By Geri on Thursday, February 22, 2001 - 10:15 am:

Hi, I was just wondering if someone who has knee problems could describe what a subluxation feels like to them and how they can tell that this is what is happening.

I dislocated my knee a while back but for some reason its causing bigger problems now than it did a few months ago. I don't know if I'm getting subluxation or if its just moving around strangely. OK its mostly when i go up stairs, the joint feels 'wrong' in some way and also feels like its scraping the kneecap on the inside. Sometimes it also twists and I can feel it going 'clunk' if I put my hand over the kneecap. This only happens about 3 or so times then it seems to be working relatively normally (its version of normal).

On top of this I can just be sitting with the knee bent and it will start to hurt for no apparent reason. So would this count as a subluxation (above I mean)? Its not like i can see a big bone sticking out and I just put it back in (the pain of imagining that makes me shudder).
Sorry that I'm always asking questions, but I really need the advice of someone who experiences this regularly so i can judge as to whether this is whats going on with me too.
Pls answer someone!

By Patrina on Thursday, February 22, 2001 - 02:58 pm:

Hi, Geri,

My subluxations usually feel like a 'collapsing,' where suddenly my knee 'buckles' under me, or my shoulder 'gives way' when I stretch too far, and as a result my arm falls when I didn't intend it to.

Sometimes they've happened with only very slight movements, too. It just depends on the movement. For me, keeping my leg muscles 'tight' while I'm moving seems to prevent the subluxations from happening as often. But sometimes it happens anyway.

It sounds to me like you've got subluxation going on. It could be the hypermobility, or due to another cause. If you're having a lot of pain, and/or swelling, definitely see your doctor. You'd probably need to get referred to an orthopedist, and have x-rays & possibly MRI so the doc can see what's going on. I personally after many years of 'toughing through' symptoms have had a lot of damage to joints as a result. It's just best to play it safe.
Patrina

By Geri on Friday, February 23, 2001 - 07:28 am:

Luckily (or unluckily i guess) I'm waiting for an appointment to see a hospital specialist - but on previous knowledge this probably means that I'll actually see the specialist in about 6 months to a year (not exaggerating at all here - has happened before). I'm also going to have an MRI i think. I just wish i knew for myself exactly why the knee is doing what its doing.

I was trying to look things up on the internet to see if i could work out whats going on for myself, but all I've found is sportspeoples' accounts of how their kneecap has dislocated, they put it back and it was a bit swollen and a bit painful for a week or so. When i read these accounts I think 'What??, how can they do that?'
When i did mine in I couldn't even straighten the leg (once I'd re-located it myself - by accident) let alone walk on it. The pain was absolutely agony, like the worst, and it took over 3 months to get back on my feet without crutches (I had bleeding in the joint I think). The pain has never really gone completely if I'm honest. Thats why I can't understand how some people can be so OK after something like this.

Anyway, thanks loads for replying. I'm hoping that someday I might have a 'normal' knee back, like one that will let me walk for more than about two hours without hurting.

By Lin on Sunday, February 25, 2001 - 07:48 pm:

you dont need all that. i can practicaly guarantee you have chondromalacia patella, sounds just like me. what it is is because of hypermobility the patellar ligament doesnt hold the knee cap in place, and it slides around and out of its groove. the grinding feeling is literlay grinding, it rubs the cartliage unnaturaly underneath. the symptoms, the sliding feeling, subluxation feeling with pain and grinding, expecialy while walking, running, or going up and down stairs fit symptoms exactly. and unfortunately, if it is chondromalacia you wont ever have a 'normal' knee back, it leads to osteoarthritis, and while there is treatment there is no cure for the pain etc. damage has already been done. but dont feel bad, i have HMS and probably EDS 3 also, and chondromalacia pretty bad in both knees, and i am only 15. what joys do i have waiting for me in old age, considering i already have arthritis and osteoarthritis. oh well, just trying to be helpful with some information and also vent at the same time =) hope you find relief soon!
Lin

By Geri on Thursday, March 08, 2001 - 10:16 am:

Lin, do you have any exercise which you've been given to help the knee problems? From what I've found out cycling and running up and down stairs is supposed to help (and this is what I've been trying to do although the running up the stairs bit is painful, so I try and avoid that). As I know I'm going to have to wait ages i don't want to degenerate it any further, but then if I dont exercise the quadriceps will weaken which will make it worse!
Have you had (i think its called) anthroscopy on your knees? This is what I'm likely to have to have on mine, maybe it could help you as well if you suggest it to your doctor.

