collapsing legs

[zed]

Hi, i'm suprised to hear that most of you only suffer from this some of the time (not that i'd wish it on anyone)
This is one of my most long standing and problematic problems with HMS. My legs give way several times a day, i'm very unstable and my knees will go in any direction causing all sorts of probs depending on what i'd doing at the time. The scariest moment i've ever had was carrying my daughter who was about 18 months old out of the car to the front door (she was asleep so she was over my shoulder) when both knees went as i turned the corner, i fell so heavily i ripped my jeans and cut my knees, how i reacted quick enough to cradle her head before touching the ground i will never know!
When i got in i was shaking like a leaf, covered in blood on my legs elbows and the back of my hand which was holding my daughters head was covered too. I lied her on the sofa and just cried at what could have happened, all that and she was still asleep! I still have nightmares about that day but i never carry my kids now without holding on to something very secure!
I was told this would improve by the time i reached my 30's as joints naturally stiffen with age...i'm now 35 and worse than ever, my hips and ankles give way as well as my knees.
Good luck to you all and remember to hold on tight as theres never any warning!

[HyperAngel]

ZED
Sorry to hear that you too suffer with the collapsing legs etc. It truely sounds a very scary & traumatic occasion when you were carrying your daughter & your legs 'failed'.
I think this incident clearly highlights how dangerous it can be and how it should be taken with more serious consideration by the medical professionals.
My 'collapsing legs' improved a little in my twenties, only to come back with gusto in my thirties and now I have just reached my forties it seems to be worse than ever. I think that the assumption that the stiffening with age improves it, is abit of a cop out by the medics-There clearly is not enough research & understanding reaching the medics that try to care for us.

I hope today is a good day for your joints etc.

Let's hope each day can be better than the last for everyone affected.

Hyperangel

[zed]

Hi just read your post and i'm quite releaved that i'n not alone in feeling more and more unstable the older i get. I tend to take things forgranted with my surroundings until someone moves furniture around then i really realise how much i've come to rely on the furniture in my house to hold on to! The funny thing is that not even my partner realises i hold on to stuff as i walk around (maybe thats just a bloke thing)!!!!
Here's hoping we manage to stay upright and if we don't may we not bruise too badly!
Take care all
Zed

[Eloise]

I hold on to everything to walk around - don't even realise I am doing it. I have to especially if there are steps or something. Today at work - I suddenly realised there was a set of steps and there was no hand rail, nothing for support. I was panicky - had to concentrate on my core muscle and go up really concentrating on my legs and my balance!

I have always had collapsing legs. Though never could tell if it is my knees / hips / ankles - i suppose it could be all three or just the muscle tone as well. Think it is getting worse, or could just be I am so exhausted atm

[lil_miffy]

yes i get it too. my left knee gives out randomly and my right hip pops out when i get up from sitting on my bed.

ive learnt now to get off bed slowrly putting weight on my legs.

my legs go to sleep randomly too usualy when ive been sitting down

when im out i can get away with falling flat on my face as people see my white cane and assume iv tripped.

[Sandy L]

Try sitting with your knee bent partially and see if you can push the kneecap ot one side or the other. Usually, it goes to the outside, but can go either way. If that happens, the anterior thigh muscles cannot hold the leg straight; indeed, they will cause the leg to double up further. Eitherknee braces or certain exercises will often help with that.

If all is well there, sit with your knee bent at a right angle to the thigh and have someone else grasp the leg just below the knee and see if they can either pull it forward or push it back. That would suggest a torn cruciate ligament, which would probably require a surgical repair.

[lil_miffy]

thanks sandy.
my right knee goes left and right. my other goes mainly out but thanks for pointint that out.
i only found out today i probably hav hypermobiliy and i eem to be learning new things every minute.

[rebeccagraceson]

Hi there

Trying to figure out which of my children are affected by EDS and yesterday out of the blue I overheard the 8 and 6 year talking about how their knees 'go' when they are walking and they fall down. They were talking about how it 'goes funny' but then goes back to normal.

This used to happen a lot to me til I was in my late teens/twenties I guess, and only very infrequently since (during pregnancy).

Just wondering if this is common with EDS or if it is in fact common in the 'normal' population.

Thx
Becky
xx

[vixenmeister]

I find myself h hugging walls a lot - I seem tto be infmaous for hitting the desck as both legs go form under me .
Like lil I am not sure how much is due to my vision imparing my balance and how much is due to things now working.
I seem tobe able to concentrate on using my guide cnae (whit stick) or where I am placeing my legs.

I get new leg braces on Monday so be interesting ot see what they do for me.

Vix

[Kayzee]

I'd say its EDS. Sounds like it, anyway.

Sorry not much help there, was I? Just wanted you to know, they're not alone hun

Kay x

[hannah]

I am a wall hugger too

Sandy - that is very interesting

Try sitting with your knee bent partially and see if you can push the kneecap ot one side or the other. Usually, it goes to the outside, but can go either way. If that happens, the anterior thigh muscles cannot hold the leg straight; indeed, they will cause the leg to double up further. Eitherknee braces or certain exercises will often help with that.

Do you mean leg bent and relaxed or tensed? If I really tense it then my kneecap doesn't move, but if it is relaxed it can go both ways (both legs). Would this explain why if I 'just walk' my knees give, but if I concentrate and overtense they don't (so much)?

If all is well there, sit with your knee bent at a right angle to the thigh and have someone else grasp the leg just below the knee and see if they can either pull it forward or push it back. That would suggest a torn cruciate ligament, which would probably require a surgical repair.

I tried this one and the shin bone (I think) does shift forwards slightly - prob only 5-7mm. Again on both knees. But I have never knowingly had any proper knee injuries that I can remeber (although I probably sprained them at some point as a kid) so is this more likely to be due to general laxity rather than ligament tear? Would this explain why When I do the 'bridge' core stability exercise (feet on floor, lower leg upright, shoulders on floor, bum lifted up by activating core stab. muscles) my knees often feel like the shin bone is being slowly forced out of my knee? In which case should I be telling my physio about it?
Warning: trying this hurt so please be careful I really must learn to be gentle when doing this kind of thing rather than thinking 'of course mine won't cos I'm not that bendy, apply pressure ......... ooops maybe I am bendy after all

How come no-one has ever looked at these when I complain of collapsing legs and an inability to keep my knees operative?

Hannah

[Spireite]

Many years ago, before I knew I was bendy, I had major left knee trouble, a top physio wasn't sure whether I'd ruptured my ACL cos my knee was so loose. Then I had exploratory arthroscopy and all was fine 'cept for an inflamed plica due to my loose knee pinching it. Cutting that out sorted out the immediate problem, but I'm still worried my left knee feels very loose and one day I will rip my ACL just pottering around at home. I can't get any physio attention for my knees cos I have so many more misbehaving joints higher up the list of priorities. I do have very strong legs, but how do I strengthen the medial quads?

I'm sure my knees giving way stems from my hypermobile and hypersensitive L3 as above. I'll know for sure when that's denervation kicks in in 2 or 3 weeks time hopefully - I'll let you know.

[Sandy L]

I am a wall hugger too

Sandy - that is very interesting

Do you mean leg bent and relaxed or tensed? If I really tense it then my kneecap doesn't move, but if it is relaxed it can go both ways (both legs). Would this explain why if I 'just walk' my knees give, but if I concentrate and overtense they don't (so much)?

It moves more easily when relaxed, so that would be the way to check it.

I tried this one and the shin bone (I think) does shift forwards slightly - prob only 5-7mm. Again on both knees. But I have never knowingly had any proper knee injuries that I can remeber (although I probably sprained them at some point as a kid) so is this more likely to be due to general laxity rather than ligament tear? Would this explain why When I do the 'bridge' core stability exercise (feet on floor, lower leg upright, shoulders on floor, bum lifted up by activating core stab. muscles) my knees often feel like the shin bone is being slowly forced out of my knee? In which case should I be telling my physio about it?
Warning: trying this hurt so please be careful I really must learn to be gentle when doing this kind of thing rather than thinking 'of course mine won't cos I'm not that bendy, apply pressure ......... ooops maybe I am bendy after all

How come no-one has ever looked at these when I complain of collapsing legs and an inability to keep my knees operative?

Hannah

Five to seven mm would ordinarily be considered significant. I find myself wondering how reliable that sign is in hypermobility. Perhaps it does not warn of a torn ligament, just a very elastic ligament. That's a question for the experts. In any case, knee braces might prevent further injury.

[Eloise]

Well my hip collapsed on me this afternoon. Just leant forward at my hips and my right hip "popped" and I fell to the side. Good job I was leaning over the spare bed!

I think it is because I tired my hips out walking with my walking stick yesterday. I guess using the walking stick means I shouldn't walk any further! (just more stable as I do it)

[hannah]

I thought I would add my recently acquired knee-wisdom (thanks to tabi) to this thread. It would appear that my collapsing has much to do with knee stability. I tried a fabulous pair of knee braces at the residential and went from walking like a drunk string puppet to being able to walk perfectly normally with NO CONCENTRATION!!! Seeing as I haven't been able to do that for over 2 years it was amazing. Needless to say my next stop will be orthotics where I will refuse to depart until I have been promised a pair of my own miracle knees.

The braces just supported normal movement and stopped the wobbles that shouldn't exist rather than limiting healthy movement, which was also impressive.
So fingers crossed, a significant reduction in collapsing legs is now on my horizon (I just hope it gets here quick cos they have been doing my head in today and yesterday - I keep having to walk bent double with my hands holding my knees upright - just to get from A-B. sigh. )