Hello all

I've only been diagnosed with EDS for less than three months - I'm more than familiar with the pain and complications of the condition, but I'm so lost when it comes to treatment!

I was dx-ed by a rheumy - he told me that he was 1000% sure I have EDS III, but that unless something else were to come up he didn't want to see me again. I've seen an ortho for a long-standing problem with my foot, but he said there was nothing broken to be fixed so he couldn't do anything for me. MY PCP is wonderful but admitted I am his first EDS patient, so he doesn't know a lot about the condition.

Since the aforementioned foot injury six months ago I've gone from a relatively healthy 26 year old to a mobility challenged woman who walks like a 90 year old (when I CAN walk, that is). My knees, hips, and ankles have deteriorated dramatically. I have some generic neoprene braces but I don't think they are enough.

I'd like to see someone who can take a look at the function (or rather, DISfunction) of my joints and help me to get the aids I need to be able to walk and move around. I don't think there is anything else to be done, but I'd like a medical professional to take a look and see if there is, anyway.

Who should I see????

My suggestions would be to see an orthotist (this is a medical professional who specialises in Braces, making/ fitting etc), those neoprene ones really don't offer enough support for unstable joints...

There are braces that you can use called HKAFO's (which brace your ENTIRE legs from waist to feet if needed, this supports your hip(s), Knee(s), Ankles(s) etc)...

You PCP should be able to refer you to one...

Depending on where you are, I know that some of the USA members here have a special Dr who works in Rehab type stuff and they have found they are very helpful...

You may also what to look into some kind of (or more than one kind of) mobility aid - crutches, cane, wheelchair etc to make getting out and about easier and less painful...

Pain control is another thing you will probably be wanting and either you PCP or a Pain Management Dr is good for this (I personally say if your PCP is willing to prescribe the pain meds you need then stick with him/her - but realise some do get scared when you start needing narcotic med's etc to help with your pain)...

Sorry i couldn't be of much help but these are the things I can think of that might be of use to you...

Good Luck with getting the help you need....

hello there!

"My knees, hips, and ankles have deteriorated dramatically."

if this means you have dramatically more subluxes/dislocations- then braces and physiotherapy (strengthening the muscles around loose joints can help lessen subluxes/dislocs) are v helpful
(if you're not sure on this a physiatrist, preferably one who knows about EDS, will be able to tell you how loose your joints are)

if however this means you "just"( ) have a dramatic increase in how often/how much pain you are getting... you might be getting 'chronic pain' (which can be due to pain signalling system going haywire=signalling pain even if there is nothing 'structurally' wrong/there are no current injuries)
then you really need to look into "chronic pain management techniques" like 'pacing' too-
physio(this will have to be 'paced' as well!!!!) and braces can still help, make pain somewhat less... but it wont always make the pain go away...

BUT- when I got hit by chronic pain allover and cfs (due to EDS) I also 'walked'...shuffled actually... like an ill 90 yr old...
these days, despite the pain still being there and I think mostly still being the same (v difficult to tell after 10yrs of it- but at least the cfs is gone!)... with lots of v tedious 'pacing', life style changes, regular exercises I can once again walk normally!!!! and walk loads and loads more than then!!!!

with chronic pain the "pain postures" we naturally adopt when we are hurt/are in pain- are NOT helpful at all- in fact they make the pain worse as it throws things out of line...

so I'd say firstly get thee to a physiatrist- have them check your joints/your posture/how you do things like walk/sit /pick up things , get them to check your muscles (which ones are weak/not working, which ones are too tight/overworked) and get some core stability exercises too (or start pilates), they are all round good.

(and of course most of us have both types of pain- chronic and frequent injury...)
fun...
good luck with this rollercoaster ride that pity enough often is a v lone/lonely one as so many med bods just know sooooo little about it!!!
I would have gone crazy if I hadnt had the support and understanding of several eds/hms forums...
xxg

Thanks for the advice, everyone. I have an appointment with an orthotist next Wednesday. I'm a bit afraid of doing much more because my physical therapist started me on an evaluation program to see what my limitations are, and I failed out after a walk around the building and five wall squats. I couldn't walk for three days afterward.

Oh, I also just got a small wheelchair to help when I'm out of spoons and can't move around.

