collapsing legs / legs not working!

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

collapsing legs / legs not working!

Postby hjbradshaw » Fri Dec 15, 2006 1:44 am

Hi all! I think I might have posted on this a long time ago, but can't remember now...having a senior moment!! Apologies for the lenght of this post...!!!

Does anyone else have problems with collasping legs? I am 45 and was diagnosed in 2000 with HMS, but also have osteoarthritis in my spine, (spondylosis/spondylitis), Polymyalgia Rheumatica (an inflammatory arthritis which affects back, hips, knees and shoulders), several whiplash injuries over the last 10 years, narrowing at L1-2 and a bulging disc at L5-S1, as well as lots of other chronic problems elsewhere such as shoulder impingement syndrome, chronic bilateral tendon inflammation in shoulders and elbows, etc etc etc..YAWN!!

I used to get problems with my legs collasping years ago, but that stopped, and have only had it happen occasionally since then. However, I had a car accident in the summer (yet another non-fault accidnt where someone fell asleep and went into the back of me TWICE on the motorway) which seemed to hit mainly my middle and lower back with the whiplash(I happened to have my soft collar in the car and put that on imediately which seemed to help the neck). I was taken to hospital on a spinal board because my neck and back pain were really bad, even tho I told them I had a pre-exisitng condition, and was left strapped with my legs flat out for several hours while they checked me out to see if there were any fractures, which thankfully there weren't! Lying flat out always really hurts my back, and this was no exception, so by the time I had been in hospital for a couple of hours, my lumbar spine was the most painful...

Since that time my back has been markedly worse, probably due to the whiplash, which my physio has been treating, but a couple of months after the accident, on a particularly stressful tour aborad with work (I am a violinist in a major symphony orchestra)where I had to do a lot more walking and rushing around than I can normally do, my legs suddenly started letting me down and i kept finding myself on the floor. I now use a walking stick on a permanent basis, but folk at work do not understand at all, and rarely see it happen (my legs collapsing) because I don't have to do too much walking backstage at work.

Anyway, i am wondering if anyone else experiences this? It is extremely embarassing for me, and I can't predict when it will happen, except it is much worse when I am tired. I think it may well be connected to the HMS because my back is extremely unstable due to years of over-manipulating by an osteopath when I didn't know any better!! So things move in and out very easily, and my physio has told me (as has another GOOD osteopath!) that I must never be manipulated because I am so unstable and have so much inflammation. My lumbar facet joints are very inflamed, as are my sacro-iliacs, but I still have a feeling it is more connected to the HMS and things moving in and out and trapping nerves. I get a lot of sciatica as well.

I have just had a lumbar MRI and am seeing an orthopaedic Dr about what is going on, and am being referred to yet another rheumatologist in connection with the car accidnt and my personal injury claim, but my physio wonders if I might have a spondylolythesis/spondylolysis as a result of the accident, and you can onyl see that sort of injury on a particular type of x-ray taken at a particular angle.

I would feel much better if I knew that I am not the only one out there with this problem!! It has brought it home for me tonight because my legs collapsed at work tonight unexpectedly just before I was going on stage for the 2nd half of the concert, and it really knocked me for six, as well as being humiliating, because people thought I had fallen over or tripped, and I can't sya 'this is bieng caused by...' I can only try and explain!

I have been less and less mobile over the last few years now, but this is getting ridiculous, and is ultimately threatening my career, especially touring abroad, due to the walling and lots of stairs etc (oh yes, having to walk up stairs makes it much worse!) I am sitting at the computer now feeling very sorry for myself and hurting sooo much, even after taking tramadol tonight, so sorry if this is a moaning message, but I am just after some reassurance and possibly info to take to the orthopaedic doc and the accident rheumatologist.

You will be pleased to know, on a positive note, that I am applying for DLA, even thio I know I will probably be rejected 1st time! I can just about manage getting around at work (most of the time if I am careful and go at my own speed), but cannot really go out anywhere else unless there is a mobility scooter to hand!

hoping everyone is having a lower pain day than me,
God is my refuge and strength: a very present help in times of trouble (Psalm 46v1)
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Postby HMSA Admin Team » Fri Dec 15, 2006 1:50 am

Hi Heather, it is late so am saving your post for tomorrow but the title rings true for me, i am in my forties and my legs do collapse. Am a little tired but wanted to answer for support. Will read your post tomorrow. nonyax
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re collapsing legs

Postby hjbradshaw » Fri Dec 15, 2006 3:05 am

Hi Nonya! Thanks for posting: i was really surprised to see that you were still up...I thought it was just me that was a late bird, partly due to my profession, which means I work evenings and then have to unwind after concerts, LOL!!! I look forward to reading more from you tomorrow...although am not sure when I will be able to get onto the computer as we have a carpet cleaning company coming tomorrow to clean all the carpets, and that means I will have to stay off the carpets as much as possible...meaning I will probably go out!!

