A Better Understanding of Pain Isn't Making Talking About it Better
I can’t remember a time when the word, “Pain” was more loaded, and I’ve been paying attention for a while. Decades in fact, not because I wanted to, but because the pain has been coming with me wherever I go since I was two years old. At 50, I’m pretty tired, to say the least. But not too tired to spend every day helping my body to be as pain-free as possible through daily exercise, physical therapy, use of splints, heat/cold, rest, meditation, and every so often, when the pain keeps my body buzzing all night long, an opioid. My life consists of a continuous dance of managing pain levels so that I can actually have a life worth living.
A new RA issue?
A few months ago, I was at my physical therapy appointment, exercising on the arm bike, and checking in on my pain to make sure I wasn’t overdoing it. Last year I had major surgery after my neck became unstable so I am needing to strengthen my neck muscles a lot. I was about five minutes in, congratulating myself on how well my neck was doing when I noticed something- My right shoulder was killing me.
When my physical therapist began working on me, I told him what happened and said, “Funny how I can have pain I’m not aware of, and it is still wearing my body down, tiring me out.” In my mind, it was a casual remark, an observation more than anything. But instead of responding with a, “Yes, that is funny,” the way I expected, he looked at me and replied, “Does it though?” I wasn’t expecting that answer. While I’ve been having surgery and getting through my day, pain researchers have been talking about a few things that have me scratching my head. According to some, pain isn’t pain until your brain says it is. Until pain becomes conscious, it doesn’t exist.
Pain doesn't become exist till it becomes conscious
This conclusion came through improvements in brain imaging and mapping which has greatly improved our understanding of the pain experience. The old way of understanding pain was that pain fibers, called nociceptors, transmitted information about damage to tissues in the body, up the spinal cord to the brain, and then the brain gave orders on what to do about it, i.e. get your hand out of the fire. It involved a stimulus, (heat to the hand) and response, (moving your hand away from the fire.) We knew that pain perception can be different from actual tissue damage and that emotional state and context can greatly influence the person’s perception of how much pain they were in. We knew that chronic pain altered the nervous system so that pain fibers could become “trigger happy,” encouraging the pain response long after tissue damage happened. This is still technically true, but with one new finding- there are no actual “pain fibers.” Instead, the nociceptive fibers are strictly danger signals. Here is a quote from the article, Nociception and Pain: What is the difference and Why does it Matter?
Some nerve fibers respond to potential threat. Called nociceptors, (“noci” = noxious; “ceptor” = receptor), these nerve fibers respond to potentially damaging levels of heat, cold, pressure, or chemicals. When this high-threshold (i.e. they will not respond to lower, non-threatening levels of stimulation) nociceptors are activated, they send impulses to the brain. This process is called nociception. Nociception is NOT a “pain signal” nor is it in and of itself pain. It could more rightly be called a “danger signal.” It alerts the brain that something potentially threatening has just occurred.1
Pain is a complex experience
Pain is a complex experience, one that is integrated into many body systems and is designed to keep us alive by keeping us away from damage to the body. With the new understanding that there are no actual “pain fibers,” and instead these fibers are actually warning signals, it helps us all to work with the experience of pain differently, especially chronic pain. Pain may begin with a “danger signal,” but the experience of pain is created in the brain. This means that when you suffer from chronic pain, managing feelings of anxiety, or calming the mind through meditation can help your pain levels. You control the pain indirectly by controlling the environment of the pain processing center (your brain). When a danger signal hits a brain on high alert from anxiety, the pain response will be greater than if it reaches a brain that is calm from deep breathing.
This is all good news for people like me who rarely have a moment without pain because now I have another way to affect it in a positive way. It also confirms what I already know, and provides validation to more holistic ways of approaching pain which hopefully will someday percolate into mainstream medicine. But it also creates responses like the one I had from my PT. When you live with a complex chronic illness like rheumatoid arthritis it’s inevitable that people will want to simplify your experience and/or frame it around their own. Not only are we having to defend our right to take opioids, we now have to defend the fact that even though pain actually is, “all in our head,” that doesn’t mean we can think our way out of it. Especially with a disease like RA, a disease that creates actual real time tissue damage, and needs those danger signals to help guide treatment.
I’ve been thinking a lot about that day since it happened, and wondering what my best response could have been. That day, I was speechless, because to me, his response was so out of left field, and unexpected. Until we find a good way to alter the nervous system’s response to chronic tissue damage, some pain will always be a part of my life because my danger signals will keep picking up the fact that my body has been damaged. It’s quite obvious to me, and many people like me, that pain IS present whether you are conscious of it or not, which is the whole reason that distraction is a good technique for helping to decrease pain, and why I often wake up exhausted after sleeping all night with a painful body.
The bottom line is that our understanding of pain, like rheumatoid arthritis, will continue to be evolving for awhile, and that means that we all may occasionally have to field questions like the one my PT posed. The truth is probably much less simple than any of us think, and won’t be tied up neatly into a bow and packaged, as much as all of us want that. The pain experience, just like the human experience, is a rich and complicated one. And as much misinformation and simplification that’s out there, I’m glad we are talking about it.
For more reading on the pain experience:
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?