Has anyone ever heard of EDS III/H being dignaosed without skin, issues or subluxatiions/dislocations? I'm come across a boy who was dx with fibro but a new doc now says it's EDS III and not fibro, but although he's hypermobile, he doesn't seem to have any other symptoms that could not be down to Fibro, not even subluxations.

Plus, EDS of any kind isn't something you grow out of is it?

No, it isn't. How old is this boy? Children do tend to be a bit more loose-ligamented, in general, than adults and can grow out of that, but true EDS cannot be grown out of. If this boy is still pretty young, like pre-puberty, he may just be very flexible and grow out of it. I used to type orthopedics notes, and it's actually quite common for children to have loose ligaments early on but grow out of it later - usually by the time they reach skeletal maturity (when the growth plates close), which for boys is around age 14 or 15.

It could be that he might have a very mild form of EDS III, and in that case, he would not grow out of that.

I'm not sure I know of anyone with EDS who hasn't at least has some subluxations. I don't have that much skin hyper-extensibility and I know you don't have to with EDS III, but my skin does tear easily, and I can remember having subluxations and dislocations as early as age 3 (one of my first memories is dislocating the big joint of my thumb - OUCH!).

He really should see a geneticist, because that's really the only kind of doctor that can make that diagnosis a firm one, and the geneticist would (or should) at least consult with a cardiologist to check for vascular involvement, since the vascular problems with EDS can be invisible and without symptoms until the person is in an emergency situation (aortic rupture, dissection, or aneurysm, etc).

~Ioma

i have minimal skin issues, but we know its EDS cause of family history. i bruise and cut easily but my skin is not very stretchy...

My sister has hardly any skin hyperextensibility, but bruises very easily. While she heals within normal time (mostly) and well...there were those few times she didn't like her wisdom teeth and her biopsies.

Me...well...yeeeeeah. I don't even have EDS III so I'm not much help.

But i too am wondering his age as young dudes are flexible too...and a big clue in my case was that i was getting MORE flexible as i got older.

More info Linz?

Skin involvement is one of the key things that helps determine whether a patient is "just hypermobile" or if it is EDS. If he is not having any dislocations or even minor subluxes and has no skin involvement, I HIGHLY doubt that it is EDS. It is more likely that it is general hypermobility instead. And no, EDS cannot be grown out of. I was told that incorrectly when I was first diagnosed, but found out a few years later that that was impossible. It is a genetic defect and since you can't change your genetics.... it stays with you your whole life and more often than not, gets worse over time.

I know peops that dont have the skin involvement, dont dislocate, hardly sublux and they have a dx of "benign joint hypermobility syndrome equivalent to EDShypermobility type".
(same dx as mine even though I do have the skin involvement)
and a lot of peops didnt always sublux or dislocate.

our main prof thinks that HMS and EDShypermob are 'practically' the same-the similarities being much bigger than the way they differ; HMS and EDShypermob being much more 'the same' than EDShypermob and vascular EDS. and as the exact 'molecular cause/difference' isnt confirmed/known in the hypermobility type, it makes 'more sense' to regard/treat them as 'the same'.
in time they might even find that 'molecularly' EDSers that develop autonomic dysfunction for example differ from ones that dont....

of course you dont grow out of having EDS...but you might 'grow out' of some of the probs.
I had all the classic early signs(no crawling, late walking,extremely clumsy), was physically 'lazy', a real scaredy cat...but from about 10 till my late thirties I was 'healthy like a normie'
(meaning only having sporadic probs that normies can have too, though with knowing about EDS a lot of those probs were most likely related)

so to me it sounds likely that the poor little mite has EDS AND Fibro.
and I sure hope they're planning on some treatment/intervention, cause if things have gotten 'this' bad I doubt he'll just 'grow out of it' by himself.

gila, doesn't that first example only make sense in someone without fibro? I mean, if you have Fibro pain, then you can fit the Brighton criteria for BJHS without skin involvement or subluxs, but surely that's a kind of error as the pain doesn't have to be related to hypermobility?

