Looking for others with a EDS Dx-

[selmaS]

Hi....I am looking for others that may share the Dx of EDS- Ehlers Danlos Syndrome.

I was Dx with this last week and was wondering what type of issues u have as a result and the treatments u may hve had.

I also have chiari malformation, cervical spinal stinosis,DDD,tethered cord,cranial instability, mild scoliosis and EDS.
And not sure if it's related to ne of the above, but I also have Hashimoto's thyroisitis and a hiatal hernia with acid reflux.
I believe I got them all....oh yeah fibromyalgia.

[sofa weight]

My sister sees a cardiologist for the orthostatic hypotension and tachycardia. The doctor in Toledo is a cardiologist. Funny thing as per rheumatologists. My local one just gave me the boot unless something comes up that he can treat. I guess he figured that I have enough other doctors helping me that h is not needed. He said there is no treatment for EDS, so there is nothing for him to do.
As for the folks discussing the pool. I go to the pool a lot these days which is funny because I really don't like swimming or pools. However, the pool at the physical rehab place is only 4 feet deep and is kept at 95 degrees. It really feels good to move around in there. I can move in there much better than I can on land. It's ll good until I have to get out of the pool and then gravity hits hard. I'm not overweight at all, but it sure feels like I am when I try to walk around after having been weightless in the pool.

[selmaS]

Hi...as a matter of fact my sister has a pool and I can't get in it bcuz of the ladder...she asked my DH to build steps so it would be easier for me and she said it would be good for me  especially since I am going for surgery.....

So I am planning on trying that and my NL suggested the Feldenkrais Method.....I got the book, but not comprehending it right now....but it is also highly recommended by my DD!!...lol.....

Thank you for sharing

"selma"

[AireScottie]

I can't do PT for EDS either at this point because I pass out so easily and have terrible pain with repetitive joint movement.  I'm seeing rheumatologist in June at Cleveland Clinic afor the first time and I'll let you know if she has any good suggestions for therapy, joint bracing, etc.  Do you think you can spend any time in a pool?  That's a good way to exercise without pressure on the joints.

[selmaS]

Thank you...I wondered bcuz it was a rheumitoid dr that dx my chiari and then dropped me from his patient list bcuz chiari is a neuro problem.

I wonder how he missed it.

"selma"

[AireScottie]

Rheumatologists are the ones who most often treat EDS, although not all of them have familiarity with it.  Geneticists also deal with diagnosing it, but don't get into the joint issues as much.

[selmaS]

Hi...I am not really sure if my issues r dysautonomia...I do have chiari, tethered cord, DDD, cervical spinal stinosis, cranial instability and EDS...I was told I had raynauds but when I was dx with EDS the dr said it was most likely the EDS causing the raynauds like symptoms.

May I ask r the drs that treat this rheumatoid drs??

Thanks
"selma"