Right now my rheumy has said that there isn't much you can do to help hypermobile joints other than pain management. She said sometimes physical therapy helps a bit, but isn't sure how much it would help me. The last time I was in PT was last year for my SI joints, although at that time they thought I might have Ankylosing Spondylitis. At first it was fine, I was keeping up w/the exercises the therapist had me doing, and not having increased pain. I was also rowing on our home rowing machine which the PT was a tad worried about, yet said I could continue so long as it didn't make me worse. After about 3-4 wks. (I think, memory fails) I started having quite a bit of pain in my SI joints so the therapist had me stop everything and put me into the pool to just "hang." He was concerned that I had irritated the joints, which would make sense. Every time I tried to do the exercises I had issues again so I haven't done them since.

Now, knowing that I don't have AS, I'm not sure if PT is helpful or hurtful for people who are hypermobile (which they now say I have). Has anyone done it and it helped? Or would you recommend not doing it as it could make things worse?

ARRRRRGGGGHHHH! I just lost a long post...bl**** fingers pressing apple x instead of apple c......arrrrrgggghhhh!!!!

so, short version...
imo
pt/exercise -generally speaking good, cause in normals ligaments hold joints in place, our ligaments lax=muscles need to do work of ligaments, and for that muscles need to be well conditioned.

BUT if pt/ex too demanding, not done in the right way (right muscles used, right posture, not overextending etc) it can be damaging.
so it's v v v important for therapist to CHECK you are doing things right.
with the rower for example- you might have loose shoulders, therefore maybe subluxing shoulders slightly with every pull=seriously aggravating things...

you might have some "bad muscle compensation habits" (set of muscles that are supposed to be doing a move are kind of asleep, and you're using the 'wrong' set of muscles), this usually requires re-educating your body through tiny, tiny, tiny exercises and takes a bl**** long time.

so if pt/exercises 'aggravate', it is a good idea to 'stop' them
BUT then therapist should check WHY and downgrade/change things accordingly.
not just stop 'full-stop'.
that seems a bit 'boom or bust', a vicious cycle of overdoing-underdoing.
(though of course if a joint has been injured by the wrong pt, it will need rest, but that shouldnt stop you exercising other joints/muscles...)
sometimes therapist will need to feel what you are doing to be able to 'see' what you are doing wrong. cause we can do the kind of 'wrong' no normal can do...

if chronic 'faulty pain signalling system' pain is involved you need to go extra 'little' and extra sloooooooow(talking months/years rather than days/weeks)building up. and again if it 'aggravates', take everything down a notch or two or three, rather than stop completely.

core stability is paramount!!!! (and core stability exercises are often very small, often done lying down)there's no point working all the big, outer muscles if the little core muscles arent doing their job of holding things in the right way...

and what I also find helpful is to kind of consider ANY physical activity an 'exercise' and pay the same attention to 'doing it in the right way, using the right muscles/posture'...

but of course I'm far from achieving this all the time ...but it sure helps to try.
xxg
EDShypermob

Kind of what Gila said...Finding a PT that knows about EDS is much easier said than done. I have yet to find one.

I did PT for seven months...which made me worse. So then my geneticist had me stop and yeah...while I'm not dislocating as much I'm in more pain...but that could also be because I have one h*ll of an autoimmune disease.

Soooo I saw an EDS specialist in Baltimore. We're taking it to the pool...provided I don't pass out and drown...and are trying it again. She's also having me do Relaxation PT which means I get massaged, ultrasounded, and deep heated to my little heart's content

While there is a "standard" for EDS...it's very vague and things still have to be highly individualized...so if you can I suggest seeing an EDS specialist.

(EDS Classical and Hypermobility, Chiari/TCS, JRA/SLE = One big mess)