I hope you manage to get some sleep...unfortunately my mind is still buzzing! I take tramadol, and it seems to have the same effect on me as a glass of wine if i take it in the evening: I feel sleepy initially, and then something inside me goes 'zing!!' and I wake up and can keep going until about 5am sometimes!! (a bit like when I first went onto steroids!)

Anyway, hoepfully I will be able to read your post tomorrow sometime!!

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Postby Sandy L » Fri Dec 15, 2006 5:56 am

If the sensation in your legs is not disturbed, it might be a kneecap slipping to one side.
I am a physician specializing in occupational and environmental medicine. I am not an authority on HMS or EDS, but find I have several patients with the condition and am trying to learn more.
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Postby JazzyJaz » Fri Dec 15, 2006 1:05 pm

My legs also give up and collapse, and it gets better or worse depending on how the rest of me is normally, although i do get some rather random moments as well. They started doing it before I was diagnosed and before I REALLY noticed there was something wrong with me, but have got worse as the rest of me has.

You're definitely not the only one!

Postby Rosie » Fri Dec 15, 2006 2:54 pm

Hi all

My legs collapse occasionally, I am in my 40s. I find that usually it is my ankle, knee or hip that refuses to take weight, and just gives up so I land up on the floor. As you say, it's rather diconcerting. This has happened a couple of times in work. Once it happened when I was on my own, and I had to crawl across the office to lever myself up on a desk, and the other I was in my boss's office and landed on the filing cabinet.
I usually just brush it off with 'not again, don't panic, this happens, it's just part of my condition'. Bad falls often lead to some tissue injury and subseqent pain, with others I can carry on as if nothing has happened. Our lives are never dull, are they? I am also worse when I am tired.
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Postby grey owl » Fri Dec 15, 2006 4:47 pm

Dear HJB,

I am really sorry to hear about all that you have been going through and I am very impressed to hear that you are still managing to play and tour with your orchestra. To think that I gave up playing the fiddle with our little local amateur orchestra because of subluxing fingers and shoulder- I am such a 'wuss'!

My left leg sort of gives out from time to time due to something going suddenly wrong at the back of my knee. A couple of weeks ago it happened going upstairs in my flat and I nearly fell which gave me a nasty shock. I hope that you get a really definitive answer about what is causing it - and soon! It is awful having to deal with bodily randomness in public and must be doubly so during a concert. At least if you know it is due to your HMS you will be able to say so if anyone asks.

Do you have any medics/ physios etc linked to your orchestra who may be able to give you extra support whilst you are going through this? At least you know that some of us have similar problems so you are not entirely alone with this.

Do PM me if you want to talk about music related HMS things.

Lots of painfree hugs!

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Sometimes B sharp, never B flat always B natural.
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Postby Fiona-Jane » Fri Dec 15, 2006 7:47 pm

mine do too, but im lucky - only my left leg really goes, my right just feels wobbly and weak, but doesnt actually collapse (yet?).

for me it seems like i collapse from my knee, although i'm trapping a nerve in my hip/back and so my left leg often feels rather odd! im only in my mid-twenties so i'm hoping that once ive fixed the nerve thing, my leg will stop collapsing as often. or i may have to go onto crutches, which im tryin to avoid as long as possible! im due to see the orthapaedic surgeons at my local hospital soon. hopefully they'll be able to help me!

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Postby nonyanomemory » Sat Dec 16, 2006 1:51 am

Hi Heather,

Sorry I didn't get back earlier. It seems most of our stories are similar here. But sometimes I get it and its as though my brain has forgotten that i am standing up! It may be an POTS thing with me, caused by blood pooling in the legs though - do a search on POTS or autonomic dysfunction just in case its not related to a joint giving way and may be related to sudden drops in blood pressure. I am not a doctor so obviously this is just me saying how it is for me.

It is worse hormonally also as my hms is worse then anyhow, as is the case for a lot of us!

How are you doing anyhow? Any unexplained collapse should be investigated by a doctor. Hope it hasn't happened again since. To help prevent the falls caused by sliding knees and popping hips my physio had me practice making all manouveres in small circles rather than every turning sharply and 'thinking' before I make a movement to give my brain time to catch up with what I am about to do, if that makes sense, something to do with the poor propriopception (sp) thing. Also because of autonomic issues I find standing still as in queuing etc impossible and if I do have to stand still, moving the feet around to prevent the blood pooling in lower limbs can help prevent a fall for some.

Take care nonya
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V Prem club ft short stature early onset varicose veins thin skin
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Postby hannah » Sat Dec 16, 2006 12:49 pm

My knees sometimes give way too - not dislocate or anything, just stop standing. It is like they have just forgotten that they are standing up. Fortunately it is usually only one side at a time, and I have been holding a crutch, so not fallen over :).

I was thinking that maybe it was because my legs were weak or something - but my kid sister (who almost certainly is HM - multiple dislocations etc) has knees that do the same, and she is really active, and cycles about 6 miles a day, so it kind of blew my theory :duh:I get worse when I am tired too. I wonder whether it is a poor proprioception thing, so a different part of the brain kind of compensates, but when we are tired, this doesn't work so well???

