I’m back to wondering if I really have CRPS. I’m preparing for a visit with my pain management doctor and in the process I have been cataloging injuries from my migraine/pain journal over the last 30 years. After all, everything is connected within the human body.
Not for the first time, I’ve wondered if the real problem is my spinal cord and my central nervous system by extension. In April 1988 (I was seven years old), I decided to be daring, I stood up on one end of a teeter totter in my neighborhood park. One of the neighbor kids was on the other side and I was off the ground as I stood.
And then that little asshole jumped off. I slammed my wrist into the handlebar and fell flat on my back onto the concrete of the playground. Rubberized playgrounds weren’t all the rage yet and most parks had their equipment sunk into concrete or asphalt. This one was concrete.
In May 1989, I had my first migraine. I spent three months throwing up and then collapsing onto the bathroom floor every afternoon that summer. It hit at the same time every day. Once I collapsed and slept for a few hours, I’d wake up feeling fine until the next afternoon when it would happen again. Worst summer ever.
I was told the migraines were due to puberty and I’d grow out of them. I didn’t. And migraine prevention medications (Topamax, Depakote, etc) didn’t make them less frequent or less severe.
In December 1994, I began to experience pain and swelling in my right hand and forearm. Eventually, that pain would become permanent and would feel like it was constantly being given a small current of electricity. I was told it was an arthritis like condition as a result of breaking my wrist when I was 7 and I’d just have to learn to live with it.
Over the years it would get better or worse, depending on the time of year, the weather, and what I was doing. But I never experienced any physical changes in it, no lesions, no hair loss or damaged hair follicles that made the hair look thin or break easily. I still don’t have those symptoms in my right hand and arm. Just the pain, it often feels like the bones have been crushed and it gets more intense depending on the time of year and weather and what I am doing. It also occasionally swells up.
In 2003, I slipped on some ice and damaged my left shoulder. I had to have surgery to repair it and I still don’t have full feeling in some of my fingers on the left hand. And my shoulder often hurts, even when I haven’t done anything to cause it discomfort or pain. But it doesn’t feel like the bones have been crushed.
Then in 2015, I fell out of a raft while trying to dislodge a canoe from a tree root ball so we didn’t slam into them, capsize them, and drown both women in it.
I started having back problems more often as well as pain in my lower legs. Sometimes, it feels like the bones in my lower legs have been smashed with a sledge hammer.
I was given SI Joint injections for the first time to treat it. They worked fairly well. And we moved to SI Joint injections with Facet Injections in my lumbar spine. By this time, I was exclusively using Butalbital for my migraines. It worked better than any of the migraine medications I’d ever taken, except DHE.
And the facet and SI injections decreased the frequency and intensity of my migraines, the first thing to ever do that. My neurologist suggested that the reason my migraines had been so hard to treat was because they weren’t migraines in the normal sense of the mediocre understanding we have of migraines. Perhaps I was manifesting my back pain in my head in the form of migraines. If so, maybe I didn’t injure my back when I went under the root ball, maybe I injured it in 1987 when I fell from the teeter totter and broke my wrist. Maybe that fall coupled with the deformity I have of my SI joints due to being born with both hips out of socket, are the cause of my migraines….
Which makes me wonder if the pain I’ve been experiencing in my arms, legs, spine, and now my hip, isn’t possibly related to my spine. Perhaps those limbs don’t hurt in the traditional sense, maybe the nerves that go to those limbs were damaged at my spinal cord and it just imagines they hurt and therefore sends pain signals to my brain about it.
Oh wait, that is pretty much what CRPS is. The nerves think they hurt, so they become hyperactive in an attempt to heal themselves… But what if the real spot of my CRPS isn’t in my arm or shoulder or hip or lower legs? What if it’s in my spinal cord? Is it possible that all the spots I seem to have pain, aren’t really in pain and it’s my central nervous system (located in the spine and brain) that have been damaged and therefore manifests the pain in other places?
This might explain why I don’t have visual changes to my skin at my arm, even though it’s tingled and hurt for 24 years. Could the same mechanism that exhibits itself as a migraine be why I have lower leg pain even though I don’t appear to have CRPS in my lower legs? Also, could this be why none of the alternative therapies for CRPS have worked? Could this also explain why Ketamine and Butalbital work for me when steroids don’t? Both depress the central nervous system. Butalbital is a barbiturate, a “downer” in street drug lingo.
Despite having developed sway back as an adult (I did not have scoliosis as a kid) and having two bad discs in my lumbar spine, I rarely have back pain. I should in fact have it very often, due to the scoliosis and being a top heavy female. Sometimes, it’s hard not to wonder if the problem is my spine as opposed to the places where I “experience” pain.