Question
Hello Mr. McKinzie,  I am a 35 year old male paraplegic since 2000.  My level of injury is T11 & T12.  I was run over by a truck while walking back to my car one night.  I certainly know that I am lucky to be alive, plus with still having the use of my upper body I know I am blessed.  My question concerns phantom pains.  I have them daily.  They are excrutiating, mostly in my groin and hip area.  I seem to get the reaction that the Dr.'s and, of course, my friends & family don't believe me.  I read up on the latest discoveries on what might help, but they all usually wind up in a dead end.  I have a biology/chemistry degree, so I feel I understand the chemical craziness that occurs.  These pains have been the cause of some losses in friendships and the cause of non-believers.  They mostly think I am faking just to get out of doing something.  I feel as if I have no one to talk to anymore.  Do you have any suggestions?

Answer
Hi Todd,
Thanks so much for your question.

I understand completely what you're going through because I, too, have phantom pains. In fact, I also have severe phantom pain in my groin. It's feels like a burning sensation and it gets so bad that it is nearly impossible to do anything. But this doesn't just stay in the groin. For me, the burning sensation moves down my inner thighs and knees and there seems to be an excruciating pain coming from deep inside the bone.

What people fail to realize, is that phantom pain can be as bad and sometimes worse than real, normal sensation pain. When someone has a normal sensation pain, that person can get some relief by taking medication for that type of pain but there is no medications for phantom pain sufferers.

Also, phantom pains are not exclusive to people with spinal cord injuries. People who have had an amputation, be it a leg, arm, finger, etc., experience phantom pains.

Sometimes spinal cord injuries and amputees will experience phantom pains in the form of an itching feeling. I've had people tell me it's like they have a severe rash and want to scratch it and they can't. Sometimes, that type of phantom pain is worse than the pain or burning sensation most patients experience.

I find it very insensitive that these people don't believe you or think you're faking. I'm especially appalled and disappointed at the doctors. They, of all people, should be more understanding and recognize that phantom pains are very common among people who have lost sensation due to an amputation, spinal cord injury or by some other means.

I would ask the unbelievers to be a little more understanding and compassionate.

I hope this helps and if you have any more questions, please feel free to ask me anytime.

Thanks again,
John McKinzie