I know Grahame thinks they're basically the same and I think he's right as I only have a Beighton of 1, no tricks, but I sublux and have some skin issues, so I'm definitely on the same scale, just nearer the normal than most EDSers on here. I only say I have HMS to mean that I'm a lot milder than people with EDS-H. But.....they're the same because the symptoms are the same only milder. So if the symptoms are NOT the same, what then? Also, if they are the same, doesn't that mean HMS can have family history too?

In this case (he's 13 I think), there is some unsuccessful physio, no medications, no supports and no acknowledgement from the medical team that Fibro could be a factor. Very little treatment other than psycological. Which all seems very dodgy to me. Surely if he really did have EDS they would have to be helping him and preparing at least his family for the fact this could get worse or at least not go away? Giving him no practical help and saying he can grow out of it isn't useful.

The doctors are saying he couldn't have Fibro b/c kids can grow out of chronic pain issues and then it wouldn't be fibro - which is wrong on so many counts! Apparently they never dx a child with fibro on principle.

I guess the thinking is that seeing that he is hypermobile, it's likely that the chronic (due to faulty pain messaging system) pain is due to the hypermobility=hypermobility syndrome, that the hm is the cause of the 'fibro'...????

if fibro is an "exclusion" dx then I guess hypermobility has to be excluded for it being 'fibro only'...???
cause they are thinking that indeed hms is probably the underlying/initial 'cause' in fibromites/ cfsers/pots that show hypermobility...

but as hms/eds is also an 'exclusion' dx...how do they decide it's 'only' hms/eds...or hms/eds with secondary fibro, cfs...????? me clueless...

where the dividing line between hms pain and fibro pain is....I havent got a clue either...???

re subluxes-how does he know that he doesnt sublux??
has he had a v comprehensive, gentle check of all his joints or just the beighton checks?
as it seems not all subluxes have to be painful...5yrs after my hms/eds dx physio dxed subluxing shoulders...doesnt hurt at all when they do...???
also on my initial prof g appt he asked about dislocs/subluxes...I said no...cause I didnt know about subluxes...I thought the short sharp pains in certain joints with certain movement that sometimes but not always happen were just part of the overall pain...(now I know, thanks to physios and comparison with other hmsers, my fingers, wrists, shoulders, at least one knee and one hip and ankles do sublux...sometimes v painfully...sometimes painfree..)...
but yep my main prob was/is the chronic non-injury pain, so I initially got no physio, no meds, just a pain management course with a v heavy psych bias...
guess the thinking is "we cant cure, cant make the chronic pain go away...so all we can do is try peops help cope/manage/deal with it"....

imo the no physio, no... no ... is probably more due to our ailing NHS than the actual dx...
cause despite subluxes, overtight big muscles, trp's...I've only been able to ever get 6x 20 mins core stability physio (which I found helping a bit with the 'chronic pain', so maybe he could ask for it???) and 6x 20 mins for shoulders cause I was getting numbness and interrupted bloodflow...in 5yrs of being dxed... and look at lilwatchergirl, in a wheelchair, prof thinks specialised physio could get her out of there, can she get physio on the NHS...???....
(and my numbness/bloodflow prob was 'cured' by one sess of trp release massage and I got exercises to try and avoid trp coming back...but it is back now and now I'm supposed to find and manipulate the trp myself...

...and never mind I might have more trps....)

and yep hm usually is familial, though can occur 'spontaneously', and yes it's a connective tissue disorder...
though there might be a type of non aquired hypermobility that's not a ctdo...that's when hypermobility is solely due to too shallow bone sockets...but quite a few hms/edsers have overstretchy ligaments AND shallow sockets...?????...

'mildness of symptoms' as far as I understand has got nothing to do with whether it's 'hms or eds'...I 'was' an EDSer with v little/mild 'symptoms' till my late thirties(no constant pain, no constant tiredness, a sublux every 1/2year or so...), my family are all hypermobile and have the unusual skin, but I'm the only one with constant probs...an 'only hms' (no skin involvement) friend of mine has had all sorts of ongoing probs since her early years...

and due to the many slightly varying manifestations, med bods now start calling it not Hypermobility Syndrome or Ehlers Danlos Syndrome, but Hypermobility or Ehlers Danlos SyndromeS.

still confused?...so am I , but I think we're in the good company of many(if not all) med bods...

