definitions: Subluxing/dislocating joints

[l00pyp0u]

Could be a trapped nerve. I've had several, shooting pain, pins and needles, and as for picking anything up, forget it, hurts like the blazes,

Sorry, best advice here, is off to the doc's with you,

might need physio to release it, I did it 3 times, need certain pressure on neck, so it's not something just anyone can do, as it can kill you.

Lou

[cinders]

Hope someone here can help.
I've had this b4 but it's worse today. Woke up this morning with severe SI pain which i am kind of used to since pregnancy. But i also had awful pain and stiffness with my left shoulder. It was kind of shaky too. The shakes wore off and i stayed in bed and tried to sleep on other side. When i woke my right shoulder was slightly sore. This has eased but left one is still sore and stiff. I have full range of movement so know it can't be serious but know that if it is like this still in morning I will be pushing myself if i work. But if i don't work i don't get paid as i supply teach. Hubby had his hrs cut recently so feel i have to make up for his hrs being cut by trying to work as much as i can.
I did use crutches more than usual yesterday but i am convinced the shoulder pain is more down to my sleeping posture. Do i need to sleep on my back? Does anyone else find they can't sleep on their side. I don't think it will be worth seeing the dr as don't think he can do much. I feel like i need to wear a sling or something to take the weight of my arm. I have always been told my shoulders are rounded but that was b4 diagnosis and never really mentioned them to prof.B as wasn't a major concern. My older sister has had severe problems with shoulders so i am really worried about following in her footsteps. She had one shoulder pinned and then fell and because the arm can't move due to pinning it snapped under the pins. Horrific! She was a mess and had bone grafts which got infected, long story but she nearly lost her arm. The other shoulder is now permanently dislocated unless she has a brace/cushion under it and she awaiting to see prof.B for a diagnosis and to see if he can save her shoulder. I know i am no where near as bad as her so i don't like to make a fuss but am worried if i am doing something wrong maybe?
Could it be subluxing in my sleep? Not really sure what it is. I think prof.B thought my toe pain was down to this. sorry gone off topic a little disgussing my sisters problems there.

[jax]

Cinders,

That is terrible thing to happen to your sister. I hope she can get some help
for it to improve the situation. Have you been able to have your shoulders
asessed by physio at all? Mine seem to sublux and move out of place
all the time just on doing anything - more so on the right.

The only thing I can suggest is to try the core strengthening exercises and pilates
(unfortunately anything too over the top like body conditioning classes! makes the joints burn
like hot coals in my case - my joints stiffened up and not so hypermobile anymore!)
but it is important to have that shoulder assessed if it's giving you problems, especially if they're
becoming more severe.

Kind thoughts
Jax
x

[cinders]

Thanks Jax no i have never had my shoulders looked at really. When i was first diagnosed i saw the physio in leeds and she gave me exercises for knees wrists and pelvis and the shoulder blades as they sometimes ached. I saw Prof.B in August and he is referring me back to podiatry for my troublesome toe and he also said the OT to see if they can ease the shoulder and elbow pain with crutches. I phoned the OT and she said that in order to get crutches with the moulded hand bit i need to be referred to physio so i am now waiting for an appointment for the physio & OT on same day and hopefully get the podiatry same day too so as i don't need 3 different trips to leeds. This morning i woke upo after hardly any sleep (mainly due to trying to sleep on my back) and the shoulder was sore and every now and again i got this really deep sharp pain. I must have dozed off again after making a doctors appointment and now it doesn't feel so bad. my husband said i should keep the appointment as it could flare up worse again. don't think doc will think it is much as i can move it fine it just hurts. trying to avoid using any crutches for at least a wk now and hoping foot or knees don't flare up.
Am going to try calling physio to see if i can the appointments rushed through.
Thanks for the advice
Elaine

[cinders]

Back from doctors he had a good move about of my arm which i knew it would move ok just hurts. At least no nerve trapped. said it was arthritic and ligaments which i guess makes sense. Never mentioned subluxing will have to speak to physio about that as not sure if it is that. Told me what exercise to do for now and said the worst thing to do would be to strap it as i need to keep it moving or i'll end up with a frozen shoulder. Hurts more now he has messed about with it but hopefully it will ease off. Need to try and get back to work tomorrow so hoping i can get a better nights sleep and it will ease overnight. Wondering if i could attach tens machine to shoulder only ever used it on my back or shoulder blades.
Elaine

[OzarksUSA]

As for my hips, I discovered when I was 13 that if I swing leg real high while trying not to bend my back much my hip will pop loudly into place. Sometimes it takes a couple of times but then when I do get it after the pain goes away I can walk much better!

Very often I sublux both shoulders and/or dislocate my right shoulder(s) in my sleep. The other day I woke up sleeping on a dislocated shoulder. The only thing I can think of is that the Flexeril at night put me out so good that I didn't wake up even in pain. More often, though, I sleep very carefully. My shoulders, wrists, elbows, knees, ankles, and tops of feet are all propped with loads of pillows, stabilized by braces and ACE bandages, and careful planning and moving as to not dislocate of sublux and of my joints.

Subluxing joints seem to go back in place on their own, while often a dislocation needs help going back in. That is my experience, anyway.

Hope that you are well.

Amy

[SAMMY]

Lou. Unfortunately a woman with my own heart!! I have been trying for years to work out what happened to me!! I know I was young but do remember the pain in my feet. I thought my feet were going to break in half and in those days there was no such thing as a mobile phone so if I was out with my brother he would leave me there and try and find someone to help!! I hated the fuss and learnt to live with it! I am really wondering with this clunking that I do all this without trying!( There is no green to match! ) I clunk all the time! I used to do ballet movements as a work out and when I moved my legs they would clunk all the way round! Is that wrong?? Little miss confused again! SAMMY

[wildfire198]

I get definate crunches and clunks when mine go in or out. When my hip "feels out of place" it seems to make my whole pelvis feel like it's at an angle, it's horrible. Like Sez said I can walk on it or use it (other non-weight bearing limbs) but it is sore and doesn't feel right. Think I'm only subluxing at the moment but I'm sure a proper full dislocation will freak me out.

