Originally Posted by madisongrrl

There are probably several reasons why I could be doing a little better now than how I was at the beginning. I've been at this for 1.5 years so I could be getting more used to living in this abnormal state of pain. I'm on more medication now than when I was when it started. (I use a medication app for my iphone to remind me to take all my doses of meds.) Another important factor is I understand what is wrong with me now, which helped reduce some of my emotional stress. I'm a science person and work in a science setting, so I feel like I have a good understanding of the nuts-n-bolts of this disease. This helps me understand what to expect and what the things that I should try to do in attempt to find an underlying cause.

Here is the thing, some days I feel like I can get through the day...other days I tell myself that I need to break down and get a pain doctor. I went through several weeks of feeling awful. The burning on the back of my scalp was getting unmanageable. The pain all over my body was keeping me up half of most nights. Then, I took last week off of work and slept 8 hours each night. This week I'm feeling better, I'm more under control. I'm less stressed. I hurt less. The intensity of this thing can bounce around. It's way too early to know at this point if I'm getting better or worse. I'll probably need another few years or so to determine that.