“I feel like I have no skin, only flesh showing, and it’s being rubbed or scratched constantly. My leg feels like it’s made of solid wood, and my skin is too tight. Someone is ripping at my arm, hand, face and foot with razorblades constantly. My fingers are made of metal worms that move constantly. My arm and other bones are broken and sticking out of my skin.”
“I cannot let air blow against my affected side because it hurts too much. Someone is constantly slapping and clawing at my face, arm, hand, leg and foot. It feels like I just pulled my arm and hand out of a meat grinder. I have sharp metal objects ripping at me all the time.”
“I have been burned severely to the point of melted flesh, and someone is clawing at it. Basically, it is whatever you think it is at any given time, as it feels like all the different types of pain you can imagine, all happening to you all at the same time. I know that’s difficult to imagine, but it’s difficult to explain the evil, horrific, non-stop ripping, clawing, beating, burning,…on and on…AND IT NEVER STOPS, EVEN FOR ONE SECOND. IT’S CONSTANT AND WILL NOT STOP, AND YOU ENDURE IT FOR THE REST OF YOUR LIFE!”
This is the living nightmare of Robert, who had a stroke when he was 29 years old. This definition of hell, as bad or worse than any of Dante’s tortures, is so far beyond our experience that we can’t imagine it is real.
The inability to imagine this sort of pain is a problem. Because healthcare providers are unlikely to see many cases – CPS is, thankfully, relatively rare – they often dismiss it as a psychiatric problem. Patients are told they are making it up. Sometimes they are accused of faking it. And sometimes they are told to stop being so weak.
“It’s embarrassing how ignorant physicians are about central pain,” says Dr. Kenneth McHenry, a physician who developed CPS after a spinal cord injury 14 years ago.
One thing is clear, it’s impossible for someone else to truly comprehend the experience of someone with CPS. Most of us simply don’t have a context from which to imagine central pain. When we think of pain, it is localized and we know it won’t last forever. While it may be intense, it responds to some treatment or another and eventually goes away. Even migraine sufferers find some relief. None of that it true for people with CPS.