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leahdragonfly
11-22-2009, 11:04 AM
Hi,

Is there anyone here with joint hypermobility syndrome or EhlersDanlos-Hypermobility type?

I have always been extremely flexible (and was a gymnast when young). I have recently started with a new PT for my lumbar and now cervical problems, and she identified that I meet all the criteria for hypermobile joints (I score 9/9 on the Beighton scale, and can still place my hands flat on the floor despite a lumbosacral fusion). Upon reading further, I also have the other criteria for hypermobility syndrome: spondylolisthesis (x2), hernias (x2), susceptible to tendonitis, plantar fasciitis in both feet, thin skin, bruise easily, nearsighted, early-onset arthritis (I am 42). Scoliosis is a common finding also.

Are there any other individuals here with hypermobility? If so, how were you diagnosed?

Pooka1
11-22-2009, 11:19 AM
One of my daughters has a diagnosis of hypermobility but I took it to be a "placeholder" diagnosis for if/when she ever develops the diagnostic criteria for possible emergent Marfans. But I could be wrong about that.

And I think the other twin has whatever the first twin has despite the paperwork not indicating the other has hypermobility.

Neither can touch their toes much less lay their hands flat on the ground (as I can do). But they had other characteristics, enough for the hypermobility diagnosis in one apparently. I assume the geneticist used that same scale as the PT mentioned to you. She certainly had them do a large number of diagnostic flexibility tests. In fact that was the longest medical visit I have ever attended... it was over 2.5 hours as I recall. Two kids but still.

Both my girls have joint pain (hips especially) if they do too much or new physical activity. They are not sporty and never will be.

I would be interested in knowing the long term outcome of hypermobility cases. That is, how many of them go on to be later diagnosed with something else like Ehlers-Danlos or Marfans. If it is most then it is a placeholder diagnosis. If it is few then it is a real syndrome separate and apart from the other syndromes.

I know of a very good rider with Ehlers-Danlos (don't know which type). So it certainly hasn't held her back and may have even helped her in her riding. It's important to be elastic and "through" when trying to get up the levels.

leahdragonfly
11-25-2009, 11:21 PM
Hi Sharon,

What type of flexibility tests did they have your daughters do?

Happy Thanksgiving!

Pooka1
11-27-2009, 11:53 AM
Happy (belated) Thanksgiving to you too!

I don't really remember much except trying to touch the floor with straight knees.

I think there were ones involving the thumb bending a certain way and bending the other fingers another way.

I found this online which sounds familiar to what the geneticist asked my girls to do...

http://www.arthritis.co.za/hypermobile.html

There were also other things that related to angles of certain joints as opposed to bending.

It's hard to remember. The main thing I remember is how neither of them could get within 8 inches of touching their toes and yet still the hypermobility diagnosis. That why I think in their case it might be a placeholder. I think they should have been diagnosed with Marfans habitus, something where they definitely fit the diagnosis.

This site (Box 2) compares and contrasts various differential diagnoses with Marfans and mentions Ehlers-Danlos...

http://www.mja.com.au/public/issues/184_12_190606/sum10907_fm.html

As you can see, there is a boatload of related syndrome though they are distinct form one another for various reasons.