Hi. I was dx with sle 22 yrs ago. I had 4 children.premature..with lots of issues.36blood transfusions, 9 piccs,numerous central lines and nutrition tubing. I was 100 lbs and dying. They kept screwing around with treatments which were not needed.i was septic twice a.d now have seizures from a pain patch that also nearly killed me.
I have gained to 212 lbs now. Lots of junk steroids. And not one doc ever listened to me. The nodules hurt, burn, are so extreme after ten yrs of this no one has ever helped. A surgeon even got mad duri.g a consult.
Here I lay with mybrewsts hurtinv, stomach, even u.der my arms and legs have these nodules. I roll the around anx end up bruised. Will this last forever? I lie awake thinking about cutting them out. Not that I would but christ I cant take it anymore!!!!