Updated: Oct 24, 2021
Post #3 in the series "Reprocessing Chronic Pain"
I'm almost afraid I could "jinx" it, but I am seeing real progress. For a week now I've had only mild discomfort in my back (between 0 and 2 on a pain scale of 1-10). Before this it would regularly go up to 5-7. And I have been able to do things that used to it exacerbate it, like sitting, driving, and shopping, without an increase in pain. Finally, I can notice it coming on, and use my mind to stop it from increasing. This is kind of amazing to me. There's no way I would have believed this without feeling it in my own body.
And then there's my right thumb. A few years ago it started to hurt when I moved it or used it. You have no idea how much you depend on your thumb until you try to stop using it (it's also quite evident if you live with dog, and contemplate all the things they cannot do for lack of thumbs). A hand therapist said it was arthritis and probably triggered by typing on my phone. The pain definitely increased when I used my phone, so that made sense. On and off I've worn a thumb brace. I've tried to get used to dictating to Siri rather than typing on my phone. I noticed that I had less grip strength in my right hand and began to use my other hand to open jars or work a can opener. I believed it was permanent and it would continue to degenerate. I am 56 after all. Then, yesterday I was typing on my phone and it occurred to me that there was no pain in my thumb. In fact, I had begun to forget about it. I'm wiggling and pressing with it right now trying to detect any sensation in it. There's none.
In my back - which has been in pain for decades longer - it's gonna be more of a process. I've begun to notice the first signs of pain as they appear - a sensation I'm calling "pre-pain." Before this work, I would have felt those sensations, identified them as pain, concluded that "I am in pain." I'd have felt apprehensive, irritated, frustrated, and discouraged. "Today is going to be a bad day," I'd think. I might have stopped what I was doing to take care of myself and calm the pain. That often brought on feelings of sadness, loss, or even shame ("Ugh," I'd think to myself, "I hate that I have to lie down in the middle of the day when all I want to do is finish this task. I'll never be a productive person.") Or I might have pushed through it to accomplish or finish something. That would always makes the pain stronger and harder to deal with afterward. I'd be down for several hours. Either way, pain would "set in" and take hold of me. And my mind would be dominated by negative thoughts and feelings.
Now I can feel the "pre-pain" and pause to identify it without reactivity. What does it actually feel like? It doesn't really hurt. It might tingle, itch, pinch, or feel warm or tight. But if I look closely, I see that it is NOT pain. Then I can use two of the most powerful strategies of PRT: sending myself messages of safety and somatic tracking. I remind myself that I'm not in danger and the pain doesn't mean anything. I focus on the sensations with detached curiosity rather than fear. I consciously relax my breath and body. Then I go on with what I am doing. The sensations remain in the "pre-pain" zone, even if I am sitting at my desk writing or in a Zoom meeting. Since graduate school 32 years ago, sitting - especially sitting to read, write, or use a computer - has been my biggest pain trigger. Right now, as I type, I can feel sensations in my lower back but I'm not interpreting them as pain. I am not anticipating that they will grow or stop me from finishing this post. And they are remaining stable, not growing stronger. My mood is optimistic, hopeful, and, to be honest, a bit incredulous.
I know this is only one step on a long path - and that the path won't be linear. But it's so encouraging. I feel like I have some control over my body instead of it controlling me. Here's what I've been doing since the beginning of October that seem to be contributing to the improvement.
The essential starting point involves a paradigm shift -- from believing that pain is a sign of danger and/or damage to the understanding that pain comes from the brain habitually over-reacting to stimuli from the body. The pain we feel is not actually generated by a body part. The body part - in this case my back - contains sensory neurons called nociceptors. They detect dangerous or potentially dangerous stimuli and send signals to the brain. The brain then assesses the situation to determine the degree of danger. To make its determination, the brain draws from memory, emotion, and physical states like muscle tension or inflammation (as many as 44 different brain regions are involved in pain perception).* Then the brain sends out a pain signal. The intensity of that signal reflects how much threat the brain detects. If pain has been chronic, the brain is hypervigilant for messages from that part of the body. It is primed to react with a strong warning signal out of habit, memory, and all the associated negative thoughts and feelings. Moreover, if there is already a sense of threat in the brain - due to past trauma or present circumstances - the pain signal will be that much stronger.
To retrain my brain not to overreact in this way, I had to accept and really internalize the fact that there is nothing actually damaged in my body and that my body is not in danger. This is tricky. You'll notice I didn't say "there's nothing wrong with me." Some experts use that phrase, but it didn't feel true to me. There is something wrong. I hurt. There are some physiological issues in my the tissues of my body - scar tissue from multiple surgeries, trigger points, muscle spasms, arthritis.
But, I now believe that those don't inevitably produce the volume of pain I have experienced for the past 32 years. My brain is amplifying pain signals based on its past learning and conditioning, my default mental and emotional state, and my reaction (cognitive and emotional) to felt sensations.
