Last Saturday, I entered a pain flare. It’s the worst one I’ve had. Despite pain meds, my pain was so high that eating made me sick, which made my pain higher. It took me several days to get through the flare. And it got me thinking about our brains and nervous system. I have spent two years trying to convince my body that my hip isn’t broken, without much success.
When I started seeing this pain management doctor last June, one of our first conversations was his expectation for me to explain what my pain felt like. I’ve had a broken arm. Yet, the pain in my hip is worse than I remember my arm feeling like. It was this doctor that told me that it doesn’t matter that my hip isn’t broken. If my nervous system is telling my brain it is, it’s going to feel like it is and that is essentially all CRPS is.
My sympathetic nervous system is convinced that my hip is broken. The result being that it sends constant pain signals to my brain and my brain responds with an SOS to every other system in my body, to try to heal the broken hip.
And this SOS is a bad thing, because my hip isn’t broken. So my body is trying to heal an injury I don’t have, thereby causing more damage. And because my sympathetic nervous system is having these issues, every injury, even minor ones threaten to spread the CRPS to other bundles of nerves within the system.
A pain flare is caused by activity, in this case, sleeping on our camper mattress. The mattress that came with our camper was basically a six inch futon mattress that sits on a sheet of plywood. It was never comfortable, but I’ve always had issues with springs in mattresses, so before the CRPS moved to my hip, it was tolerable for me. Now that it is in my hip, sleeping on it is the equivalent of sleeping on concrete for me. I used to sleep on the left side when I was up there. It bothered my shoulder, but spared my right hip. Unfortunately, it’s moved to my left hip, so that’s not an option anymore.
When I woke up Saturday morning, it felt like I’d been repeatedly run over. I knew I hadn’t, but I couldn’t convince my body that I hadn’t. Both hips felt crushed. My left shoulder, where I also have CRPS felt crushed, my right arm where I also have it, felt crushed, and my back where I have a few disks going bad, felt crushed.
Despite taking pain meds, when I ate Saturday, I was in so much pain it made me sick. We came home Saturday night. I was going to sleep on the sofa if we’d stayed, because while it’s awful, it isn’t as bad as the bed. Unfortunately, despite coming home, the flare continued. Sunday, I still felt like I’d been run over with a truck. I mediated, I took pain meds, I tried to relax, I tried to do everything that I was told to do. And when I ate, I still got sick my pain was so high. This continued through Monday.
And on Tuesday, I decided eating was a problem. Getting sick, regardless of where it exits, is a painful experience for me. I can’t kneel down and toilets are not comfortable to sit on for more than a minute. So, I decided that not eating was the best way to end my pain flare.
I was asked if I wanted to go somewhere, but I am aware that is not a good idea. Last September, it felt like my gallbladder exploded one night. I went to the ER in tears, running a small fever, and convinced I was going to need emergency surgery and was told I the problem was just a matter of going through opiate withdrawal – they ran zero tests. A few days later, a surgeon told me that wasn’t the problem, the problem was that my gallbladder which was hyperactive had dumped too much bile into my system. Enough that it caused pain and some other problems that she could visibly see in the tests my doctor had run after the fact when I was still in pain after taking my pain medications.
It was Wednesday before the flare calmed down enough to allow food to stay in my system. By then, I had not had food stay in my system more than an hour for 6 days. And no amount of telling my brain I was actually fine, helped. Neither did meditation. And all because my sympathetic and central nervous system are broken. J to his credit did order a new camper mattress after we got home. But by Tuesday, I had reached my breaking point, I essentially hadn’t eaten in 5 days and my pain was so high, I just wanted to give up and there was absolutely nothing I could do about it.