On Constant Pain

Living with Complex Regional Pain Syndrome (CRPS) sucks ass.

As I have mentioned, I am disabled by a condition called Complex Regional Pain Syndrome, or CRPS. I have it in both of my feet and ankles, and I thought that I would try and distract myself from this constant pain today to attempt to sketch a portrait of the condition that has ruined my life

The McGill Pain Scale, showing how CRPS pain compares to things like “unprepared childbirth.”

The first thing that you should know about CRPS is that it is the worst pain that you can possibly feel, for no reason, all of the time. Some people get it after an injury or surgery, but I was just lucky, having the condition pop up spontaneously out of nowhere. It's nickname is "the suicide disease," because the pain that it causes drives many sufferers towards that fate.

To say that the pain defies explanation is not entirely true. I try often to describe it to anyone who will listen. The foundation of the pain, for me, is a simultaneous feeling of burning and pins and needles. These two feelings never go away. They get worse, at times, but they are always there. It's like my foot is being held while it is asleep too close to a fire.

The second level of pain is twofold. One is random, triggered by any stimulus or no stimulus at all, and the second is use based. I can feel everything that touches my feet about 100 times as distinctly as before I had the condition. Stepping on a cord causes me to scream. A tiny pebble on the floor becomes a big obstacle if I were to step on it. I am aware constantly of the sensation of my socks on my feet.

So random stabbing cramps and pains constantly disrupt my train of thought, and using my feet for their intended purpose causes extreme discomfort. Thus my body is atrophied from lack of use, because using my body causes a symphony of painful feedback.

An attempt to visualise the pain of CRPS with AI. Generated with Google Whisk.

I do physiotherapy exercises three times a week that are so simple that they seem laughable to my former self, but I find myself sweating and winded at the end of the sessions from exertion. Going up and down one step ten times sounds so simple to me, but I really struggle with it.

I used to run a 70 acre farm with over 100 animals before this disease took over my. life. My body was a sharpened tool that I could count on, and I took this freedom for granted. My body created life twice, and I consider that my greatest accomplishment.

Due to nerve damage in my feet, I have a lack of proprioception, or where my body thinks that it is in space. Some of my simple exercises are simply tapping my toes to the front, side, and back to try and reorient my body in space. It's not as simple as it sounds when your body doesn't do what your brain is telling it to do.

My feet feel like I have just run a marathon from the moment that I wake up. The ache of sore joints and muscular fatigue feel like a fresh sprain. Standing on one foot or up on my tiptoes is a real challenge, and my balance has been truly affected by the condition. I have had 10 falls in the past year and been in the hospital far too many times.

The pain is so severe that it causes nausea and vomiting. It takes my breath away. I faint from pain. The dog grazing my foot gets yelled at. Stubbing my toe is now a day-ending event. There is no silence in my head, there is only pain interrupted by thoughts.

“There is no silence in my head, there is only pain interrupted by thoughts. “

The overwhelming feeling I experience is lack of trust in my body. My body is unreliable and does not always listen to my brain. No amount of positive self-talk dissipates the pain. I have tried so hard to trick myself out of this condition without success. I have had countless conversations with my therapist about the state that I find myself in.

I have very little confidence in myself, well I've had that my entire life, not just with this disease. But what little confidence I am able to muster is constantly undercut by the disfunction in my nervous system. I try not to let pain become an excuse that keeps me from doing what I want to do. Most things I accomplish are simply distractions from the pain.

There are the things that I know intellectually about my condition, and then there are the feelings that I can barely control when I think about my situation. It's not fair, of course, and it's not my fault. But the brain is primed to blame someone or something when bad things happen. The uncertainty is one of the worst things about it.

I've tried every treatment available to me for this and had little to no relief. Pain medication makes it so that I can live a little, and I am dependent on it. I've had to adapt and change almost everything in my life to accomodate for my physical failures. I'm in a number of Facebook groups for CRPS, and while it helps to learn about other people's experiences, no one seems to have good news to share.

I try and focus on the little bits of progress that I accomplish and not think too much about the backslide toward overwhelming pain. I can now do my physio routine with less breaks, and the movements themselves are marginally easier as time goes on. I can now put a blanket on my feet sometimes. I have safety equipment that makes my day to day life safer. I can wear shoes. I've figured out how to take a bath without falling. I'm not suicidal.

I often describe experiences as 'humbling' that most people wouldn't think twice about. I've had to learn to shift the goal posts in my life depending on how I am doing that day. I never answer honestly when someone asks me how I am doing. I avoid thinking about my body almost as much as I avoid seeing it.

I try not to dwell too much on the pain, but some days that feels impossible. How do you ignore something like a screaming nervous system? The pain is worse at night, often keeping me awake without rest. I sleep when I can, and keep myself busy when I can't. I attempt to ignore the constant burning signals from the lower half of my body.

The pain goes all the way to my knees but the pins and needles go all the way up to my waist. A year ago, my face rapidly went numb. I've gotten used to it, and I no longer slur my words after lots of practice speaking with my newly numb lips. My doctors aren’t sure what's causing that, but have diagnosed me with a Functional Neurological Disorder alongside the CRPS. I try not to worry about what causes what, focusing on taking care of the body I have in the state that I am in.

I haven't been in the upstairs of my house in a year, I have only driven my new car five times, and I have to use a walker now to get around. I feel trapped in my house a lot of the time, but I try and make the most of it. I also feel trapped in bed a lot of the time, and have found ways of making that fun and productive. I have help and am on the path to finding more. It could be worse.

That's an awful but necessary mantra in my life. Could Be Worse. There are people who have their limbs amputated because of this condition, only to find that the pain has become a phantom in their nervous system. A walker is better than a wheelchair, for now. I am hopefully converting my car to hand controls so that I have some independence. I got a quote yesterday for a stair chair, reminding me of the commercials that I saw as a kid.

I mourn the body that I used to have before this, the body that gave me my perfect children and got me this far in life. I miss doing physical labor and the pleasant feeling of grass on my feet. This condition has had a profound impact on not just my body but my mind and my outlook on life.

So that's a bit about what I am going through on a daily basis. It's a challenge, that's for sure, one I am not yet grateful for having faced. It's not poetic, nor is it fair, but it is my life, and I have to try and keep on living it.

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Today is a bad pain day, so I thought that sharing this would provide an outlet for being stuck in my bed and body. Everything that I do at this point is a distraction from the pain or working towards a better life for my little family. Please subscribe to learn more about the complex struggles of living with a chronic illness.

LV
KS