So, yep, mine do, but I haven't a clue as to why - it is actually one of those things that until recently I thought happened to everyone :oops:.
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Postby sarahh » Sat Dec 16, 2006 10:02 pm

My knees give way sometimes aswell and they go back on themselves which is really annoying at times. I mentioned it to my physio a week ago and she has given me some exercises to try and stop this from happening.

Sarah x
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Postby hannah » Sat Jul 21, 2007 2:29 pm

Well, I thought I would resurect this thread because my knees are now giving way on a regular basis (as in every few steps today) and I am trying to figure out why and what to do to improve it.

I don't end up on the floor - I just kinda 'drop' by about 6 inches then my muscles catch up and stop them. The joints don't hurt, but I am starting to get some muscle ache just above the knee which I suspect is from the frequent strain of going from fairly relaxed to panicked catching entire body weight. I have also quite often had them both go at once and have come very close to falling over backwards. (I love handy walls, sideboards, furniture!!)

I thought maybe it was just muscle weakness, but I can do 25 'sit to stand' exercises, and lots of the sitting-on-a-chair-and-repeatedly-straightening-the-knee-and-holding-it exercise. More than i could do when I was on the PMC in Sept/Nov last year, when knee popping was an occasional nuisance. So I don't think this makes sense.

I am wondering whether they are doing a slightly odd sublux of the knee as opposed to the kneecap for the following reasons:
1. muscles appear fairly strong
2. It usually feels like the smooth movement is momentairly stopped, then suddenly freed
3. I can sometimes hear a 'thunk' when they go
4. my knees are hypermobile sideways - they don't bend back, but wobble sideways. (Dr H said he hadn't seen knees like mine for quite a while :lol: )
5. I have recently noticed that when relaxed my shinbone can rotate about 30 degrees without my kneecap so much as twitching. None of my friends do this so I am assuming it is a bendy thing :lol:
6. They almost always go from the same position/part of a step - the bit where it goes from straight to bent with most of my weight on it.
7. If I walk with my knees either bent or forced straight the whole time, they don't collapse on me - however, my ankles, hips and pelvis don't like it, and neither does the part of me that wants to learn to use my body properly so that I am in control and not my EDS :(
8. It is worse hormonally

Anyone have any ideas?
I am rather fed up with it. Needless to say the sudden jerky movements don't agree with the rest of my joints, or with carrying hot drinks :roll:
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Postby ombili » Sat Jul 21, 2007 7:23 pm

Wow, it's kind of odd that this is here today, hannah. We must be on the same wavelength. I was just going to come on here and look this up today. In fact, I was going to right now. I just came from the gym and while I've always had what you're describing happen occasionally, like once or twice a week, it was happening about every five minutes on the elliptical machine. I almost fell off, in fact! Yikes.

I think that I've read that strengthening the quads is the most important thing but of course I do a lot of quad exercises and I'm sure you do too from the sound of things.

As for my knees, I don't think that they are very hypermobile but the one that doesn't hyperextend at all also makes a very loud (as in you don't have to have your head that close to hear it) grinding sound every time I bend or straighten it, so I am thinking that knee is probably damaged and might have been more mobile at one time. I don't really know about the sideways hypermobility as I've never been examined for it and don't know what to look for.
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Postby hannah » Sat Jul 21, 2007 8:25 pm

Hmm, you do sound very similar ombili. most of my neuros etc recently have commented that my legs are quite strong - although that may be because they see me in a wheelchair and think I do no walking or exercise :roll:

I don't really know about the sideways hypermobility as I've never been examined for it

- Well, Dr H held my leg relaxed straight, knee facing up holding my ankle and just above the knee and then gently pushed the knee sideways with his shoulder :shock: I have to admit his face made me laugh - I swear he was trying not to do the freak show "ohh how interesting, lets do that again" thing that so many ignorant Drs do :lol: but instead tried to put on the proffessional "yes, I see you are hypermobile" face. bless.

My elbows do the same, and when I asked a physio about elbow exercises she said their weren't any because there weren't any relevant muscles cos technically elbows don't do that :( I am hoping that that doesn't apply to knees.

Anyway, back to knees :help: - There are two of us looking for collapsing knee help, does anyone have any ideas? please?
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Postby sarahh » Sat Jul 21, 2007 8:35 pm

Hi Hannah When I subluxed my elbow m physio said just to keep it moving as much as possible I don't think they are really any exercises for elbows.

I have an exercise for my knee not sure if it's for collapsing knees but here goes.

Lie on floor or bed with pillow under knee

tighten knee muscle

lift slightly in air

hold 5 secs and gradually increase the reps you do. I do this 3x weekly and I was told to do 30 reps each leg and then when you have mastered this do it with a weight on the ankle (I use a 1.1 kg ankle weight) and do it and do 30 of those.

I hope this helps

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