I have a connective tissue disease called Ehlers-Danlos, and the frequent dislocations and subluxations (partial dislocations) associated with faulty connective tissue have been a part of my life since I can remember. However, the pain associated with my disease has increased since puberty. By the time I reached junior high school, I stopped exercising or doing any strenuous activity, including running track, which was a sport I had natural talent for. As an adult, my weight increased because of inactivity, and my pain increased as well. Because of this feedback mechanism, the more pain I had, the less active I became, and the more weight I gained and muscle I lost.
By the time I married in 2009, I was wearing knee braces every day, 12 hours a day, and I was using a handicap parking permit because walking to my car was painful at the end of the day. I was having the baseline chronic pain, but also would have days where I would be in so much pain I would have to use pain medications, elevate my knees for hours, and ice them. Even then, it was only a partial fix. Doctors would tell me I needed to strengthen the muscles that held my joints in place since the connective tissue couldn’t, but when I would get referred to PTs, they treated my joints as if I had a knee injury, and ignored my dislocations. I would wind up not getting better and often times getting worse because they were unable and/or unwilling to think out of the box.