By Sharon on Thursday, March 08, 2001 - 05:18 pm:

Geri,
Arthroscopy is a surgical procedure to look in side you knee's they can do minor repairs also, it is just a form of keyhole surgey, so unless they find a problem that they can fix under arthroscope surgery . the actual surgery won't help, except as a diagnostic tool to rule out cartilage tear or ligament tear etc.
Hope this helps
Sharon. (i have had 3 scopes on my knee and one on my shoulder)

By Mitch on Friday, March 09, 2001 - 01:45 am:

Hi Geri,
I had an arthroscopy on my knee many years ago now and although it was only supposed to be an exploratory operation they did actually "shave" some damaged cartilage away.
The physio gave me post-op exercises to build up my weak quads.They may be helpful to you, but I would advise you to talk to your doctor or physio really, I'm not qualified and I could be doing you more harm than good! Please take care :0)
OK, here goes...
Lie on your back on a not-too-soft surface (an exercise mat is probably the best) with your legs straight. Hyper-extend one leg at a time so you raise your heel off the floor but DON'T lift your leg. These are very small movements which should be slow and controlled. Just do five on each leg (or less if you prefer) and build up slowly.
The other one you can try is to sit on a hard chair which is high enough so your feet don't touch the floor. Be aware of your posture and don't slouch. Again, one leg at a time, raise your foot so your leg is straight out in front of you. Slowly and controlled, bring it down and at the same time raise the other leg. You will feel your quads working but again this is very gentle. I was given small bean-bag weights to place over the tops of my feet for later on, you could use bags of rice instead.
Good luck, and by the way, I was up and walking the day after my surgery, it isn't too bad ;0)
Mitch

By Lin on Wednesday, March 14, 2001 - 03:56 pm:

No, I didnt have arthroscopy. Your need to be very careful with the things you do exercising, you could make it worse. I did bike, and do a stair stepper along with quad weights etc in physical therapy. I was also taught how to tape my knee caps to keep them in place, and given a theraband with a list of exercises to do at home with it. You may want to look into mconnel technique to tape knee caps in place, it relieves ALOT of pain!
and Mitch, I dont agree with your exercise suggestions, because you should NEVER hyperextend your joints while exercising! always do within limits of movement, normal limits, not our hms limits.
Lin

By Iggie on Thursday, March 15, 2001 - 04:57 am:

Hi Lin,

I too have chondromalacia patellae, as a result of EDS. I was diagnosed by arthroscopy and had a lavage at the same op. to remove the loose/softened cartilage. I have had problems since I was early teens and am now 31, but I have never heard of mconnel strapping - can you give me some advice or point me in the right direction re. the mconnel technique? Thank you, and hoping you are having a good day!

Iggie

By Patrina on Friday, March 16, 2001 - 09:14 pm:

Dear Geri,

I've had three (yep, count 'em!) arthroscopies, 2 on the right knee to remove loose 'debris' resulting from hypermobility-related injuries (not that we knew that at the time). One was in 1981, the other about 4 years ago, by different doctors. Orth. surgeons specializing in sports medicine & with plenty of experience do fine. It's not bad at all, as surgery goes.

I think it's improved over the years. The second time, I used a cane for the first day, as my knee felt kind of unstable. I put it aside the next day to go after my dog, who'd gotten away from my husband at a rest stop, and didn't use it again.

The 3rd arthroscopy was on my left knee last Sept. I was having similar symptoms to those of the right, knee locking, buckling, generally unstable & painful everytime it did something 'odd' (which was pretty nearly anytime I moved!). But that one turned out to be (I have a perceptive g.p.) a rather rare tumor inside the right knee. It's doing okay, for now. The recovery was longer that time, because the surgery was much more extensive, but that's another story.