This part of the process is called "making the case." I had to "prove" to myself that the pain was in fact "neuroplastic" ("neuro," meaning generated by the brain, and "plastic" referring to changes in neural pathways) as opposed to structural (meaning triggered by injury or damage to the body). It's kind of like crafting a legal case for a jury. What evidence do I have that points toward neuroplastic rather than structural pain?
First, I learned that research clearly shows that other people with physical findings like mine (scar tissue, muscle spasms, arthritis) as well as more dramatic ones like herniated disks, scoliosis, spinal stenosis, and joint degeneration, do not experience pain. There's no clear correlation between findings on x-ray or MRI and subjective pain experience. None.*
Second, I remind myself that my lower spine, from L4 to S1, has been bolted with titanium and fused. There are no disks, no pressure on the nerves, no structural instability. There is nothing causing compression or damage on a level commensurate with the pain I feel.
Third, the pain in my body doesn't act like pain from an injury or structural abnormality. It moves around, it varies dramatically in intensity, it disappears completely sometimes, it is impacted by the position I am in and the activities I engage in, and its often worse when I am upset about something. None of those facts is consistent with a purely structural cause. If tissue damage were causing the pain, it would be consistent, like a broken bone or other injury, or like the pain I had following surgery. As healing happens, structural pain lessens in a predictable pattern. That is not true of the chronic pain I have experienced.
Making the case will be a different process for every person, and it cannot be rushed. First and foremost, structural causes must be ruled out. Only a thorough medical work up can determine whether or not there is an injury or other problem that needs to be fixed - a broken bone, torn ligament, a tumor. Those findings are not common in cases of chronic pain but it's important that they be investigated.
The next step is to critically assess any diagnosis you have been given. When you go to a doctor with pain, they will look for a reason. They may find blood markers of inflammation, or see joint degeneration or spinal abnormalities on an imaging scan. They will then tell you that those findings explain your pain and prescribe something to fix them (medications, injections, surgery). Confirmation bias sets it - the symptoms appear and they confirm your belief in the structural cause. That belief sustains a sense of danger, of "something is wrong."
If they find nothing, they may diagnose you with a syndrome like fibromyalgia or complex regional pain syndrome. They have no cure - the only medical approach is pain management. (In a later post I'll share the story of my adventures with the diagnosis of fibromyalgia). These labels have a powerful "nocebo" effect (the opposite of placebo effect) meaning that the belief that something is wrong with you can actually trigger symptoms.
Here's a true story that powerfully illustrates the nocebo effect. In 2010, a British construction worker jumped down off of a wall. He landed on a six inch nail. It went right through his boot and came out through the top. He collapsed to the ground, shrieking in pain. He was taken to the ER where even the slightest touch by a doctor elicited intense pain. He was given a sedative and fentanyl before he was calm enough for the injury to be treated. The doctors carefully cut away the boot only to find that the nail had gone right between two of his toes. There was no puncture, no blood, not even a scratch. His brain had sensed danger and generated a commensurate amount of pain.*
You may have a diagnosis that indicates a structural cause for your pain. But it's still possible you can gather evidence that the pain is at least partly neuroplastic. For example, are there cases of others with similar findings but no pain? Or less pain? Does the pain behave consistently or does it vary? Does it move around, or get better and worse? What correlates to its variations? Based on the way it behaves, does it make sense that it's purely structural?
An 83-year old friend of mine (who is not familiar with PRT or other mind-body pain approaches) developed pain in her shoulder a few years ago. She ignored for as long as she possibly could. Eventually she was unable to move her arm at all, so she finally went to her doctor, who referred her to an orthopedic surgeon. He told her that the x-ray showed "bone on bone," meaning complete degeneration of the cartilage. She would need total shoulder replacement surgery, he said. She was absolutely opposed to surgery so she told the doctor she wanted to try physical therapy. "Sure," he said with an eye roll, "good luck." Smug bastard assumed she'd be back to go under the knife. He did not know my friend. She started an exercise program that gradually reintroduced movement, at first using her other arm to move the injured one. As things improved she increased the range of movement. After a month she was 90% pain free. She still has "bone on bone" in her shoulder, but she was more afraid of surgery than she was of the pain. She gradually convinced herself it was safe to move and use her arm. She retrained her brain to lessen the intensity of its pain signal.
With each passing day, I become more optimistic. The content of my thoughts about my body have changed. My default emotional state has changed. Even my sense of what the future holds is shifting. And these changes, in turn, are helping to move the healing process forward. I've been studying and practicing with the interplay of mind and body for a decade now. I knew my brain was powerful and that my thoughts and feelings affected pain. And yet, I'm amazed to see this much change in under a month. (You'll recall that in the 1990s when my mother gave me Dr. Sarno's book Mind Over Back Pain I was furious that she wasn't taking me seriously. She's entitled to an "I told you so" moment). And yet, here I sit.
In case you missed them, you can read the first two posts in this series here. You can also explore my earlier blog posts on chronic pain and food and body image, going back to 2019. To be notified when a new post is published, please subscribe. You can learn more about me on my website. And you can reach me at firstname.lastname@example.org. I'm also on Facebook and Instagram. And please forward this to anyone else you know who is dealing with chronic pain, chronic illness, or anxiety.