One thing I'm a little unclear of (one of many, I'm sure) is how to answer the question of subluxation/dislocation. I don't think I've ever truly dislocated anything - I think I'd remember something traumatic like that - but I'm not sure about the subluxation thing. I'll often have to squirm around to get various joints to pop, and I'll feel things shifting inside the joint. Sometimes my entire pelvis will shift half an inch when I pop my hip. Once it does pop it hurts but has a weird sense of relief, too. I don't know if this is a subluxation because I don't always have a whole lot of pain beforehand, usually it's a sense of discomfort and pressure, with occasional pain. Am I subluxing?

Thanks so much to all of you, I have no idea what I would do without your advice!! It's nice to finally know people who understand what it's like to live in my skin.

Sounds like it could be a subluxation or a dislocation...

For an EDS'er a dislocation is NOT necessarily a traumatic event...

The very basic difference between a dislocation and a subluxation is that a subluxation is when the joint comes part way out (and usually goes back in by itself pretty quickly (not always but usually) and a dislocation is when the joint comes fully out, this usauuly needs you (or someone else) to wriggle and/ or push etc it to get it back in...

It soulds like if you are having to wiggle and squirm and then feel a "clunk" etc that it could be either a subluxation or a dislocation but if you have to do it to relieve a feeling it is more likely a dislocation...

If you look at the joint, does it look "wrong" have dips and bumps where they shouldn't be??? If so it is more likely a dislocation (but could also be a subluxation) as I said above the difference is to how much of the joint goes "out" if it is fully out then it is a dislocation (also medically known as a luxation) and if it only part way out it is a subluxation (which is basically a sub/ partial luxation/dislocation)...

In EDS'er dislocations and subluxations can be either painless or painful, it depends on the person, the joint, the precipitating force/ injury, the severity, how loose the joint it, how often it has done it int he past, if something tears etc during, how long it is out, how hard it is to get back in and a whole lot of other things.

Pain alone is NOT a marker for whether or not it is a dislocation, subluxation or what ever...

Hope this helps at least a little...

Okay, that clears up some things - I assumed that dislocations/subluxations were ALWAYS traumatic and very painful, but what you said makes sense. If it's happened a lot I guess the joint would "get used to" slipping out.

As far as I know the joints never look "wrong" and I've never had the super flexibility of a limb that's been completely out of socket but it's kinda hard to tell with my hip (the one that does it the most). From what you described it sounds like I sublux a lot more than I thought. Strangely, that almost makes me feel better because I was starting to wonder if I was even a true EDSer. Some of my manifestations are so weird I've never encountered anyone who's experienced the same things.

Many, many thanks for answering all my ignorant, newbie questions!!

I'm another 'just subluxer"- mostly... my shoulders might actually do the full thing by now- waiting to see shoulder specialist atm-

shoulder subluxes dont hurt me at all- physio v gently showed me "now it's in- now it's out", I didnt feel anything...but shoulders are the most easily dislocating joint in normies too... yet when for example my thumb does it... a flood of swear words (oh for a laugh... on the bbc news site they had an article about research that showed that swearing indeed helps with pain as it gets the fight or flight reaction going=adrenaline flowing )

EDS/HMS do indeed bring a host of 'odd' probs... and many of them NOT musculo sceletal...
xxg

Hee. I was about to offer the same reply. My EDS doc held my elbow in one hand and my shoulder in the other and, just like you, I didn't feel anything when he subluxed it gently. My elbows hurt slightly when they sublux and make a loud snap when they go back into place. My hips clunk loudly when they sublux but don't hurt much unless I use them (heh). Some of the subluxes in my ankles and feet hurt quite a bit, others not at all. My hands always hurt when something slips, but it's not awful; the pain I get at night when my hands are resting is often worse.

Dios: I've found that all sorts of people can help. I second the recommendation to a physiatrist. A hypermobile-aware physical therapist is an absolute blessing if you can find one. I see another physical therapist who specializes in making custom orthotic insoles. Since I got my first pair in 2003, I never go out without them. (I don't know about your foot injury. My orthotics help with my very damaged ankles and plantar fasciitis.) I also use cold packs, hot packs, and BioFreeze spray to help with pain.

Do you know what's causing your hip pain? Mine turned out to be acetabular dysplasia. You might want to get your hips checked by a doctor.

Good luck!

Speaking as an HMSer, specialist PT is key. Wall squats with hypermobility = eek!