My Journey with Ehlers-Danlos Syndrome

"On the girl's brown legs there were many small white scars. I was thinking, do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."

- Little Bee by Chris Cleave

Thursday, March 31, 2011

EDS and Physical Therapy

One of the hardest things with EDS and it's effects on my body is physical therapy. Even since before I started having surgery after surgery my body would compensate for the lack of stability in my joints. Because of that, a big part of rehab for me is re-learning how to use my body. For example, when I'm doing an exercise that is supposed to work my glutes (this is a big issue for me) I rarely feel a traditional exercise in the muscle group that is supposed to be working, I'll feel it almost everywhere else, my calves, my back and especially my foot if it's a weight bearing exercise. Physical therapy for me, takes a lot of creativity and a lot of extra thought on just how to isolate my muscle groups that need strengthened and how to work them until fatigue. Most importantly, how to do that without making another part of my body suffer, like my back which often holds back which exercises I can do because of the stress I put on my back to compensate for everything else.

Yesterday my physical therapist told me he was writing a report on the top 10 most challenging disorders to work with in physical therapy. Because of me and lovely EDS, he added Ehlers-Danlos Syndrome to that list.

Today I have multiple appointments. I'm going to my PA to have my incision checked, then off to physical therapy again. Then I'm going to my compounding pharmacist to figure out some abnormal levels I have from when I got a ton of blood work done before my December hip surgery.


  1. PT huh. Best wishes. Keep going. I'm hopeful it will work out. Take care.

    Love, Gary and Barb

  2. I totally understand! I am the same way! Good luck and I hope the proper muscle groups start firing in the right order.