Linz that's fishy to me...

If he had EDS/HMS yeah they'd do physio EARLY to try to prevent further deterioration but they don't do anything to help the pain etc?

When I was 13 i didn't seriously subluxate...i did sometimes but it didn't hurt and was barely noticable...it was around the age I began subulxating more though...and began to have more migraines etc. Darn that puberty!!!!

Anyway...it's just odd...for me to be diagnosed I had to see a geneticist where I did the Beighton stuff and then gave him a show and then we looked at my skin, eyes, etc...went through the WHOLE FAMILY HISTORY which shows EDS started most likely with my mom (way to go Mom lol)

My sis and mom also started subluxating more at 13...i began to be more symptomatic fibro/dysaut wise at age 11...started a little earlier because my EDS is more pronounced than theirs.

By what I've heard of Prof. Grahmme, I don't think we'd get along all that well lol. I think HMS and EDS III are different (HMS - BJH/GHS)

I was told for years that i had HMS/BJH but once it went downhill and given my skin/vascular involvement it changed to EDS.

Blah...that poor kid

I'm male and without any known skin issues. The explanation seems straightforward:
In male skin, the dermis is richer and thicker in collagen, and the epidermis of male skin is oilier.

I have had a few subluxations and dislocations, but I don't think the doctor who diagnosed me is aware of that.

My 11 yo son has been dx with HMS and most likely is EDS III...currently waiting for appointment at Univ of WA Center for Eval. He has the hypermobility everywhere, easily dislocates, hard to heal from bruising, joint swelling from every-day activity, joint pain/ache regularly and has to be very careful about activities. This is where the combo occurs for these 2.
I'm not sure the boy has fibro, I would suspect the EDS even w/o skin flexibility. It took us 2 years to finally get a referral to Seattle's Childrens Hospital (live in E. WA) and that took a real fight. I hope his parents are able to find a knowledgable doc to dx and obtain good tx.

My son is currently on a 504 educ plan for P.E., now gets transportation in the a.m. (can't walk to school without swelling or pain) and only live 5 blks from Middle school), and is in weekly P.T. for the next 3-6 months for strength and stabilization.

Its really hard to properly dx this kind of situation because of the age and the lack of response from some docs to recognize something as more serious than he thinks...good luck

Sherri

Okay, so it isnt MANDATORY to have skin hyperextendability to have EDS? B/c my rheumy said that since my skin wasnt so stretchy, i probably had GHS instead-but i bruise SOOO easily and am not anemic & my bruises stay forever & even after the bruise itself goes away, the area still hurts for a bit-i was unofficially dx w/EDS (a mild form) by my PT-now my rheumy is getting "technical" which is fine, but i kinda accepted eds as my dx, so thought i had an ans, and feel like the rug got pulled out from under me & may have to get used to a new dx. Thanks for this post!

I looked up hypermobility on the net and found the following - HOPE IT HELPS (and I hope it is OK for me to post here )

There is more than one kind of hypermobility.

There is aquired hypermbility (such as gymnasts ad ballerinas end up with from training there bodies to be more flexible) and there is

inherent hypermobility, (i.e. what you are born with).

And from what I read EDS-H is though by some to be the same as HMS, only milder...

Shazinoz

Flip and switch...it's the other way around. I was diagnosed with HMS at 16 and changed over to EDS at 19 because my probs were too SEVERE to be HMS.

oops...

<LOL> Thats what I get for not reading things properly while researching the net isn't it <LOL>

Sorry also for any typo's (i am currntly in a thumb spica (scaphoid) cast after hurting my thumb (got it caught in a cushion and twisted funny and my x-rays showed long term damage and sprains and things so the dr wants to cast it to let it rest (as I need this arm as my right one is cactus from the RSD etc)...