When Tolerating Rheumatoid Arthritis Pain Creates Pain
Living in pain has been my reality since I was two years old when I was first diagnosed with juvenile rheumatoid arthritis. It has been a state of being, instead of an aberrant event that interrupts my life.
Tolerating severe pain
When I was young, pain wasn’t the fifth vital sign in medicine so it wasn’t talked about much. Grinning and bearing it seemed to be the best way to go through life, so that’s what I did.
It wasn’t until I was in my thirties and experiencing the worst pain of my life that a doctor opened up a conversation around it. That conversation ended in me taking an opioid for about a year at night until I got to the point that I could get four hours of uninterrupted sleep.
My sleep was severely impacted
I always told myself that as long as I wasn’t holding back tears and wanting to scream, that I could deal with it on my own. It took years to realize that I was wrong.
Recently, I got a watch that tracks my sleep. I expected to see that my sleep was less efficient than it should be given the level of my pain, but I was aghast when I found out that I was lucky to get an hour of deep sleep. My average was ten minutes when, on average, people need one to two hours of this type of sleep. Deep sleep is necessary for the body to repair the damage done every day. And with inflammation, deep sleep is vitally important.
It made me really think about my pain and what it has been doing to me all these years. It also made me understand why, when I started seeing a new rheumatologist five years ago, she told me I had chronic pain syndrome, something I’d never heard of.
What has pain done to me all these years?
At the time, I just shrugged my shoulders and didn’t think too much about it, but now I’m realizing that this new distinction made sense. Decades of being in severe pain change the nervous system, and makes it easier for the body to feel pain.
The reason is that our bodies are constantly changing in response to our internal and external environment and, when that environment is constant immune reactivity, the body gets good at triggering pain signals, compounding the pain. It’s a vicious cycle and one that is very hard to counteract when you live with chronic inflammation.
So now I’m living with a reality I never expected. Being so stoic helped in some ways - I wasn’t left out as much, but in other ways, I was unwittingly training my body to create pain, and now my sleep is reflecting the bigger issues that come with this.
Prioritize lowering my pain levels
So now, I prioritize bringing my pain levels down every day instead of grinning and bearing it.
Medication is only one part of this, most of the things I do involve exercise and rest, and modalities like heat and cold. I know that over time this will help retrain my body to relax more, and this will help my pain. It’s a never-ending dance, but like many things RA, a dance many of us do together.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?