Thank you for your kind comments. As for CBT tools, I think the most powerful thing I learned was the impact of attention and stress upon the pain signals in the brain. If I give fearful, catastrophic, or even just undue attention to my pain (mental, emotional, or physical) the brain interprets that the pain signal is important and turns the volume up on the pain (or thought, etc.). On the flip side, when I am able to normalize my pain ("Oh, I recognize this sensation. My nervous system must have gotten knocked into high alert. I can handle this.") my brain interprets that the pain must not be as important and turns the volume down. There is a balance between catastrophizing and avoidance/denial. Often that looks like a cocktail of acceptance and normalizing. I come from a go-getter family where the expectation is that you always go above and beyond. Finding balance without feeling lazy is one of my larger growth edges.

My neurologist is part of the CHI network. It is part of the larger network that was hacked a couple of weeks ago. I am so glad I made it a point to print out my "important" test results and doctor notes! I just love Dr. Danielsen. She is thorough, letting me know what she needs to rule out without making a big deal of it. She is the first one who mentioned CNS involvement. I had a full workup at Mayo with a neurologist and he missed it. Maybe because everyone was so focused on my being a type 2 diabetic. (They were all expecting peripheral neuropathy.) Maybe it was because my symptoms had not progressed enough for him to make the connection. He found both small and large fiber neuropathy. (Yes, they did 2 punch biopsies. Both were positive.) He also found the MGUS and got me into hematology.

Moving forward, Dr. D. increased my Baclofen to 5mg 3x/day. It has helped with some things, which is good. She may or may not bump it up again before I see her in November. She wanted to send me to a spinal guy to look at my neck (and recheck my lower back) but, with the computers down, I am not sure how that will work. She did a short EEG that came out normal (but left me with a migraine!) but wants to do a three day EEG. She wants to rule out epileptic activity, as I am super sensitive to all types of smoke and often smell some form of it when no one else does. It lasts for hours, sometimes off and on for days.

Lots of moving pieces. I think we have come to an agreement that my CNS is overactive. The fact that the Baclofen has helped supports that. I also have some things going on in my back and, potentially, some CRPS in my left foot/ankle. It has been a long journey!