Adult Onset Still's Disease Support Group

Hi Everyone,

My name is Emily and I've had AOSD for about 10 years now. It has totally taken over my life...I try to stay positive but at times it is very hard. I have chronic pleurisy and joint pain. It all started when I was 23 years old. I thought I had the flu, but I just kept getting worse and worse. My doctor admitted me into the hospital and within 48 hours my heart started failing. Every muscle and joint in my body was screaming and I didn't even know if I was going to live or die. I was in the intensive cardiac unit for about 2 weeks and then once they got my heart under control they moved me to the regular part of the hospital where I stayed for about a week and then went home. I live on pain medication just to get up and around and struggle with extreme fatigue. At times I feel so alone that I finally thought I needed to find some others out there who understand this struggle...I'm 33 years old and most days I feel 80!

Hi Emily!

I know how you feel. I have been diagnosed less than a year, but have been sick about 5ish years. The joint pain is the worst for me. I also have pleurisy, and have now had pneumonia 4 times since last August (2009). Most days I feel like death, or wish for it. My disease is not yet under control.

BIG WARM WELCOME AND HUGS!

Angela

Mine isn't under control either so I feel ya. I just want a normal life! I wish they would do some more research on this disease...It is so rare they don't even know how to treat it. I remember about 3 years ago I went to emergency because I couldn't breathe my lungs were so inflammed and when I told them what I had they didn't even know what I was talking about! They actually had to look it up on the internet to see how to treat me. It was incredible!!!

I hope you get some relief soon I know how days can seem like years when you are so miserable..