I'm pretty new here, and have spent most of my time trying to play catch up - so please pardon if this has been discussed to death.
My daughter was diagnosed with undifferentiated juvenile arthritis (with the rheumy saying most likely AS) about two years ago. We tried the recommended treatments for the first 9 months, which seemed to just worsen her situation. So we've gone the alternative route for pain control. But here's what I wonder sometimes: what is the typical daily pain level for someone with AS?
She always has the back pain, either in her si or thoracic region, at a daily level of about 4-5.
Since the introduction of a low starch diet, most of her migratory joint pain elsewhere has gone away...no more daily report of "it's in my right ankle. It's in my left hip. My hands hurt today. My knees are killing me."
She used to have really bad days, which I would consider a flare, where her pain level went as high as 7-9. Again, pre-low starch.
But I've seen others refer to their pain level getting better as the day goes on, as far as stiffness goes. Since she doesn't seem to experience that, I wonder how many of you would report an improvement over the course of the day?
Also, how does your daily pain level compare to while you're in a flare?
It's just one of those things they don't seem to tell you in all the reading materials, because obviously it's different for each person.
