Hey Rach,

In my experience, there just doesn't seem to be a strong correlation between the oxygen sats and the level of crudiness I'm feeling. For instance, last week I was going into the low 90's and upper '80's a lot. I looked horrific with the right side of my face falling down and I was definitely noticeably out of breath even just sitting and talking. But, I was able to go over to my friend's house a couple of time just to hang out and talk. The last couple of days I've been feeling awful - curl up into a ball on my bed and feel like dying awful. My eye still droops, I feel like I'm really having to suck in to breathe, but now I also have this shaky feeling inside and my arms are shaking with weakness and my fingers are numbish and slow to move. But guess what? My oxygen sats and even my heart rate look better. I don't know why! The oxysat is still falling but not nearly as much. Are other breathing muscles taking over? Has the disease moved to other areas? I just don't know.

I don't have oxygen but I find that if I'm feeling awful that going on the CPAP works, regardless of what the oxysats say. And no!!!! You're not crazy, it's not all in your imagination. But ya, I totally understand how you feel. It actually makes me feel better to see the oxygen sats go down because I feel like I have some validation that I'm not crazy. This disease is both devastating and sometimes completely random and, at least in my case, that can make me feel crazy. Because it's so hard to predict. I figure I have about 75 symptoms. Like an eskimo with snow I have probably 30 different fatigues that all feel different. I finally figured out my disease is like a kaleidoscope. It"s made up of the same elements but from day to day or even hour to hour it's going to look completely different. THAT made me feel crazy because for a long time I was describing the disease differently at one point in time from, say, the year before. After 8 years I'm finally seeing the big picture and able (kinda) to predict what's going to happen.

Anyway, my point is TRUST YOURSELF. If you're feeling better, you're feeling better. If it's psychological, the effect will go away soon and then you'll know. Otherwise, it's great that you've found something that helps.

Ally