Like most other spinal cord injury patients, I suffer from chronic and constant neuropathic pain or nerve pain. For me it's normally a band of pain around my chest at the injury level and it feels like a bad sunburn, or a tight straight jacket with the inside consisting of steel wool or coarse velcro against my skin. It's not the sort of pain that comes with a sudden acute injury, and doctors simply don't seem to know what to do about it. The medical advice is that you just have to 'learn to live with it',
I usually explain it as if the upper part of my body, the unparalyzed part, is sitting in a tin can with sharp edges all around the top. And when I move, my body rubs against those sharp edges. Over the past ten days the pain seems to have become steadily worse (at least until Sunday), and I've been pushed into doing more active pain management.
There's a conundrum here, because I don't like to simply take more drugs, so I tend to feel I should just 'grin and bear it' a lot of the time. But if you continue doing that I get to the point where I'm really not functioning very well, if at all. I just sit and gaze out the window, and miss writing blog posts and other constructive things I could be doing. At that point I think I need to do something! And the medical advice is to take whatever you need to control your pain before you get to that point.
I do several things to try and control the pain. I take a drug, Gabapentin, which should reduce it, but I'm not sure that it's actually working. After a bad day Saturday and several days before, I went back to taking some cbd/thc tincture, which does seem to have helped in the past. The disadvantage is that when I've used this regularly in the past I've felt a little dopey during the day. I'm dopey enough without adding to it! I've also added simple tylenol a couple of times a day.
One thing that really helps in the evening is a bean bag heating pad, which Mrs. F.G. warms up in the microwave for me. Using it for an hour of more after I'm put to bed really helps, and I fall asleep easily, thank goodness!
But a big part of my pain management that you might not think of, is keeping my brain occupied. As long as I'm consciously thinking of something else, or reading, I forget the pain. I seem able to just ignore it. As well as having a book on the go, I'm constantly using my cellphone to read the news or play sudoku. Sometimes, even though I'm glued to my cell phone too much, I think it's actually my best pain medication.
I learned yesterday (even though I've been asking for months), that there is a pain management nurse available nearby. I've requested an appointment, and hope to get more advice about what I can do soon. In the meantime, I'll continue actively doing what I can, but if I miss posting you'll know why.