As I began to move more, I started to notice the pain would get worse with movement. This is when I started holding my arm and tried to avoid moving it. This was the beginning of a bad thing! With CRPS you have to keep moving, not moving only makes CRPS worse! This is hard though, I mean think about it…if something hurts what do you do? You avoid it, right? My arm hurt when I moved it, so I stopped moving it. Later on, I found out that one of the muscles in my inner arm had hardened to feel more like a bone. This was most likely from not continuing to move. I’ve read time and time again that the best treatment for CRPS is movement, but that’s so hard when that’s one of the main things that causes your pain to increase.
For me, repetitive movement just kills me! Things like typing, clicking a mouse, wiping counters, vacuuming, etc. I’ve had to learn to take breaks when doing anything repetitive. This blog, for instance, I start a post in the morning. Sometimes I’ll write throughout the day, when time allows. Then, finish it up around bedtime so that I’m not typing all at once. For me, learning to pace myself has been especially hard as I’ve always been a go getter. I’ve never been one to need to sit and rest or take breaks, I’ve just always gotten stuff done! But if I overdo it, I will be paying for it for a long time.
I was looking in the mirror one day and noticed a raised, reddish colored rash on my chest. Then, it became itchy like I was having an allergic reaction! I wasn’t sure what it was and, at this point, I hadn’t read that this was a symptom of CRPS. I get to reading online and find out that sure enough, this is a symptom of CRPS. I also read that many people have rashes pop up prior to CRPS spreading. This was also true in my case, it quickly spread from around my incision site, across to the middle of my chest, stopping at my sternum. This is when I started having increased trouble sleeping. At this point, I was able to sleep in my bed instead of the recliner. But every time I rolled over on my right side, which just so happened to be the side I typically slept on, I would have jolts of nerve pain that would wake me up and cause me to yell out in pain. Many nights I would get up out of bed and just go sit on the couch and cry, trying not to wake my husband, Skylar or my daughter up.
My chest and around my incision will swell, which is also a major symptom of CRPS. My chest will actually swell up where it covers my collar bone, which normally sticks out. Around my incision will swell up like there’s an egg under my skin. And you can’t imagine the pain that comes along with these, what I call, flares. With CRPS, like I’ve said over and over, you are always in pain. But certain things can increase your pain even more. For me, things like overdoing it, the weather, light touch, and stress are big influences on my pain. Any of those things can cause my pain to flare up and just completely zap me. I’ve read that CRPS has auto-immune tendencies, and this would be one of those. When in a flare, your energy is nonexistent! Anyone that knows me, knows energy is not something that I have ever lacked!
Another auto-immune tendency of CRPS is the brain fog, it is so real! Some days I’m on my game, others I have to really focus and think! During a flare, this is at its worst! Not only do you have the brain fog to deal with, but who can think while experiencing excruciating pain?
I wanted to write this post to show that while CRPS symptoms are mainly about pain, because the pain is so intense, that’s not the only symptom. There’s so much more that comes along with it. I’ll get more in detail of each of the things listed above in later posts. So, stay tuned!
Ami’s Journey 