I’m a few years into my CRPS, and I recently had my first surgery since the CRPS really settled in for the long haul. I wasn’t sure what to expect, and had both read about independently and heard directly from some people in the CRPS community that any new injury to a nerve, even an injection, could start a new site in someone who already has CRPS. It is often recommended that people like me request pediatric needles for injection when at the hospital to minimize the chance of creating a new site for the CRPS to start in.
In the interest of education and full, embarrassing disclosure, my surgery was required because of playing Xbox with my sweetie. We had a 6-hour session of split-screen butt-kicking in Borderlands, our favorite co-op game, and I woke up the next morning with a sore thumb and wrist. When I tried to move my thumb, it would catch and then pop over to where it was headed instead of being able to move smoothly. Upon later reflection, it seems likely that this developed at least partially because I had fallen onto our tile floor not long before and had some bruising and swelling going on from that before the hours of gaming began. When my sore “trigger” thumb didn’t get much better over the next week, I got an appointment to have it looked at by the only (luckily, he’s a very good doctor) hand specialist on Guam. He took one look at my thumb doing it’s little dance and said I needed to have surgery or it would never get better. My diagnosis was DeQuervain’s Syndrome, if you’re the curious type. The surgery was a very minor microsurgery, with a 2cm incision, just to cut open the inflamed tube my thumb’s tendons were sticking in and letting it heal up with a little more room.
When I mentioned my concerns about creating a new CRPS pain site, the surgeon responded with a two-pronged argument: First, if the pain of the surgery were appropriately controlled, there would be no reason for the creation of a new pain site. He knew my information was anecdotal, and was not aware of any scientific evidence that a new site would be likely. He had operated on CRPS patients before without this happening. Second, the ongoing pain of a repetitive stress injury that was unresolved was extremely likely to create a new pain site of its own accord. This second one I found most convincing, and agreed to the surgery.
On my follow-up the next day, I was in significant pain at the surgical site. My wrist was getting a 7 out of 10 on the pain scale, my ankle only a 5. It was very strange to be having pain worse than the CRPS in my ankle. The surgeon explained that, because my nervous system is on high pain high alert, it’s extremely sensitive to new pain. He said the average person would be at a 1 on the pain scale in my place. Over the next two weeks, my wrist generally ached constantly at a little higher score than my ankle, although I found that taking a break from the brace I’m to wear until the scar tissue finishes forming (to keep the tendons where they belong) helps the pain a little, while there is not much I can do about my ankle apart from taking more medications.
At my two-week follow up, I asked how long it would take before I’d be able to tell if my wrist was going to be an ongoing problem, since it feels so much like my ankle already. The surgeon again reassured me that the pain I was having in my wrist was simply my body’s already ramped-up nervous system, and that it was normal for pain and scarring to continue to escalate for the first 6-8 weeks of healing before it peaked and began to subside, and that normally the downslope of the subsiding pain was so much more subtle than the upslope that it could take another month to notice. We increased one of my CRPS maintenance medications that is new to me and seems to be helping quite a bit. He also verified that it was okay for me to take breaks from the brace when I wasn’t using my hand, and also noted I should not be using it for something I had noticed was causing extra pain: walking my dogs. Poor Crackers is going to have to wait for more training.
That was a couple days ago, and with the increased maintenance dosage and less wrist activity I’m already having lower pain levels in both my wrist and ankle. I’ll be posting again about my recovery farther down the road, but at the moment I feel hopeful that I’ll heal up from this surgery and be back to playing Borderlands again in a couple months or so. If you have CRPS or another chronic pain condition and are in need of surgery, do be prepared for it to hurt a lot more than it would for someone without CRPS. Also prepare for the emotional tendency to worry about this pain increase as something permanent, just like your existing pain. But know that just because it is hurting a lot does not indicate that you have a new CRPS site–high pain in this situation is normal for us. Or as normal as we get, that is!
In closing, I have the pain scale from one of my favorite blogs, hyperboleandahalf.blogspot.com. Because no matter how much pain I’m in, this always makes me smile.