Well, it started for my when I was 14. It feels like someone is pressing my spine together like an accordion and ripping the skin apart with a chain saw. My leg will get weak, I lose fine motor skills... I also get random pains around my body once In a while, or tingling, sometimes itchiness.

How about you? What's it feel like for you?

The reason I joined this app was because many doctors in my area are very dismissive and dont educate. I feel constant pain. My joints, my bones. I always describe it as feeling like severe growing pains that just never stop. Fatigue. Lots of digestive issues. I also tested positive for antibodies countless times over the years. Not sure what that means though.

This sounds like the same issue my mom has. She said it feels like growing pains but she's 38 now and obviously isn't growing anymore. I have hypermobile Ehlers Danlos Syndrome, as well as Fibromyalgia and POTS (Postural Orthostatic Tachycardia Syndrome). I was talking with her and we were saying it's likely that she has EDS as well and gave it to me.

Mine feels like swelling in all my joints. Sometimes the inflammation is palpable. Sometimes it’s too small to feel from the outside. It’s an escalation, like an uncomfortable slide that keeps going long after I would have gotten off. it’s alarm bells for a fire that’s been burning for years. It’s having all different parts of the body complaining all at the same time and nothing quite makes it stop. It feels like pushing a boulder on a hill. Only taking breaks makes it any easier. It’s like working out at the gym while you have a cold and a broken leg. It’s physical and neurological overload. It’s dysfunction at the cellular level.