lol. i read about someone else who had this problem but i cant find the letter anywhere on this site. if anyone has any info on why this is happening please respond or if they know where the letter is let me know. its so wonderful to have a huge site but hard to find specific letters sometimes. thanks for any hlep. got to go.

Kati

By Anita on Thursday, April 25, 2002 - 10:37 am:

Kati

You're definitely not the only one! Monday night I hyper-extended my right knee kick-boxing (I know, I should know better than to be kick-boxing but everyone needs a hobby!) and I've discovered the opposite problem to yours - it doesn't collapse under me, but it hurts like hell! The pain is now running in either direction from my knee, causing my hip to seize and me to almost faint with the agony. Plus I need to register with a doctor before I can see one.
I do, however, know why it happened to me! I have been doing the same set of of physio exercises for the last ten years, or variations on at the local gym. Last week I didn't and it all fell apart. The excercises are simply ones specifically designed to work the area that supports the knee without working the thigh and calf muscles as when these get too strong they seem to pull things out for me.Don't know if you've been sent down this path before but any half decent sports physio should be able to suggest a few or try a gym instructor who's more sympathetic than the medical profession (not hard I know) but this has kept me free from all the various injections that are offered to treat my symptoms (they never offer to treat the cause!!!).

By Sheena on Thursday, April 25, 2002 - 10:47 am:

Kati
My sympathy about your knee pains. Sorry to be boring, but could you describe the knee exercises you have been doing? My son has knee trouble, and has some exercises, plus he has to use tape to support his knees. It would be interesting to compare your exercises with his. (His dodgy hobby is tae-kwondo).
Hope you make a good recovery.

By Sheena on Thursday, April 25, 2002 - 12:46 pm:

Sorry, my last message should have been a query for Anita, not Kati.

By Margareth on Thursday, April 25, 2002 - 02:39 pm:

Even karate from a wheelchair doesn't keep your knees safe...
My left knee is messed-up pretty bad after I got punched in the kneecap last week by accident.
Well at least it wasn't me who dislocated a kneecap for a change, too bad it was still mine...
:-P

By Anita on Friday, April 26, 2002 - 02:49 pm:

Sheena
Most of my excercises are pretty straitforward. They simply involve lying on your back on a reasonably solid surface (excercise mat will do) and building up the following one leg at a time as 1, 1&2, 12&3 etc.
1) tighten the leg, particularly at the knee cap & hold for a count of ten, then relax.
2) tighten & lift a couple of inches from the floor (this also helps my abs!!!)
3) tighten, lift from the floor then to the side (outwards), hold for ten then bring in and relax.
4) tighten lift and make three small circles inwards.
5)as for four but outwards.

When you've done the above then lie on your side and tighten before lifting low middle then high then middle then low then high etc.

It's seriously boring and the first few weeks hurt like hell if I ever stop for a while, but considering that my diagnosis ten years ago went '...you've just got hyper-mobile joints, never related to any other conditions, don't worry about it (ie. don't waste my time)...' it's actually proven surprisingly good at keeping me going. Hip conditioner machines at the gym also help. I still rock climb (just not too well) mountain walk, ski (I used to guide for the British Ski Club for the Disabled, a great bunch) as well as kick-box. I'll admit to slowing down a little but the unsurprising lack of medical assistance in London means that until I discovered this site I had no idea that the pain I was in wasn't a figment of my imagination so I've tried to carry on as normal and just listened to my body as best I can. I have to use knee supports though as no-one's ever shown me how to tape my knee caps in place to stop them moving (although wiggling them used to make my sister sick!).

Hope that helps.

By Sheena on Friday, April 26, 2002 - 04:19 pm:

Thank you Anita, I will pass these on to my son. Might try them myself too!

By kati on Tuesday, April 30, 2002 - 10:33 pm:

hey everyone

thanks for all the good info. went to doc today but didnt find out much didn't knwo why knee was doing that. told me to walk on it as much as can (have been in a wheelchair past several days) walking on it messes up the rest of body esp back. knee gets much worse when i walk on it is starting to get very sore now. hope he knows what he is talking about.

kati

By Anita on Sunday, May 12, 2002 - 03:09 pm:

Kati
I hope your doc knows what he's talking about as well. My last injury left me taking someone else's prescription painkillers for two days when the surgery in my new area told me I had to register before they'd make me an appt. When I went to do that they told me I had to make a nurse's appt to register (not previously mentioned) and that I couldn't see a doc until 10th May (this was 29th April) so I went to A&E. There they told me to rest up the knee and wear a support from ankle to mid thigh (I looked my an OAP) until the whole thing was more stable, which is very diff. advice to what you've been told.
I'm significantly better now & making an official complaint about the receptionist who booted me out of the surgery in tears!
Just listen to you're body, it knows what it's talking about!!!

