I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.
Not at all like the years before when I flared, the doctors had no clue what to do with me. As my labs, back then climbed and my ferritin level reached 14,000. Right now we caught it 3000. All echo and heart monitoring is normal. Thank goodness.
Read more ED with a diagnosis this time gets the ball rolling
I know that stress is a huge component to Stills flares. The rash has come on slowly over the last 10 days, but I justified it as hives or emotions from having these broken bones for 6 months. I didn’t take the rash seriously until 2 days ago when I lost all appetite and got…
It’s been a journey I never want to take again. It’s been absolutely horrible this ordeal. In August I slipped on our flooded tile floor when I came down stairs. The floor had flooded with an inch of water everywhere. When my foot slipped on the water I hydroplaned across the floor. My left leg…
Could so many days of pain that does not subside bring on Still flare? I know it can, but I don’t want to even allow the thoughts to take hold in the universe. My poor leg. Our 1st floor of our house flooded and I came down the stairs and hydroplaned across the white tile…
Read more Caution. Extreme fatigue, high and constant pain can bring on a flare
I have been feeling very tired lately. Is it due to the weather change? Diet change, stress? Who knows. I had my labs done and everything seems fine. But as always, if I over do my activity or if the weather changes and I exert myself harder than usual, my fatigue is so tremendous that…
Read more Sleeping 14 to 16 hours makes it hard to have a life
Something has been changing. I wake up during the night with pain in my right hip, right knee and sometimes left wrist. When I get out of bed in the morning I have such intense pain in my knee, I can barely get down the stairs. I cry. I have so much to do and…
For the past 2 nights, around 6:45pm I begin to feel very lethargic. It’s not the typical, “Gee, what a long day its been, Im tired!”. It’s more like, as the minutes go by, at 7pm my throat feels like Ive been shouting all day, my body feels so exhausted and my eyes can no…
Ive had a good amount of energy for quite a while now, a few years. But for a few days I have felt cold and tired. I push to keep myself doing what I usually do, workout at the gym, visit my horse at the barn, clean the bird fountain, errands, dinner with friends. Today…
Ive been working hard around the house, the usual tasks that need to be done around here. My days seem to start off with energy to spare and then the following day I push the boundaries of my endurance. I keep up a non-stop pace again and again and again, until I can’t realily decipher…
Adult Onset Stills Disease 