I've got that problem currently *_*. It's driving me mad and any GP I see doesn't get it when I say "it just doesn't feel right" or that it feels twisted. They just fob me off with "oh, it's probably a muscle injury". Apparently, they don't seem to realise that with HMS, you don't have to actually have done anything (or at least not a major injury) for a subluxation to occur! It's really painful, gets worse with exercise but thankfully is better at rest. How do you cope with it?! Sorry for the ranting, but it just feels like this: at the minute and like no medical professional will listen.

I had a subluxated acromio-clavicular joint last year which was a bit freaky - my shoulders (well, actually most of my joints) pop in and out all the time and normally right themselves within a day or two, but this time, my collarbone was sticking out something major and instead of being diagonal, it was horizontal . A few months of physio and pain relief seemed to sort it out. I would say a proper subluxation would be something similar to this, but the 'temporary subluxations' are just like when joints pop in and out in every day life.

[cat]

OMG thanks for this post!!!! so my knee popping out, causing red hot burning pains, then resettling by itself quickly is called a temp sublex atlast its all starting to make some sense

[lil_miffy]

my new physio (who in every other way is fabulous) got me confused about dislocations. he asked if i had had any and i told him i had dislocated both hips, my left knee, my shoulder and my fingers. he said 'actuall dislocations where you needed a surgean to put them back in place, or just sublexations'.
Iv never gone to hopsital with a dislocation/sub before as the lower body ones go back in when i hit the floor and my upper body ones happen so quickly that they too go straight back in. theres only been my knee that has been stuck for a while (20mins) before it went back into place after a good knock.

So have i acutally had dislocations or are they all sublexation unless a dr is needed to put them back in?

cx

[nemonie]

I think for us bendies we can actually completely dislocate a joint but have it "spontaneously reduce" or "reduce" it ourselves with a bit of pushing or pulling or falling over. Whereas a sublux is when the joint in question doesn't go completely out of joint, more kind of pops half out then back in again.
For a non-bendy a dislocation pretty much always requires the intervention of a medical person to force the joint back into place. I think even for physios who profess to understand HMS/EDS, they most often don't fully understand how easy it is for our joints to move out and back in again. I had to actually show my physio how I keep dislocating my hip before he believed me.

[serenity79]

How I sort of explain it to non-bendies that ask about dislocation is that for regular folks it's a trauma getting a dislocation put into place again, but it was usually a trauma that caused the dislocation in the first place. But for us bendies our shoulders (for example) can fall out doing as little as turning over in bed, so we're easy to pop out but we're usually easier to pop back in again.

[Spireite]

The good book by Prof G and R Keer says 'Joint dislocations and subluxations are more common in people with hypermobility. Spontaneous relocation usually occurs, particualarly after the first time. Subsequent dislocations and subluxations often occur with no trauma, and some individuals can sublux and relocate a joint at will with little discomfort.

Hope that helps as stated by the experts and hope I can quote them here.

[Jezabel]

For me, my only subluxing joint was one hip, and when I was trying to describe it to my GP, the only way I could put it was that my hip rolled out of its joint. I know that's not what happens, but it would tend to be quite gradual, like a ball rolling down a slight hill, instead of just going with a pop or clunk
Michelle

This is exactly what I would say - I subluxed my right hip the other day and I just always say that it's 'rolled out of place'. I often do it to my wrists as well. I did start to panic though as it's becoming more frequent and I started to panic that it was going to or had dislocated and that I would have to go to A&E. (i had just got out of the shower at the time.... ) I'm terrified it will start to dislocate and I'll have to manipulate it back in myself!

[lil_miffy]

thats great thanks folks. I did start to wonder if in fact i was just exagerating but i know in myself that iv dislocated something even if it goes back in without me even knowing its happened becuase of how the muscles and ligaments spasms afterwards. I can tell if the joint has sublexated becuase most of the time i just have to click it back into place. Most of the time this is my knucles and elbows and i get fed up of people thinking im just clickng my fingers and get the 'you'l get arthritis if you keep doing that' lecture from complete stangers (so much so that i even included in my care plan for my social worker that i have to do this and that it doesnt help if people lecture me about it or ask me not to do it in front of them-i have to go out of the room to do it in front of mum cos it goes right through her).
Im going to order that book now as i think its going to be an essential tool for me and my physios and other non-hms drs.

I realise now that while dislocations are nothing to us (more of an inconvinience no different from biting your tounge) but to non-bendies they are very horrific and painful experineces. I understand now why people grimace so much and look like they are going to throw up when i explain hms as 'my joints move more than they should so i dislocate joints at least once a day'. I also know now i should be more sympathetic to the non-professional dislocators out there ie normal folk, when they dislocate something. I once got told that i must be very heartless when i reacted to a friend of a freind saying they had dislcated their shoulder with 'you had to take a week off work? my god you must have really milked it'. (It was in a pub after a few drinks and they had been telling everyone that none of us had any idea the pain they went through. It was one of those 'i'v had a more painful injury than you' competitions that healthy people have).

Il order that book now and take it to show my physio. There are a few hms people in hartlepool and i'm hoping that now im getting proper physio at the hospital, more people will be refered and treated properly so it will help others too if i can clear up any misunderstandings that the physios have about the condition.