Knobbly Knee Problems and Subluxing- what does it feel like?

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.....

Knobbly Knee Problems and Subluxing- what does it feel like?

Postby PoppyRed » Sun Mar 06, 2011 9:24 pm

I searched for descriptions of what subluxing actually feels like, but couldn't find anything that answered my question!

I score 9/9 on the Beighton Scale (when I'm not stiff and recovering from injuries!), and in my childhood and teenage years, I was always accidentally injuring myself without realising. I've also received a diagnosis and have many related issues and symptoms. However, my question is this: what does a subluxation feel like? and can they occur without me realising, and cause agony or a feeling of being 'out of place' or 'needing to click', after the sublux has happened? In my teens I suddenly had severe shoulder pain after lifting a box at work, but didn't know how the injury had occurred, and don't even remember it hurting at the time. The pain took 20 mins to kick-in. The result was a suspected trapped nerve and a swollen hand! To this day I still don't know if I dislocated it, but it felt 'wrong' for months and still plays up (I'm female, 23). My hips also clunk and click in bed when I turn over, and over-extending my legs (which happens every time I walk without intentionally bending my knees slightly) causes shooting stabbing pains, stiffness and occasional swelling in response to injury. My jaw also clunks, and different joints have started joining in- especially since some Rheumie examinations and demonstrations of my 'party tricks'.

Are these sensations and clicks/'clunks the result of subluxation?
Can HEDS become progressive if injuries occur too frequently for the body to effectively heal itself? I keep getting so much pain- acute, severe and chronic, but I don't know what I've done to cause it 8-/

God Bless and Thanks for reading :-)
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby laracomps » Sun Mar 06, 2011 10:34 pm

Interesting question!

My hips do the same as yours do when I walk, but I would say that the feeling of clunking that happens when I walk is different to that of the feeling when it subluxes.

However, what I would say is that the clunking you are describing is what I would call a 'warning sign' for my hip being about to sublux. So it might be that? I am not sure what anyone else has to say on the subject, as I may be completely wrong and they are subluxations as well.

In terms of the shoulder, I've moved mine suddenly from time to time and basically had a subluxation but didn't necessarily feel it until the after affects which I recognise very well including (normally) subsequent subluxations.

With my knee caps I seem to get 2 types of subluxation. One where the patella slides off sideways, often caused by twisting my knee, or landing on it awkwardly. The second type is a fairly new one with me and happens if I have been kneeling and stand up, when I straighten my leg my knee cap almost snaps backwards and almost feels as though it has cracked in half. OMG the pain!! Often end up on the floor when that happens... thinking about it, I do with the other type too lol.

Hope that helps a bit? I've probably completely confused you now hehe :hug:
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby nemonie » Sun Mar 06, 2011 11:55 pm

Hiya - some technical anatomical jargon for you first - a sublux (as we tend to call them, though it should really be called a subluxation :roll: ) is a partial dislocation, where the joint or an area where two or more bones meet (i.e ribs) move out of position, but not completely out of the joint capsule or past the next bone. A full dislocation is when the bones move completely out of position.

Snapping, crunching, popping and various other exiting noises we get are due to our joints moving about so much, but what it is exactly that is causing each specific noise is up for argument - air in the joints (controversial :lol: ), bones crunching, ligaments/tendons snapping.

We do have a long thread on dislocating/subluxing - what is the difference - where people discuss how they experience their various lovely injuries :eh:

Subluxing/ating (depending on how you want to spell it) can occur without noticing, it can even occur without pain. I can sublux the same kneecap both with and without pain within half an hour, it depends very much on whether I am weight-bearing on the leg at the time, as to whether it hurts (or how much it hurts). My shoulder slides in and out constantly and I only notice it's out when I twist my arm to check every 10 minutes or so (the pain is pretty permanent in that shoulder now) and it pops back in. Some things are a bit more dramatic though,such as my recent realisation that I can sublux my tibia from my femur (bottom of leg from top of leg, at the knee) that was ridiculously painful and helpfully dislocated my kneecap at the same time.

