question about EDS

[Kwstar1]

I am 19 yrs old and looking into  EDS type 3 (hyper mobile type) as my neurologist suggested to get checked out for it because Of my severe scoliosis and joint pain. The symptoms all match up pretty well except I don't get dislocations ( i don't think) I can pop my left hip out but the dr said it was something with the IT band I have been able to do this since like age 9. also I was always able to do weird things other kids couldn't like turning my leg around, but since my back got worse Ive gotten less flexible. My question is is it possible to have this form of EDS even if you can't do all of the things for the test (ex: can't touch ground anymore, and my thumb doesn't quite touch my arm there is about a cm in-between. but I can do other odd things like turning my leg around and pushing fingers back past 90 degrees? Am also being tested for chiari and some auto immune disorders, Ive heard they can appear with EDS. thanks for listening
-Kristin

[Kwstar1]

oh and don't worry about keeping everything straight you are a big help!!!

[Kwstar1]

selmaS,

I am getting scoliosis fusion surgery ( I am being fused from t3 to t12). My ortho dr. doesn't really know much about EDS so thats why it is recommended I see a rheumalogist. Its just theses last 3 weeks before surgery I am so i=overwhelmed with other tests that we can't get in until after, so maybe I will just have to take healing slower...


thanks for answering :D

[lynnbrook177]

I get the fatigue from lifting, or doing any housework, like scrubbing floors or sanding a chair.  I have Chiari but I don't know if I have EDS, I doubt it, but am not counting it out.  

Is the lifting issue due to EDS, or Chiari, or both, possibly?

[selmaS]

  what surgery r u having done? sorry but I can not keep all this straight....r u having the chiari decompression or something else done? What ever u r having done u should mention it  to the surgeon as it is a possibility that u may have EDS as it can affect how u feel and heal post op.....

I do get just like u said with lifting so I keep what I lift to a minimum....lbs wise and how often I lift other things of weight too as it all seems to affect me.

[Kwstar1]

thanks for your replies, i have another concern so today in pt my pt wanted to start doing some strengthening excersises before my surgery. They were not very intense excersises so I figured ok this will be fine. Well yesterday my dog got hurt and I had to carry him (he's about 50 pounds) into the vets not very far but my arm (the one that hurts the left one) started hurting a lot more and it aggravated the nerve pain too. So today although it still hurt (it always does) i didn't refuse but after I was done with the excersises I felt like I couldn't even lift my arms up to drink out of a glass of water, they are sooooooo tired and weak feeling, just typing this is extremely difficult, Im not sure what to do because I need to strengthen them but it is just so exhausting, also my shoulders/upper back just feel really tired. Have you guys ever experienced this with your EDS and if so what do you do???

thanks

i can't get into a rhumatalogist until after my surgery

[actressmouse]

Yes...usually the genetic doc will ask if you can do the things on the Beighton scale OR will ask if you COULD EVER do them in the past.  I scored a 7/9 on the Beighton, but could also turn my fingers around.  I also have Chiari and a Retroflexed Odontoid Process with cranial-cervical instability.  My connective tissue disorder is still up in the air...possibly a rare form of Stickler's Syndrome or a weird presentation of EDS type 3.  

[selmaS]

  Hi, I was never able to do most of what u said as a child but I had a 7/9 on the Beighton Scale which is used to determine hypermobility....then u do need to go to a geneticist to see what type u have.

We do have a EDS group here on MedHelp with some helpful videos-http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc