This post is the first in a series of posts about my life-changing experience of pain neurophysiology education. To see a list of all of the posts, click here!
Part One: Hitting Rock Bottom.
A few years ago, I was at one of my lowest points. A few things happened in my life, all within a short time period, that caused my pain levels to flare up. I had been attacked by a client at the group home where I worked. In the attack, I was thrown against a wall, which, of course, was not great for my neck and back pain. The week before, I had sprained my ankle and was having trouble walking. I was also beginning to experience the beginnings of chondromalacia patella in my right knee.
It was a horrible time in my life. I was going from doctor to doctor, begging for someone to help me, to give me a diagnosis. I couldn’t understand why I was in so much pain; it was like it had taken over my whole body. I was afraid there was something wrong with me, deep down, at a cellular level. I started reading about something called fibromyalgia online, and was frightened by what I read. I realize now that I what I was reading was out-of-date information, but at the time I became very frightened that something in my body’s chemistry was off, causing problems with inflammation.
The absolute worst moment was when I went to see a pain specialist at a highly-regarded hospital near me.
This guy looked great online. He actually listed fibromyalgia amongst his clinical interests. He wasn’t just a random doctor; he was the head of the anesthesiology department. He also had a law degree, which I figured meant he was really smart.
But he was no help at all. Most of the appointment was conducted by a resident (medical student in training). Because he could see many of my records from other physicians electronically, he didn’t seem to think he needed to do an examination of his own. Not once did he walk across the room and look at my back.
I tried my best to express how bad things were. I explained the fears that had plagued me for months, that I was afraid I had fibromyalgia, or a problem with inflammation. Despite the fact that he’d listed “fibromyalgia” within his clinical interests, he seemed to have no idea what I was talking about. I also asked him if he could give me some medication for the pain. His eyes got wide, as he suddenly “remembered” that every new patient was supposed to receive a drug test.
I left that day with a lump in my throat and my pride wounded. Somehow, this whole appointment that I had been looking forward to for so long had boiled down to the doctor thinking I just wanted to get high.
The only good thing to come out of that appointment was that the doctor referred me to physical therapy at another hospital in the area. Without going into any detail, he said that a lot of his patients had had “luck” there.
I had actually been to physical therapy at the same hospital a few years earlier, when I had first hurt my back. I had really liked my physical therapist at the time, so I decided to go back. As luck would have it, they scheduled me with the same guy.
I filled out my intake paperwork, following the instructions and putting an “X” on the little diagram where they ask you to mark the areas where you have pain. I must have put about twenty X’s on the paper.
When Tim saw this diagram, he paused for a moment. “Hold on a second,” he said. “I’ll be right back.”
When he came back into the room, he explained that he’d asked the secretaries to make a few changes to my referral. He explained that the number of X’s I’d placed on my paper was alarming, that it was a sign there was something more going on with me than just “back pain” or “knee pain.” Instead, there was an underlying factor, causing me to experience pain in so many parts of my body. It was, he said, my nervous system.
“You’re really going to have to trust me on this,” he said. “I know it’s confusing to hear at first, but when people get like this, it’s because their nervous systems are processing pain differently. There’s no way you have injuries in this many different parts of your body, when you haven’t been in a car accident and you’re so young. I am going to teach you about what’s going on. Once you begin to understand that all of this pain is coming from your nervous system, we can start to work with that. You’re going to have to give me the benefit of the doubt in the beginning, but we really can help people get better.”
Click to continue to Part Two.