A friend of mine remarked that in the pain scale she learned in her medical training, my level four was her level ten. On her scale, level ten was calibrated as kidney/gall stones, toothache, childbirth, and the like. That made sense to me as once my liver actually starts moving out the lumps of old bile that have been accumulating the sensation is a bit of a relief. That relief is multifaceted, I think. There is a quite literal relief of backed up pressure finally letting down, there is a bit of an endorphin spike, and there is the conceptual relief of knowing the sludge is moving in the right direction, ie out of my body, and through the proper channels. So gall stone pain is the lesser of two evils for me.
Her statement also got me thinking about my father who was diagnosed with rheumatoid arthritis at 19 and survived a terminal thyroid cancer at 30. When he was in his mid fifties the cancer spread to the pleura that covered his lungs and was steadily seeping fluid into his chest. Shortly before he died, the doctors at the VA hospital in Tucson did an exploratory surgery where they split his rib cage open with what amounted to poultry shears so they could take a look around inside, and then stapled him back together. I was by his bed when one of the doctors stopped in to ask him what his pain levels were. His answer was that the pain was a two on a scale of one to ten. He then saw the look on the doctor’s face and I have remembered his answer ever since. Because what he then said was that the pain from the cancer and the surgery were as nothing to the pain of the rheumatoid arthritis.
Recently, I have had the latest of a number of bone chips working its way down from the center of my head along the lower branch of the trigeminal nerve. I can track the pain and inflammation as it moves, and my body has decided these chips have to squeeze through the nerve passageway in my jawbone before they can come to the surface through the gum on the outside of my lower molars. It is toothache level pain. I would describe it as an irritating, distracting, and shooting pain. It is a clear level four for me. However, even though the nerve has been repeatedly traumatized , it is not a debilitating pain. My level five is the full body debilitating pain, and the difference has to be the physiological change in the way the brain/body processes intense pain over extended periods of time.
Until the medical profession acknowledges that physiological change,, they don’t have a conceptual framework to study the problem. As long as they are not studying it, there will not be effective medical protocols to treat people with chronic pain. And communication between doctors and patients will continue to be an exercise in frustration because the same words mean such different things to the two parties. So, for everyone out there dealing with chronic pain and autoimmune diseases, there is a reference point. My father’s two was the doctor’s eight. Perhaps that can be a starting point for genuine communication.