@Joy - I have a couple different types of pain. When I was first put on the steroid in July, the pain I had in my shoulders went down, but the hips increased. Now they are all hurting. It seems that the shoulder pain is like a dull ache and the pain in my hips is more sharp and hurts more with different movements than the shoulder does. I also noticed that the pain in both increases as the day goes on. By this time at night, I am hurting pretty badly. I am trying to see if I can go without the Vicodin tonight, but I don't think I am going to hold out. I will say that I am figuring out that the sun does affect me. I don't rash (I don't think), but I become sick, nauseous and head-achey. I was outside talking to someone and realized that I really was not well. I went home and after a short errand, I had to go to bed. I have been really off since then. Until I had my first rhuemy appointment at this practice, I just thought that it is how people get in the sun.
@Robin - I am taking the steroid taper (Methloprednisolone?). about the pain, honestly, I am no sure to think about what is what. It seems that as one pain is getting better, another one is getting worse. I told the doctor today that I was so afraid of someone telling me that I didn't know what I was *really* feeling, or that I was faking it. She empathized. One thing she told me about fibro is that most (some?) people with it are hypersensitive to pain. It makes so much sense to me! I have always complained about pain that most others sluff off as nothing. I also seem to have pains that send me to the ER that make the docs wonder about me.
about the eyes, I actually had to get an okay from my Ophthalmologist before they would start me on this. I have weak spots in my retina, and recently had surgery to remove a large amount of floaters caused by a hole in my retina. They tacked it down with a laser as well because they could see the start of detachment. This is an actual retina ophthalmologist that I see, so I think I trust his word. :) I do worry about it though.
@Karen - Thanks! I do not like steroids. They make me feel not well in a different way than the pain. At this point though, I am willing to do whatever it takes to make the pain go away. I hate it. RE: Lupus, I will tell you what I told my mom when she told me "You do not want to have Lupus" as if me wanting it would change what it is or is not. I look at it this way. I have *something* going on. I just want to know what it is. I have been in oblivion for far too long, and this, whatever it is, is going to be around - name or not. I do appreciate the well wished though :)
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that.
Frequent lurker... Part time poster.