My JHS story so far

I remember being in pain since I began walking to school at age 6, but my mother says it was well before that. Like most of us with JHS, my pain was belittled as exaggeration, so I grew up believing everyone hurt this much and learned to hide my pain well. I have no official diagnosis of hypermobility or any underlying syndrome (except a fibro diagnosis from a hack). My joints have gotten worse over time, not better, and I have reached a point where I can no longer work. Pharmaceuticals and anesthetics have little/no/negative effect on me, but natural remedies sometimes work wonders. I never dislocate, and don't get sprains often, because I don't do things often, since standing, sitting, and laying down hurt enough on their own. I have had to teach myself to say "ow" whenever I feel anything bump me because I used to not say anything, and everyone would get concerned that I didn't feel what is to me, not even pain.

My doctor has been the same to me as to everyone with JHS. Brushing off symptoms as hyperbole and running blood tests just so they can say "See? It says you're fine". Only recently did she realize something might actually be wrong, with the same complaints many times over many years. Although turning my thumbs backwards might have helped that realization. Fist bump for grossing out a doctor anyone?

I am currently awaiting a call from an internist, and am on a waiting list for a 2nd rheumatologist (as none are accepting referrals).

I feel like this is a perfect spot for some of my "one time" statements.

One time when I was younger, it was so common for me to twist my ankle that when it happened, it didn't even affect my stride.

One time I twisted my ankle so far my heel touched my leg, and my foot filled with blood, but I could still walk and nothing broke.

One time I touched the floor with my palms in 6in platform boots.

One time I fractured my tailbone and never bothered to see a doctor or take medication, because this wasn't any more painful than what I am used to.

One time I terrified a physiotherapist who thought I was in extreme pain from spasms, but I had no idea why she was yelling.

One time I got an ear piercing and didn't know it happened.

One time my wrists hurt so badly I had to wear splints 24/7, and almost hit the floor because I collapsed at the pain from washing my hands.