Joint hypermobility disorders :
Questions to all odd bodds!! :) - - Posted by Femin3m (Femin3m), 18 October 2003
I have some questions for you
How Do you deal with pain??
Is It Unusuall to dislocate in you sleep??
What is subluxing??
Do most of have to have Op's done??
Do the ones that dont have Op's done have to have braces on??
Kristy 
Posted by Lizzie (Lizzie - UK), 18 October 2003
Hi Kristy
I am thankful that I have never dislocated anything in my life, even though I've been diagnosed with HMS.
I believe that some people have been able to dislocate parts of their body whislt they have been asleep.
Subluxation means a partial dislocation, eg, when a patella (kneecap) is maltracking and comes away slightly from the trochlea groove in which is usually is positioned to glide up and down.
Some of us have had lots of surgeries, others have had one or two at most and then there are others who have not had surgery.
The ones that don't and even the ones that you have surgery have worn braces. It really depends on what is wrong with them.
To finally finish answering your questions with regard do we deal with pain - well I take 16 painkillers per day and then I also take lots of homeopathic ones too.
I am also using ice or heat treatment, having PT and I am seeing a Pain Management Nurse at a Pain Management Clinic at a local hospital.
I hope that I have managed to help you a wee bit - can I suggest that you go onto the google search engine and also look for the hypermobility syndrome association website and the Ehlers-Danlos syndrome UK website that will help you.
Lots of love
Lizzie
Posted by Shazinoz (Shazinoz), 25 October 2003
Kristy,
I am one of the ones here with H-EDS (the Hypermobility (old type 3) form of Ehlers Danlos Syndrome.
In answer to your questions above (sorry this is late by the way)
How Do you deal with pain?? Personally i deal with my pain in MANY different ways, i do take a LOT of medications (I take Vioxx, Neurontin, Adalat, MsContin (60-120mg in the morning and 100-200mg in the evening), Codiene Linctus, and MORE. I also find heat helpfula nd find that HOT baths help me (if I can get in and out of the bath), HOT spa's help,TENS amchine help (SOMETIMES) Hot packs etc, [I cannot use Ice as I have RSD as well as EDS and ICe burns me SEVERELY and can cause RSD to spread as well], I also find that distraction can help (i.e getting your mind off onto soomething else), rest, bracing, strapping (NOT tape as I am allergic), I also find many other things help like pacing myself (when I can) so that I don't put undue stress on my body.
Is It Unusuall to dislocate in you sleep?? NOT AT ALL, I do this VERY often as when you sleep your body totally relaxes and this is when we are at our most vulnerable, as we cannot protect ourselves. Believe it or not when yuare awake you are unconsiously "holding your joints together" and without thinking about it you are protecting them and making sure you don't hyperextend them and so on, but when you are asleep you CANNOT do that and then you are MORE likely to subux or dislocate.
What is subluxing?? Subluxing is simply a partial dislocation, the joint does NOT go all the way out, it usually slips back in by itself and you can usually tell the difference as a full disloation usually needs to be "helped" back into the socket and a subluxation does back by iteslf (NOT always on either account though). So basically a sublux is just a partial dislocation.
Do most of have to have Op's done?? Doctors are reluctant to operate on those with HMS/EDS and other Connective Tissue disorders as we do NOT heal normally and we can actually end up worse than before the surgery (surgery is usually the LAST resort and a lot of the time the surgery is actully replacements or fusions).
Do the ones that dont have Op's done have to have braces on?? I RELY on my brace to simply live life (if I was to wear ALL of my braces at one time, there would barely be a joint without some kind of support (my Exoskeleton <LOL> or Robocop suit <he he>). basically the role of braces in the Hypermobile/HMS/EDS'er is to take over what our bodies are unable to do for themselves, as our ligaments are not able to hold our joints in the correct places (i.e we can move our joints TO far), we use them to STOP our joints hyperextending (going to FAR) and to support already injured joints, and even to help us control some of our pain.
I hope this helps you at LEAST a LITTLE and if you need further help or Information then PLEASE email me on shazzinoz@hotmail.com. I have HEAPS of web sites of HMS, EDS, Marfans, Osteogenesis imperfecta and others. And also on Hypermobility and aquired hypermobility.
Good Luck
Sharon
Posted by Liz (Liz), 27 October 2003
How do you deal with pain? - Lately it's just been ibuprofen or Advil, and suck it up. 
My body doesn't deal well with painkillers, otherwise I'd probably have a bottle onhand for emergencies. 
Is it unusual to dislocate in your sleep? I've never really dislocated anything while awake (had maltracking problems forever though), but I'm pretty sure I've dislocated my knee and perhaps my shoulder in my sleep. There's been a few times that I've woken up with EXTREME pain and been in pain for days afterwards...
Do most have to have Op's done? I haven't had an operation yet, but my knee is not doing real well lately so I may have to go in for a scope. I've been putting it off for a long time, but I recently got married and I know that if I want to be able to play and have quality time with my kids I'll need to do something.
Do the ones that dont have Op's done have to have braces on??
I have a brace for my left knee, but I hate wearing it. I usually only wear it when I know I'll be doing high-activity or lots of stair climbing... helping someone move, something like that. I don't even wear it to the gym anymore, because it doesn't seem to make THAT much difference pain-wise. If anything the swelling gets kinda funny when I'm wearing it, and when I take it off it swells even worse. It's Lycra though... I'm thinking of shelling out some cash for a better, hinged brace.
We're here for you!! The forum has been pretty slow lately, but I still read regularly. If you have more questions just ask!
Liz
Updated Sat Nov 21 2009