Take care

Anita

By Lin on Tuesday, June 11, 2002 - 11:36 am:

hey, I have chondromalacia patella in both knees. My left is a lot worse, and gives way a couple times daily. I have been through failed physical therapy and more. When it gets realy bad, i wear a knee brace and dont fully extend my knee when i walk, that cuts down on how often it gives way... sorry i cant help more, but i havent found a way to help myself yet!
Lin

By Sharon on Saturday, June 15, 2002 - 10:53 pm:

Like all of you I have knee trouble too. i have had my left knee ACL reconstructed not once but twice (stretched the 1st graft) and now last week while drying myself after a bath i bent my knee (left one again) up to dry my feet, not thinking i turned my knee/leg so that my foot was sort of crossed in front of my body and my knee sort of exploded, it went off like a gun (the noise that is)and haas been hurting like anything (I don't think it is my ACL again) but I think I may have blown either my medial or lateral ligaments. Not game enough to go to doc's. have been wearing my CTI2 (Motion) brace all day since (or I can't walk) and spend at least 1-4 hrs a day/night in my Zimmer splint (Straight leg brace). I know I have to go to the doc and get it checked out as it is very very painful and I can't straighten my leg properly except when the Zimmer splint does it for me. But how embarassing to have to tell do again that I hurt my self doing something so "Dumb" the 1st time I blew my ACl I sttod in a hole. I feel like such a klutz. I haven't been diagnosed with EDS and have had problems with geneticists as I have 2 different reports from 2 different geneticists, but they both say no stretchy/velvety skin no EDS but I know this isn't true. I am the dislocation/subluxation queen and doc's don't seem to know why (Last geneticist said I wasn't even hypermobile as my joints don't just "flop" back all the way the wrong way (ie if i lift my hands up they don't just flop overy backwards against my forearms).

By linda on Thursday, June 20, 2002 - 02:26 am:

Hey Sharon! you so obviously have EDS. your doctors are dopes. No one in the LA suport group for EDS has stretchy skin and all our joints dislocate. my skin barely stretches eithe and the geneticist here in LA is the reknown expert and he wrote i have EDS. tHE FUTURO thermal support brace has done miracle on my knees. as it has medial and lateal ligament side supports and fits snugly to the skin. it is the only brace that has gotten my knees to stop dislocating. I'm stocking up. they are less than 10 bucks and a total godsend. better than my $1900 knee braces. I hope everyone tries it.its weird to have my knees FINALLY stop dislocating After all these years. i had resolved to believe they were beyond help!

By Sharon on Thursday, June 20, 2002 - 03:43 am:

Thanx Linda,
I too am pretty sure that i have EDS 3 but will live without a diagnosis. i have just found out (taday) that my doc (GP) thinks I have torn my ACL for the 3rd time (I have had it reconstructed twice beofre in 1994 and 1998) Just what I needed HA!. I am in an immobiliser again at the moment until i can get another appointment with my orthopaedic surgeon. I am hoping that having my knee reconstructed every 4 years is not going to become a habit LOL. I too have numerous knee and other braces (if fact if i wore them all at once I would look like a crash test dummy ) I don't know if they can reconstruct my knee again as they have harvested all the grafts out of my left knee that they can. I truly hope that it is another ligament I have blown and not my ACL. IS TEaring/blowing/ stretching ligaments part of EDS or just part of me ???? I wish I could find an EDS support group here in Canberra Australia as then others who have this condition could help me to know what to do or where to go to get a diagnosis and treatment etc. It is so expensive having this disordor as braces aren't cheap, my last knee brace cost me $1500 and I am on workers compensation ! AHHHHH
Anyway thanx for the posting back it really does help to know others understand and think I too have EDS. Bye the way I think my brother and sister may have some of the skin side of it my brother has a small surgery scar on his chest with in now like 2-3 cm (1 inch plus) wide and my sister has stretch marks so deep it looks like she has had major abdominal surgery (she has had 5 kid a couple who were 2-4 weeks early) and my mum was flexible up until she died last month, and my grandmother has diverticulitis and me and my mum (at least) have Trivial mitral valve regurgitation and increased peak flow acroos the aorta (Almost identical).
Feel free to email me as it is nice to have someone to talk to who understands.

By linda on Thursday, June 20, 2002 - 10:40 am:

I am not surprised that you keep tearing your ligaments. my pt would say surgery is not the way to go as your connective tissue/ligaments have no value as even when u do a repair it would stretch again, thus your numerous surgeries. ask your doc if the next time u repair it you use some material like gortex which does not stretch.tats what my genius pt suggested.i dont know if it has been put into practice but sounds cool. definitely try some MCconnell taping as well as it acts like ligament. i started taping in a U SHAPE 3 months ago and i feel like i have a new knee!!!!

By Sharon on Thursday, June 20, 2002 - 04:33 pm:

Linda,
I cannot tape as I am allergic to ALL strapping tapes (even the hypoallergenic ones) and my skin breaks open an weaps and become a right onld mess in less than a day. So that is why I tend to rely on bracing as taping is definately OUT.
I have to wait until 9th Sept to see my OS. (WOW long time)

By James on Wednesday, March 31, 2004 - 07:01 pm:

(1) I’m 22, male, and was recently diagnosed with BJHS (also possible FMS and/or CFS). Except for doublejointed fingers that I’ve always had, and TMJ that began 4 years ago, I have never been hypermobile or hyperlax at all until last year when in a 5 month period both knees suddenly became very loose, bowing to sides and back, and both feet went flat. Has anyone else experienced anything like this?
(2) Physicians are claiming it is genetic. How can this be if the hyperlaxity just happened? All the literature I can find on BHJS talks of patients with life-long hypermobility and or hyperlaxity who suddenly develop pain, but no mention of patients who develop pain first, followed by hyperlaxity and hypermobility. What other causes are there aside from genetics?
(3) Where do I find documentation to support this?