I was asked recently at my Doctors office by a visiting intern, “What does CRPS feel like?”
This is a question I get asked quite often by the media as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question now and again and you have to think of your answer by the way the person asked. How interested are they in your answer and how detailed an answer are they looking for?
If they are asking what is CRPS pain is like in comparison to other diseases you can give 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!” (look for “causalgia” on the chart).
If they are asking as a friend and you don’t want to scare them away, you simply say “It is the most pain I have ever experienced, it hurts constantly.” After all, many patients have already lost a great may friends because of the disease and they don’t want to lose more.
If they are a loved one you try and protect them. You don’t want them to know how bad it is. You don’t ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, “I am fine. It is nothing I can’t handle.” Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. Sometimes you say “I am fine” because you are frankly tired of explaining it or tired of answering the question every single day. Your pain is the same today as it was yesterday, and the day before, and the day before that, and the day after tomorrow. You try not to dwell on it too much so you say “I am fine”.
If you have only had it for a year or two you aren’t as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more. I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again.
So, having said that, what does CRPS pain actually feel like?
Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better.
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.
What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, 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. Now imagine it both hands, arms, legs, feet; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.
The second component to CRPS is what is called Allodynia.
Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand 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!
Picture getting pretty vivid?
Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. 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 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 24 hours a day, every day, for months, years, and longer.
There are many other symptoms which you can read about in our CRPS SYMPTOMS section but these are the two main ones that most patients talk about the most.
I hope this helps you understand what we deal with every day.
Peace, Keith Orsini