Anyway, I don't find arthroscopy scary at all, anymore. I'm not saying I like surgery, because I don't (& anyone who did is crazy! except for how it can help us get better or well). I think I have brain fog; I'll stop rambling. Take care.
Patrina

By Sharon on Friday, March 16, 2001 - 09:52 pm:

Patrina,
Like you i have 3 arthroscopies on my knee from hypermobility related injuries but i have also had that knee reconstructed not once but twice (yes i stretched the first ACL graft they put in.
I also don't find "scopes" scary as they are nothing really compared to the reco's. i also don';t like surgery but for me it was a necessaty i(i had torn the ACL clean out of my femur and i kept falling over as my tibia came out in from of my knee and i fell).
Just wanted to say you are not alone
Sharon

By Diana on Monday, March 19, 2001 - 12:13 pm:

Hi, my name is Diana. We have a nine year old son who is double-jointed. About 2 years ago he started having problems with his knee. I it would pop and he would be in a lot of pain until it popped a second time. Than, it was fine. We have taken him to several docters and no one seems to know what it is. Recently it has gotten worse. It now effects both knees, his ankles, and his wrists. Sometimes when we are walking in the store it happens to his ankle he will grab it and said it popped he sits down for about 10 minutes and then it pops back and a little latter it will happen again. This can continuously happen all the way through the store until we get to the car. Nolan, has low muscle tone(<3) and is in the 3% of weight. He has longer than normal arms, legs, toes, and fingers. He is in about the 10% for height. Both his sister and brother also are double jointed and have hypotonia. Nolan also is mildly flatfooted. Does anyone have any suggestions what we can do. Nolan also has developemental delays as do the other two.

Any information would be appreciated.

Diana at amersport@hotmail.com

By Geri on Tuesday, March 20, 2001 - 07:05 am:

I'm soooooooooooooo relieved! I dont have to have the antroscopy!! Yay, how great is that? Thanks for all peoples adive though - it was greatly appreciated! Lin, you were totally right I do have chodromalica patellae/partially dislocating kneecaps in BOTH knees I've been told. Also general hypermobility. To fix problems in later life I'm having strengthening exercises and learning how not to use my body in a double-jointed way (if you know what I mean), so that I dont end up with full HMS in later life. Can anyone give opinions on whether this works quite well for them?

By Lin on Friday, March 23, 2001 - 06:38 pm:

sorry for the delay in replying iggie. mconnel taping, you place cover roll tape starting from the outside of the knee, on the side, across to just past the middle hamstring. Then you take a piece of leukotape (sp) and put it about where you started with the cover roll, and press your knee cap to the sidemaking a pinch of skin on the inside side of the knee cap, and tape the knee cap in place. the tape should end at the middle hamstring, and the edge should be at least covering half the knee cap, but not much more than half! half is perfect.

Geri, thats great that you dont need surgery! I was so relieved when i didnt need it for my knees so i know how you feel. yea, i think chondromalacia is pretty common with HMS people, i know of alot that have it. I went through about 11 weeks of physical therapy with my knees and learning to not pop things out of place! I am better educated now, so it did help, and i dont dislocate things as much, i avoid things i know will be bad for me and wear braces and things to avoid injury. good luck with everything geri!
Lin

By idance4Him on Sunday, January 25, 2004 - 10:55 am:

I don't know if I'm just weird or this is a symptom of sublaxes but my shoulders (left especially) always feel like they aren't in the socket all the way...I had x-rays taken and the doctor showed me that my left shoulder was somewhat "sagging?" When i stand infront of a mirror my shoulder hangs about an inch below my other shoulder!? Is that a sublax?

By Michelle Castle on Friday, January 30, 2004 - 11:21 pm:

Idance,
It may be a posture-related problem that causes one shoulder to sag relative to the other. You might try looking in a mirror to see if one hip sags as well. As far as correcting postural deficits, it's all a matter of relearning how your body should feel when at rest, or what a neutral position is. Specific exercises can really help; there are tons of web pages with related info, or you can ask your doctor or therapist. Improving my posture has been helpful in reducing pain in my upper back (shoulder blade region.) To get an idea what poor posture looks like, check http://www.body-wize.com/beforeandafter.htm

If your shoulder feels like it comes out of the socket, I'd reccomend exercises to strenghten your shoulders. I do lateral raises, front raises, shoulder presses, internal rotation, external rotation, pushups (on knees), lying rear lateral raises, and rows. My orthopedic seems to think the internal rotation, external rotation, and pushups are the most important for multi-directional instability of the shoulder; my old physical therapist had me doing the rear lateral raises and rows to correct a rounded shoulders posture. And my hand therapist perscribed the lateral and front raises. (And people think I'm joking when I say strength training is my new hobby!) If you want to know how to perform those exercises, visit http://www.exrx.net/Lists/ExList/ShouldWt.html and http://www.exrx.net/Lists/ExList/BackWt.html

Michelle