Jump to content



Recommended Posts

hi all-

i've recently been told for the first time that i appear to be hypermobile, possibly have EDS, etc. it's never come up in the past b/c docs have asked me if i am hypermobile & i've said no as i didn't realize i was...i've always been this way. the PT i just started seeing though who has some knowledge of autonomic issues actually did a bunch of tests as a part of my eval & said i have a lot of the markers. i've perused various links & know the EDS basics but my question is this...in the sort term, is there any reason/merit to my getting a more definitive diagnosis one way or the other. granted i'm always interested to learn more about the whys of my body's craziness, but unless i'm missing something there's nothing drastic that's going to occur if i have this new diagnosis to add to my list. am i on the right page here? any reason why i can't just let this go for now & mention it to any relevant docs as i see them in due course?



Link to comment
Share on other sites

Steph, there is not a genetic test yet available for the bulk of EDS patients who have the hypermobility type. It's diagnosed via a combination of the Beighton scale and clinical manifestations such as easy bruising, poor wound healing, history of dislocatons, etc.

I have EDSIII aka hypermobility type. I fit the Beighton criteria with at least 5 of 8 total points, and I have the wound healing issues, particularly with bone healing, lots of bruising (I don't know where they come from), and I have dislocated my jaw, partially dislocated my knees/hips, dislocated toes, fingers.

for me, EDS poses some obstacles, mostly in the realm of joint and nerve pain. Today happens to be a very bad day in that regard. I did a short Pilates upper body workout yesterday, but I set off spasms somehow, and today I'm having nerve pain shooting through my bicep and into my finger tips (feels like someone driving nails into the top of my fingernail). The nerve pain is a result of the instability of my spinal joints--they move about and my nerves then get cranky.

Long term, EDS patients have to be careful to keep the supporting muscle structures strong to stabilize joints, be aware of body mechanics. I have to keep in contact with my pain management and neurology docs, as they're the ones helping me manage the pain and nerve issues. Also, I keep up with my GI doc, as for me, GI symptoms are common for EDS patients.

I recently joined EDNF's forum--it's informative, but keep in mind it's not quite as active as here as it's available only to paying members.


Link to comment
Share on other sites

thanks for the responses...one one hand i can say "yep, that's me" but on the other not at all. the PT says i have 5 of the 9 markers, i have moderate bruising/bleeding issues, i had MAJOR problems with traction several years back, have sprained my ankles more times than i can count & have problems with wound-healing skin-wise. but on the other hand i had an uneventful recovery from cervical spine surgery a few years ago and while i have some weird pains here & there i don't consider them my primary issue health wise, i.e. i've hardly mentioned them to docs at all. i actually went for this PT eval at the suggestion of an autonomic doc who has seen some correlations between movement restrictions & autonomic dysfunction (&/or CFS). he knows this PT well so thought it would be worth my while to have the eval before i move to know if it would be something worth pursuing at my new locale. other than as expected around my cervical fusion though no restrictions for me. and being told i have horrible posture. :unsure: so...that's how the hypermobility thing came up. he was actually looking for restrictions and found the opposite...in an odd way it was a bit funny.

so...i think for now i'll just keep it in mind and deal with it as the need arises...

thanks again,


Link to comment
Share on other sites

I don't know if a diagnosis is of any particular benefit other than satisfying a curious mind. I havetype III hypermobile type and at least I kow the 'growing pains' I 've had for years weren't in my head, or even growing pains at all! It's satisfying to know there is justification for my pain.

but simultaneously frustrating because there's no real cure for it :)

You sound like a bendy type. did you know the bendiness lessens with age in many people? think back to when you were a kid- were you bendier then? Did you do gymnastics or amuse your friends by putting your body into weird positions?

what about pulling muscles out of place, or joints? I know you said ankles, and that's a big one.

EDS can form a big part of the jigsaw in explaining some peoples' dysautonomia. Someone else more clued up than me can comment next, but I think I'm right in saying most people with POTS are also hypermobile? At least that's what my Professor in London (Prof Grahame, an absolutely adorable fellow) told me.

Keep us posted with how you get on B)

Link to comment
Share on other sites

thanks p -

i too have a curious mind that always likes to be satisfied, but this one is going to be put on the back burner for awhile....i think my mind is already on overload :D

other than my ankles i haven't had many joint/ dislocation issues that i know of. i did have wrist problems...carpel tunnel like...that we attributed to cello & piano playing amongst other things.

i've always been flexible but nothing over the top...no grand stunts although during stretches for sports teams i was on over the years i always got some looks/comments about how far i could stretch. for me it was just what i needed to do to actually feel a strech!

aside from those with EDS i've not heard of POTS-folk being hypermobile, but i obviously don't know all. i do find the potential EDS connection very interesting though in terms of vessels, connective tissues, POTS/NCS etiology, etc...

i find so much of this health stuff very interesting....i just wish it weren't always going on in my body!!!

thanks for the feedback,


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...