Sorry if I havn't been too helpful. I think the best description I can come up with is the joint just feels wrong, even if it's not painful. It feels creepy and wrong, definitely feels out of position (when you can actually still feel positional data in that joint) and can often be painful, but the acute pain is often short-lived if there is little tissue damage from the sublux.
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby PoppyRed » Mon Mar 07, 2011 3:45 pm

Thanks guys!

Your info and own experiences are massively helpful! :-)

My legs naturally bow quite a bit when I'm standing or walking, however I'm in so much pain at the moment that I have to bend my knees a bit and hold onto furniture while I'm walking. Once my knees 'repair' again, and un-stiffen, I start walking 'normally' (with the bowing), but in a day or so I'm in agony again and it takes 1-2 to recover!

My sister is younger than I am, even more flexible, with super-bowing knees (as in, they curve backwards) and has just started with severe IBS. She doesn't have any other symptoms... apart from cracking her joints constantly and subluxing her shoulder, but I'm so worried she could end up in the same position as me! We're both just married and in our early twenties.

I pray she'll be fine every day, but looking forward to when science can fix our genes :-)

Thanks so much for replying guys, still learning lots! :-) :-) :-)
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Postby sheppeyescapee » Sun Mar 20, 2011 2:21 am

I'm not entirely sure where to put this and my brain isnt working enough to figure it out so apologies. Am posting from my phone so apologies also if there are any typos.

I'm having a hard time with my knees at the moment. The pain is keeping me awake. My kneecap in my right knee keeps dislocating causing a lot of pain, is there anything i can do to stop this? painkillers arent really doing anything for it.
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby nemonie » Sun Mar 20, 2011 10:07 pm

Hi,

You could try taping your knees up to stop the knee-cap from popping out. It may take a bit of trial and error to find the best way to tape up your knee, but I usually avoid putting tape directly over the patella - I usually try and box them into where I want them with surgical or zinc oxide tape.
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby shedevil_kt » Sun Apr 03, 2011 12:42 am

if you have knee problems the best advice i ecer recieved was actually from another thread and that was to sleep with a pillow between your legs at night help to stop sublexing at night
hope it helps i know the feeling of sublexing in my shoulder i do that so often in my sleep it wakes me up the joys. i too have had hip problems however it started to improve when i started pilates and swimming i would defiantly advice both if you can manage it.
wish you all the best katie xx
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby lil_miffy » Mon Apr 04, 2011 7:48 am

Most of my subluxations are in my hips, left elbow and shoulders. I do occaisionally have knee ones and I'v had one full knee dislocation (i rarely have full dislocations).

For me a subluxation goes something like this:

I here a loud click,pop or snap in the joint and within seconds am aware the joint is 'wrong'. It feels like that feeling you get when you really need to crack your kunckles but alot more intense. Then when i try to move the joint its either suddenly very painful or feels like I am trying to move my joint in the opposit way its supposed to, theres alot of resistance. That's when i know its a sublux rather than just a clunk.
My discloations go back into place very easily, but my subluxations rarely sort themselves out and need alot of bending, stretching and sometimes brute force to fix it. My hips in particular take a long time to un-sublux. After a few minutes the muscles around the joint start to spasm and cramp. I think is the body's way of protecting the joint and preventing further injury but it actually makes it alot worse apin wise and much harder to put the joint back where it should be.
When a joint dislocates its very painful immediatly but the pain is usually instantly relieved once the joint is back inplace. But a subluxation the pain developes less quickly and is more painful AFTER the joint is back in place.

This is how a subluxation feels for me but we are all different.
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby Itigo » Mon Apr 04, 2011 9:58 pm

My knee is subluxing every time I straighten it, just at the end of the movement. I only noticed 2 weeks ago because it was sore and so I felt my kneecap while moving my leg. My physio confirmed that that's what's happening and suggested taping it. It still does it when taped - just hurts more.

