Sunday, February 26, 2012


As I think about how to begin this page—whether I simply talk about myself, or give advice, or research work having to do with it—I find that I keep running across certain bits of information I have found to be more important than the others. 

The number one piece of advice that I can give you is actually twofold: BE YOUR OWN BEST ADVOCATE and KEEP RECORDS.

Why?  I can’t tell you the number of times I hurt like crazy all week, and then go into the doctor’s office and my pain level is a three.  I always try to be honest, for my own reasons—I know that once I make it a practice to lie or stretch the truth it becomes a snowball; the next time I go in I bend it a little more because I need to express that I’m hurting more this time, and then the next time, and then more the next time….there are only nine numbers on the chart, and even if I’m using plusses and minuses it’s not too long before I’ve run out of any sensible form of evaluation.

And believe me, you need to be honest if only to yourself.  You need to keep track.  You need to know when you’re hurting and if there’s any pattern: morning more than night, winter more than summer, weekends or Sunday or before a storm, or after you eat…whatever.  But be honest.

Here’s a small list of what to do:

1.  BUY A BOOK: It’s like purchasing a membership that makes you go to the gym.  If you buy a book, you’ll write in it. 

2.  USE A SCALE: Here’s one I like.  It’s from a group whose acronym is TIPNA: The International Pudendal Neuropathy Association, and it’s found on this page:  Apparently it's written by a man named Jack Harich, and it was first published in 2002.  I'm very thankful to him for it, and I hope I've credited him well enough to avoid a copyright dispute.
It’s a 10-point system, and it breaks down the pains into three areas…Mild, Moderate, and Severe.  It uses lots of describers, like “You find it hard to concentrate.”  One of the best things I like about this scale is how it gives you analogies: bee stings, migraines, toothaches, etc.  It’s easy to understand and be consistent this way.
PRINT IT OUT!  It’s a terrific way to keep track of your pain.

3.  KEEP THE NOTES FOR YOU ALONE, AND BE HONEST:  Don’t exaggerate…only you will be reading this.  Note when you feel this, and if there are any conditions you think are noteworthy (and you’ll probably get a better sense of what’s “noteworthy” as you go along).  I refer to it when I visit the doctor, but I don’t hand my diary to him…it’s for me. 

Don’t  COMPARE with others…your 3 could be their 6.  I find that most people exaggerate pain just like they exaggerate in other areas.  No one suffers like they do.

I repeat: BE HONEST!  I have found that an extended 3 can outdo a short 5, and has!  Don’t exaggerate if you want this scale to work; you and I know you hurt, but it varies.  This scale says, next to 10: “Most people have never experienced this level of pain.”

4.  MAKE IT A HABIT: Keep taking the notes –BRIEF notes—at a certain time every day, when it’s easy: during the Today show, or Letterman, or at lunch…whatever.

5.  WHERE DOES IT HURT?  Write down you feel a 3, and where you feel a 6.  What kind of pain is it?  (Sharp, fuzzy, aching, stinging, hot, electric, etc.)  Develop a shorthand.   Learn what your  doctor asks, and see if you can supply that kind of info.  I find your doctor can’t do anything if you don’t give him precise info.

My relationship with pain may not be at all like yours; I am sure everyone’s varies.  But keeping a good record of your pain will help you understand your own daily trauma and make it easier to report when you get to the office.

I hope this helps.