A Day in My Life With Complex Regional Pain Syndrome

I, like many others, had never heard of reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) until it actually happened to me.

After the third doctor I went to said that is more than likely what I had, I remember Googling it on the ride home. After many tests and even more treatments, I was diagnosed with this mysterious disease, but I still wasn’t sure what was happening to me. I have done a lot of research, and I am still learning new things every day. In my experience, most doctors do not know very much about RSD/CRPS, so how can other people?

In the world of invisible illnesses, it is almost impossible for people without them to know what it is like to be you. I look fine. I look like a 30-something woman who is going about her day. I may look a little strange because I am pretty much always carrying my right arm around, but for all intents and purposes, I look “normal.”

Now let me tell you the real story. If I am out of the house, I probably have makeup on or my hair looks halfway decent. To look halfway decent required a lot of effort. I winced, took breaks, sighed and cursed the pain gods many, many times. I am also sweating from not only the effort but from the pain. To top it all off, I am nauseous, because I am nauseous almost every day. Yay, now I can leave the house. If I am riding as a passenger in a car, I have to deal with a passenger-side seat belt. This is constantly a problem because if the seat belt touches my collarbone, it hurts, and then causes a domino effect, making my pain worse than it already is. Let’s say I get to my desired location — now I will carry my RSD-affected right arm around with my left hand. I have been doing this for what seems like a long time, and the reasons are: because it hurts just hanging there, I feel like I am somehow shielding it and I am likely having a tremor.

You may see me out in a store or at the library, and I may seem fine. I am not. I am screaming on the inside. I am trying not to think about the pain. I am on fire, but you can’t see my flames.

A lot of the time staying at home just sounds so much better. But, the same thing happens no matter where I am.

So I have painted a slight picture of what I deal with, and now I want to talk about listening. People who do not have RSD/CRPS do not know what it is like. I constantly hear other people tell me their arm, leg, finger, toe, head, neck, etc. hurts, and I am positive it does. Does it feel like you are literally on fire and there is nothing you can do about it? Probably not. Does it feel like you have 10,000 angry fire ants crawling in your veins? I hope not! Does it stop? I really hope it does.

Mine does not.

There are days when the fire is a slow-burning flame and the ants aren’t as angry as before, but it never goes away. There has never been a day when the swelling wasn’t pulling at my skin, or the intense throbbing wasn’t another heartbeat I was feeling. There isn’t a day when sitting in a chair or lying on a bed wasn’t causing me actual pain. When I make a passing comment of “my arm/shoulder hurts,” it doesn’t just hurt — that’s just all I said.

Sometimes people with these invisible illnesses just need to be heard. I know I try to explain it to those around me, and even though they may try, they do not know. There is no way to know unless you live it. I know I am seen as ungrateful, a complainer, lazy, and that I exaggerate, but those people don’t know. I am glad they don’t know the hell I live in because I wish I didn’t — but they also don’t listen. They hear you, but they don’t listen.

In life people generally just want to be heard. People with chronic pain need to be heard. We need to tell people that something hurts without hearing back that something on that person hurts, too. We aren’t being narcissistic, or at least we are trying not to be, but it’s not the same. We don’t know the pain you are in, but you most certainly do not know the pain we live with every second of every day. We all just need to listen more, and those without chronic pain also need to understand more.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.