I get a lot of questions about Complex Regional Pain Syndrome. Some are difficult, some are simple, and some are just plain ignorant. These questions happen throughout the day, every day. Ignorant questions typically come from strangers who are CLEARLY uneducated assholes. If you are reading this and thinking to yourself, “what type of question did I ask Alexis?”, don’t worry about it. I don’t let questions get to me. I take them as a chance to educate. So, why am I talking about this? Well, I want to talk about a really good question I get asked pretty often. What is the worst part of CRPS? I like this question because people are usually surprised by the answer. Go ahead, try to answer this……I’ll wait……..Nope! Not the pain. Confused? I was too.
There are multiple aspects of your life that is affected by CRPS. If you’ve been reading my blog, then you already know a few. One of the things less talked about with a pain condition is the mental toll that it takes on you. I’m not necessarily talking about depression, anxiety, ptsd, and so many other conditions. I will talk about that and my other condition another time. I am talking about the physical will and brain power to deal with it on a daily basis. The mental strength to make yourself get up, fight the pain, and continue your life. I know this may be confusing now, but just stay with me. I am going to explain why I believe that the pain isn’t the worst part about CRPS, but let me explain how the pain occurs and what it feels like.*
Pain: Burning from within
Complex Regional Pain Syndrome is a neurological disorder that occurs between the brain and the pain receptors to your body. I am going to (for lack of a better word) dumb the complexity of the condition because that’s the best way I understood it at first and I was the freakin girl who had it! There is an initial injury to the body that causes the brain to send pain signals to that limb. This caused the body to do many of the typical reactions it does when there is an injury (swell, turn a color, immediate pain, etc). But what happens with someone who has CRPS is that the brain gets stuck in that cycle. It is telling the nervous system that there is an injury or threat to the body even though there isn’t one. Causing immense pain to a limb, limbs, or whole body despite no medical test showing “proof”. This cycle is what causes the intense, burning and deep deep ache that my close friends and family have heard about. I have explained CRPS pain in this way: Imagine your limb (or wherever is affected) is on fire. Then add on top of the surface fire, there is a deep pain that feels like it is almost in the bone, it is a type of pressure and ache that is indescribable. The type of burning is the worst sunburn you’ve ever had times a million. You know- like worse than that horrible sunburn keeping you up at night? This along with the more typical nerve pain is what is responsible for the CRPS hell. Hard to read? Well trust me, I don’t like writing it, let alone living it. This type of pain stays (in my case for years) at a dysfunctional level. Someone suffering from this would do anything and everything to stop/lessen the pain. No matter WHAT or WHO they lose. That’s what brings us to the worst part of it all.
You Must ‘DO’ to be saved
When you (or someone you’ve known) had a broken bone in your lifetime, what did you do? I am sure one of the first things you thought of was rest. That is what we are taught ever since we were born- right? If you break something- rest. If you are sick- rest. If you are exhausted- rest. That makes practical sense to everyone’s mind. What if I told you that with CRPS, this is the worst thing to do for your disease? Pretty weird right? Going against every human nature to rest while your body heals. Resting for CRPS is like continuing that soccer game on a broken foot (yes I’ve done that too). I will try to explain this the best way so that people who don’t have CRPS can understand the worst struggle- but you really have to have the condition to completely get it. So, read slow. Follow along. Reread. Ask questions. That’s all I ask.
Now that you have just read how CRPS occurs, I can explain why ‘resting’ is not good for the condition. I want to preface this by saying I am not talking about breaks. Breaks are completely necessary and can help anyone with CRPS make it through their day. But this type of resting I am talking about here is laying around, not doing much, and sleeping until it gets better. I am sorry to tell you, but if you lay around waiting for CRPS to get better- you’ll be laying around the rest of your life. I am sure if you have it you probably think I’m being a negative bitch. But CRPS can’t just go away out of nowhere. You have to work for it. And let me tell you work is an understatement. Let’s say you have CRPS. Your body is in this constant cycle of believing there is an injury to the body even though there isn’t one- causing immense pain. Well one day you go to write. You have CRPS in both hands and arms. You realize that it hurts to write. So, you decide to stop writing for a little while until you get it figured out by a doctor. Then, when you go to write months later, you realize that your body just won’t make the movement anymore. You are now not able to write. What happened? Well, that decision you made to stop writing the day it hurt, was a confirmation to your brain and body. In that moment, you told your body that writing causes that danger to the limb- hence forcing your body to make the decision that it can’t do it anymore. I know what you are thinking. Then freakin write Alexis (because let’s all be real, this hypothetical situation is about me). That is the hard thing. You (I) literally could not. Every little thing in my being and body would not allow me to write. Eventually my body forgot how to use what muscles to control and write with a pencil causing me to have to relearn it. I think of it as a check list my brain is going through. That hurt yesterday- check never doing it again. Piece of clothing hurt- check never wearing it again…..and on and on and on until there isn’t much of your life left that’s doable. I’m sure you’re wondering how you stop your brain from not allowing daily tasks. And this brings me to my point:
You must find everything that causes pain, stress, worry, tremors and do them. I know, I know -what the actual hell. Isn’t this supposed to be a positive blog?!?!?! Yeah I’d love this to be positive- but I also want to be real. And yes, this even hurts to say. This is the hell. This is the absolute worst part about this disease. Unlike most other conditions- the things that hurt us we actually need to do in order to get better. If you don’t have CRPS, imagine if I told you the way to get over your fear of fire is to light yourself on fire. Every single piece of you would be against that. That’s what CRPS fighters have to go through on the daily. Many still don’t know about this part. I was only made aware when I went into treatment this past winter. Not only do we need to do the things. We need to do them repetitively. This will eventually prove to your brain that the activity/item is not physically damaging the body. The brain will then stop sending pain signals. We are talkings all day, every day. Lighting yourself on fire over and over again until it doesn’t bother you anymore. Do the things that hurt. Holy shit. What a scary thought. That is what makes this disease living hell. THAT is what causes it to be known as the suicide disease. THAT is why so many people stay stuck for years on end. It brings me to tears writing this now because it’s such a scary idea and I’m the one doing it.
Now if you or someone you love has CRPS know this. They need support, they need encouragement, and they need proof that they can do it. Some may need family/friends support, some may need occasional medical support, but most (like me) need inpatient support. 24/7 encouragement and support from a group of people who give you their lives for as long as you are there. Because you are doing one of the hardest things some humans ever have to go through. You are finding all the things that hurt and doing them. But I have a secret for you……YOU ARE DOING IT. If you or someone you know has CRPS and is reading this, you are doing it. As someone who goes through it- it is hard to wake up in the morning. Sometimes it hurts. But if you are reading this now, you freakin got up. WHAT A WIN.
Who would have ever thought ‘doing’ would be such a life-changing and terrifying fight? But just like any other fight it is tear-filled, bloody, emotional, but absolutely beautiful. I just want to ask one thing of you. When you do that one thing that hurts or scares the shit out of you, record it for me. I’d love to see you be a badass.
Remember. Everyone’s pain is different in CRPS-affected individuals. This is only my experience with it.