Depending on the pain scale you reference, level 10 pain is defined as either “the worst pain you’ve ever felt” or “the worst pain you can imagine.” I think the latter definition is the more valid of the two. After all, if the only pain someone has ever experienced is from a paper cut, then that’s the worst pain they’ve ever felt.
When you hang out on message boards for nurses, people with spinal cord problems, and people with degenerative conditions, you hear a lot of people talking about being in pain, and there’s more than a few who report 10/10 pain all of the time. I’m not one of them, and probably won’t ever be. No matter how severe my current pain gets, no matter how disabling and detrimental it is to my mental, emotional, and physical well-being, it’s not even close to the worst pain I’ve ever felt.
My level ten pain benchmark was set in 1978, when I was 15 years old.
That was the year I had a second surgery to try to remove a malignant tumor in my cervical spinal cord and brain stem. Because the cancer was totally intertwined with the cord, the surgeons had to cut out large tracts of the spinal cord along with the tumor.
After the operation, the damage to and swelling of the remaining cord caused central pain and severe allodynia in my upper left (breast, shoulder, arm, and hand) and lower right (butt cheek, leg, foot and right side of the pubic area) quadrants. Those areas felt as though they were simultaneously burning and freezing, and my skin was so hypersensitive that the slightest touch was torture. A puff of air across my leg felt like I was being flayed open. A tear that rolled off my cheek and landed on my shoulder hurt as bad as if a butcher knife was being plunged into my body. Laying on the bed and being covered by a sheet was gut wrenching, all consuming, unable to think, unable to do anything but sob and scream out loud agony. The massive doses of morphine they injected into me every three hours did little to ease the pain -- all it did was sedate me enough to keep me from losing my mind and begging to die.
Fortunately, the as the swelling in the cord went down, so did the hypersensitivity. I was able to cope with wearing clothes by the time I was released from the hospital several weeks later, and over the course of the next year the burning/freezing pain diminished (although in my left shoulder it was replaced by a host of other forms of neuropathic pain). My right leg no longer has central pain, but it is hyperalgesic. When I experience noxious stimuli in that leg, the pain is far more intense and lasts much longer than other places in my body.
But nothing I’ve experienced since then -- nothing -- has come close to the pain I felt back then. The only time I’ve felt anything close is when I broke my hypersensitive right leg in 2008. Even though the pain of that break left me screaming each time my ankle was moved, I could only rank that pain as 9/10.
I try not to judge people who say they are in 10/10 pain all of the time. They’re clearly experiencing severe pain, and I know how hurting so bad all of the time wears on you. It robs you of your life and it destroys your soul. But my personal belief is that if the pain you’re having doesn’t totally incapacitate you -- if you’re coherent enough to form complete thoughts, if you’re able to communicate with others using actual sentences, if you’re able to sleep each night and get up and go through the motions of life each day -- you can not honestly say, “My pain is a ten.”