I was not diagnosed until I was 39, right before my Chiari surgery. In my adolescent years, doctors always said I had “growing pains”. In my 20’s, doctors said I was just “extremely flexible”. In my 30’s, the pain started throughout my body.
I had my first official dislocation of my right thumb at 35. From that point on, my thumb would easily sublux, frequently, and would always hurt. Right before my 40th birthday, I went to NY and had my first consultation with a Chiari specialist. Right after my 40th birthday was Chiari decompression surgery.
At the age of 42, my next surgery was carpal tunnel release on my left wrist. I am now 50 and have been suffering with chronic pain since I was a kid. I was also diagnosed with periodontal EDS which makes sense now. There are many missing teeth, periodontal disease, and teeth that just break away. Another discovery is that my spine is crooked which causes a lot of back pain.
The random bruising all over my body at any given time makes me look like I am in some sort of an abusive situation. I’m usually either using a cane, walker, or wheelchair. Also in my collection are splints, a tens unit, compressions, and many medications prescribed by my specialists.
EDS has robbed me of so much, especially having a good quality of life. I’m stuck in a body that no one should ever have to live with. It’s a love/hate relationship at this point, and any good days I count as a blessing.