Yesterday my friend gave me a massage to release my leg muscles a bit as that's what's pulling it laterally. She was concerned that releasing them though, would loosen everything more - can that happen? It's just that today I can feel the clunk and the horrid slippy feeling just by raising my leg - I don't need to be touching my kneecap.

Seeing physio this morning anyway but just wondered if anyone has had anything similar? I had a lateral release in 2005 before I knew I had HMS and 3 surgeries in all - the first after a proper dislocation 21 years ago.....No more surgery if I can help it but worried about the damage it's doing to an already mashed kneecap and I'm finding it really hard to build up my non existent VMO............
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby Green Thistle » Tue Apr 05, 2011 11:39 pm

I get this too. I actually just posted a topic about a similar thing that happens with my shoulder. I don't need to actually do anything for it to happen, it just happens itself.

And the same with my knee caps, they just sublux, usually when I'm not doing any activity, in fact it's normally when I'm in bed trying to sleep. It just feels as if they go off track somehow, and I always get the feeling that I have to sort them out quickly or else they will move even further in the wrong direction (if that is what they're doing), and that then they will hurt a lot. I don't know for sure that this is what would happen, but I definitely feel an urgency about it.

The only way I know of to 'fix' them when this happens is to repeatedly move my foot forward very slowly (so that my leg almost straightens), until my knee clicks. I always wonder if I'm harming my joints by doing this, and if there's a better way of getting things to go back to where they're supposed to be. Somebody mentioned massaging your leg for the same result, and I can't help thinking that maybe that would be kinder on the joint, and maybe less damaging (??? :S )
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby Herbgarden » Tue Nov 08, 2011 10:36 am

I suspect my hip has subluxed? Can it happen whilst sitting still?? I was travelling - way too many hours by car and not comfortable, then it suddenly just felt 'in the wrong place' - its the only way I can describe it. That was Friday last week, its not got any better. Its painful, I keep falling over and am rattled with other aches and pains. Its causing strain to the other side and the right side (the 'gone' side) is really weak anyway. How do you approach getting it back in?? With my fingers and feet which regularly pop I can wiggle them back but really not sure how to approach the hip and I don't want to fully pop it either.

Its felt like this before but normally just for a few minutes before going back. This time its been days. I have a doctors appt Thursday so maybe that will shed some light but I'm finding it hard to concentrate on anything.

I hope this is in the right place! Apologies if not.
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby laracomps » Tue Nov 08, 2011 10:51 am

Sounds like it. Mine often stays like that for days.

I find it very difficult to put my hip or shoulder back in to place. The only way I've managed to do it occasionally is to sit on a chair and push my knees outwards onto something that will provide resistance, eg a sofa arm,a willing partner etc.

Most if the time I'll find that I do something random like step up a kerb that I shouldn't be (naughty! ) and it cracks back in!

Good luck lovely x
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby Superstottie » Tue Nov 08, 2011 10:59 am

It sounds like it to me as well, the only way I can describe when any of my joints sublux is 'not quite in the right place' or 'feels wrong somehow' and of course the fact that they don't work properly. I suppose that putting it back would depend on which way it is out! For me the way I get mine back in can be different as sometimes I have to stand on one leg with the foot of the effected leg on the opposite knee and turn the effected leg knee out to the side until it pops, but sometimes I have to be sitting and sort of cross the legs and pull behind the knee to bring it up to the opposite shoulder (I am rubbish at describing things!)

Hope that helps, and hope it feels better soon! x x
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby Herbgarden » Tue Nov 08, 2011 11:01 am

Thank you laracomps! That was swift and much appreciated! I'm guessing now its been out a bit and stayed there that it may do this more often instead of the in/out its done for years. Time for a stick if that's the case if only so I don't fall over in the office and feel really stupid! I feel like a real old crock at the moment just hobbling about. I nearly went over twice yesterday, got saved by crashing into the door frame once and grabbing the desk the second. Bother!

thanks again x
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Re: Knobbly Knee Problems and Subluxing- what does it feel l

Postby trekster » Tue Nov 08, 2011 1:20 pm

It feels like im going to fall over and i get very stressed standing up especially in queues.
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