My Pain Spectrum

After a rough day, I created this description of my pain spectrum. I shared it with my supervisor, who said that she appreciated knowing what I was going through. Sharing it here helps me feel less isolated. Thanks, Andy

Pain Free - Life is great. It’s wonderful being a 58 year old man living the dream.

Reminder - Dragon love taps. Small trigger/response combos; localized and of virtually no duration.

Alert - Stop doing that. Abrupt, sharp pain caused by specific activity of muscles served by the TGN (e.g., touching my cheek). Short duration, immediate involuntary response noticeable by other people.

Short Interrupt - Full stop. Pain duration increased to a point where I must stop doing what I was doing and wait for it to subside. Multiple activities at once exacerbate the problem (e.g., talking and eating). I can partake in activities, though stilted at times. When the pain triggers are around the mouth, this pain level makes it difficult to continue work and partake in social activities (e.g., writing, sharing a meal, conducting a conference call, finishing a spoken sentence).

Long Interrupt - These are the periods of time when I am deciding whether or not I need to leave to find a better environment for coping with this lengthy painful intrusion. My full attention is aimed at attenuating the pain.

Purgatory - Sudden onset of full pain response to TGN activity or environmental conditions. May last from 5 to 30 seconds, sometimes more. This is the pain that causes me to reel away from my left side, sometimes spinning around in a circle. I find it humorous, yet extremely painful. I can anticipate the ending of the pain which makes this level endurable.

Hell - My eyes start to water and I might even let out a yelp at the onset. It is unclear for how long each episode will last and how long the respite between episodes will be. It is an demanding intellectual exercise to convince myself that this is not my full life. At this stage, I begin to understand why this thing used to have different name.

Very interesting, Duckpuddle, thanks for sharing that. My pain is of the constant, low grade type, so I can’t relate to the sharp pains, but I understand the quality/functionality of life issues. Do you do any journaling of your pain experience and levels? I do some (good day, bad day), but I need to get a bit more detailed, I think.

I do write my experiences, like the list above. Believe it or not, my journaling problem is that I have journals all over the place! I make notations wherever it is convienent. I figure sorting that out is either a retirement project, or someone else can use it for original research…or something like that.

More seriously, logging the pain events, medical visits, changes in meds, etc. is an important thing to do. I’m getting better at it because it gives me a vent at the time to express --to my self-- what and when I am being beaten up by, or fighting back against, this dragon inside of me. I do jot down the important moments.

My ride is very cyclical. For example, I can sense my self rising up my pain spectrum. But there are larger cycles as well. These can run in terms of weeks and months for me, though my neuro is thinking in terms of months and years (but he is always trying to get to the specific dates of specific events --hint: journal).

Overall, I’m in a good place. I’m moving from Boston to Maine, partly because of my facial pain. A more relaxed schedule and overall environment will help me cope better and will let me get a dog.:dog2:

Best, Andy

1 Like