I was asked recently by a reporter, "What does CRPS feel like?
Of course I am hearing this a lot these days from friends and family, but very surprisingly in the past I have even heard this from Doctors and people working with my immediate medical care. Because I am 'living' with this pain day in day out, I forget people don't know how I feel. I think that every CRPS sufferer is asked this question and as with many people I have to think very carefully about my answer because it does depend on how interested the person asking actually is in my answer and how detailed an answer they are looking for? Otherwise I see people's eyes glaze over after the first distressing answer… not their fault - just human nature.
If they are asking what CRPS pain is like when comparing it to other diseases or conditions I usually point them to the McGILL Pain Index answer; "CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGILL Pain Index at a whopping 42!".
If they are a friend or family, and I don't want to scare them to much I simply tell them It burns, or it throbs, occasionally I will tell them it hurts constantly. After all, I have actually lost friends and family through not being able to take part in kids sports, fishing or family type stuff… and I don't want to lose any more.
Mostly, if it's family and I'm trying to protect them I don't want them to know how bad it 'actually' gets I'll spend the day in my room. I don't ever want them to truly understand how much I suffer because I realise how much they would suffer as well. Many times my answer is simply that I am sore, or I'll be fine. Once in a while I might tell them how truly horrible it is, after all, they see it in my eyes or they may see me in or on my bed for extended periods of time. But most of the time I really do try to protect them from the depth of my pain. Sometimes I say "I am fine" because I am frankly tired of explaining it or tired of answering the question every single day - as I know people are of hearing about it. My pain is the same today as it was yesterday, and the day before, and the day before that, and the day after tomorrow and next week and the week after that. I try not to dwell on it too much so I say "I am fine".
Surprisingly enough, if I had had CRPS for only a year or two I wouldn't be as skilled at hiding my pain as I am, or to that matter controlling it through the many medications and tools I have been taught. I have heard that long-term chronic pain patients get so good at masking their pain that when they need to reveal the level of pain to medical professionals, it is difficult for them to convey the depth of the pain. For us to truly let down our guard, to tear down the walls we have built up is hard because of the fear of not being able to put them back up again.
First of all, CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc. I have it in the front of my left leg, from the top of my knee to the sole of my foot, including the top of the foot and ankle.
Okay, back to what does it feel like? Well, imagine your left leg was doused in petrol, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. I sometimes sit there and am amazed that no one else can see the flames shooting from my leg and foot as the heat is so high (even if the foot is freezing cold).
The second component to CRPS is Allodynia (this is the one that has ruled my life). The Merriam-Webster Dictionary defines Allodynia as pain resulting from a stimulus (such as a light touch of the skin) which would not normally provoke pain; also: a condition marked by such pain.
So, taking that description imagine that that same foot now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is Allodynia!
How's that imagination going? Picture getting pretty vivid?
How does Allodynia affect me? Well, any normal touch will cause me pain; my clothing, the gentle touch of my wife or children, a sheet, rain, shower, pants, shoes, someone brushing by me in a crowded hallway, etc. On top of that, sounds, especially loud or deep sounds and vibrations also cause me pain; thunder, loud music, crowds, singing, yelling, sirens, , laughing, traffic, kids screaming, even the sound of a movie or game. This is what allodynia is all about.
Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to your own children playing, causes you pain. In addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia for the past 24 hours, every day, every week, every month, every year and then looking forward, for every day, every week, every month, every year.
Then on top of the pain add things like heavy depression and anxiety and then mix in the many side effects of the medications I take, like brain fog, constipation and skin rashes to name a few.
This gives you a window into the world that I, and more and more people suffer in everyday - I hope it gives you a better understanding of why sometimes I can't go out for a coffee, or why at times I cannot be around my two year old, or why I can't go fishing anymore…
