Self Reflective · Uncategorized

I Have a Thing. Apparently, it is a Chronic Illness

When I was young I sprained my ankle. I went to the doctors. They put me in a splint and gave me some crutches. It’s not a very exciting story I suppose, especially since I don’t even remember how this particular sprain happened. The morale of the story is that it did not go away. Six months later I still felt pain whenever I put weight on my foot. My doctor sent me to the pain clinic. I spent what seemed like an entire day being interviewed by doctors. In the end, they gave me medication and sent me on my way.

In middle school, I broke my arm. My arm healed, also a not very exciting story. This time I know that I broke it in a ridiculous way, falling from a stool. For months after it healed, I got stabbing pain from elbow to fingers. The pain clinic sent me a bad ass portable TENS unit to alleviate these symptoms. I wore it to school. I had it on all day, zapping me under my clothes. It helped the pain and my friends thought it was cool.

Then I had another accident, this time early in high school. I tumbled down a ski mountain. My somersaults resulted in nerve damage. From the base of my neck to my shoulder, and down to my wrist I had pain. Weird pain, the specifically nerve pain that presents itself in odd ways. For this, I endured months of occupational therapy to desensitize my nerves and eventually cortisone injections to alleviate nerve case swelling.

Doctors have hinted at it before, I have overactive nerves. Always spurred into a flare after injury. Yet, I did not worry about it because after special treatments the pain always eventually went away. There was always something they could suggest. I was young and resilient and in the moment it didn’t really matter. I never did my research and I never dwelled on the pain after treatment.

Two days ago, I sat in another doctor’s office. This time the pain is in my hip. This time I have a very obvious injury. This time once again there is a mechanical reason for my discomfort. After going through painful studies to determine my injury I have a confirmed labrum tear. The doctor has reviewed my MRI and tells me, I am in more pain than they usually see with this type of injury. He tells me I am hypersensitive on exam. There is a moment of sinking despair. I have heard this before. I interrupt the doctor, “I’ve been to a pain clinic.” I say it off-hand like, I’ve been there, we fixed that. With an air of “please, I don’t want to hear this.” The doctor uses a term no one had said before, pain syndrome. Sounds simple, right? Like simple enough to not be a real thing but just a thing doctors say. It doesn’t have a long fancy name. It seems like an excuse, “oh you’re in extra pain, must be pain syndrome.” Well…as much as I wished it wasn’t, it’s a real thing. A real disorder. And it just got slapped on me.

“Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.” (from National Institute of Neurological Disorders)

Boy oh boy, the term malfunction of the nervous system is scary. But I know it just means my nerves got the message wrong. Another interesting fact is that it is unknown why some people have this reaction but others with similar traumas/injury do not have symptoms of CRPS. My favorite fact; the symptoms always start as a result of an injury. It makes sense, but just imagine, people could have CRPS and never get injured enough to make it surface.

For a while, I have used terms like, “It’s all in my head.” when I referenced past experiences with over-active nerves and the lengths I went through to quiet them. Because it had been mentioned that my brain was misinterpreting pain signals or at least that was how I understood it at a young age. I mostly thought it was my fault, that I had thought my pain into existence. The way distracting yourself from a stubbed toe helps the pain go away. I thought simply me thinking about my pain was making the pain worse. I blamed myself. Turns out, I was wrong.

Let’s oversimplify things. When you fall down and bang your knees, nerves in your knee “turn on” they convey a message to your spine and eventually to your brain that you are in pain and the pain is in your knee. Once you stand up and walk it off or put some ice on the site your nerves “turn off”. What happens in people with CRPS is the nerves never “turn off” from the initial injury they stay on and keep relaying messages of pain to your brain. That is why three months after my initial injury I am feeling little to no relief.  In CRPS, nerve pain can gradually move to consume an entire limb in pain.

In CRPS, nerve pain can gradually move to consume an entire limb in pain. This is why last night I lay in bed with pain in my calf. From an injury in my hip. I still get stabbing sensations in the hip joint, but now the pain also travels the length of my leg and into my foot as well.

I have broken innumerable bones in my younger years. The pain from a broken bone is sharp, deep, and extreme. But, when not moving the affected bone, there is very little pain. Once a cast is on, you’re golden, without movement to bother the bone there is no pain. So even when I was screaming in pain, the longest it ever lasted was a couple of days. With nerve pain, it never abates. The pain is a constant companion. I would like to think my pain threshold is high, but when the pain scale is tipped around a 7 for hours, days, months now, it is an entirely different story. Add to the mix extra stabs raising the dial above what I thought was a 10 and I am a disabled mess. There are moments in my day when I cry out and double over from the pain.  I am tired all the time. There is no getting away from the pain, there is no getting away from the exhaustion.

A new doctor will be carefully picking areas to press a needle under my skin, hopefully, to help my pain take a break. I would kill for a good nights sleep.


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