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Saturday, December 31, 2011

One Size Does Not Fit All

While on the phone with the pharmacy representative in charge of filling my prescription for Humira, she asked me one of the standard questions they always ask.  "On a scale of 0 to 10, 0 being none at all and 10 being the worst, how would you rate your pain?".  I freaking hate this question.  I never know how to answer.  I hurt all the time.  So zero is not an option.  Five seems like I am just not happy and anything higher, sounds like I am complaining or a hypochondriac.  I usually say 6 and hope it's just a formality because I am not sure what they or we are supposed to base it on. My pain scale would be radically different.  Questions, not numbers.

What is the base for your pain?
  As a general rule, there is a burning that is present or an ache, somewhere, almost always. That is what "1" would be.  The base, if you will.

What is your best time?
I would need someone with computer animation talent and a stopwatch to help with the next.  How slow am I moving or getting in and out of a chair?

Do you need a GPS with Traffic Alert to navigate your own home?
Can I maneuver between a child and a boot on the floor with ease (nope)?  Can you pass me by in the hallway without setting me off balance because I am so stiff with pain (again, nope)?

How are you carrying on conversations?
I would want to be asked how often I am silent.  That is a HUGE indicator.  Sometimes, the pain is so bad, I can no longer distract myself from it.  I can sit in a room full of people I know very well and have nothing to say at all.  That happened this Christmas.  I sat at the table and the pain coursing through my body was so intense, it was all I could do not to put my head on the table, right there, and cry.  I felt like an awful hostess. I thought for sure that they could see that I wasn't listening to them at all. 

Are you a glutton for punishment?
Yes.  I would rather stand (OK, lean) at the kitchen sink doing dishes and then move on to another task nobody in their right mind would do with the amount of pain I am feeling than sit and "relax".  Because, contrary to what you may think, for me, sitting in pain is worse than moving in it.  Notice I said, in it and not through it.  Through it would indicate that the pain passes.  It has not.  I need to be distracted.  My feet are bad.  Real bad.  But the counter pressure from standing on them is better than the stabbing, throbbing, indescribable pain when I finally sit.

Where are your emotions?
All over the freaking place.  I don't know what to say.  To live with this type of pain every moment, every day wears on you.  It is exhausting.  In. Every. Sense. Of. The. Word.  To try and maintain a "normal" lifestyle is...exhausting.  To pretend that the little things don't get to you; especially the pieces of yourself you feel are being chipped away...every day.

Can you complete a sentence...with all the words?
Nope.  Too much pain on the brain.  Processing is a problem. 

How is your tolerance for noise?
This always depends on the kind of day I have had.  If there has been opportunity to rest (ha-ha-ha-ha), I can take it.  If not and it has been a rough day, fogettaboutit!  Sometimes, I startle easily with the most common noises in a house with 3 children and 2 dogs.  The startle makes me jump, the jump makes me hurt, the hurt makes me cranky. 

In all honesty, unless you have a doctor who is willing to really listen and get to know you, there is no perfect pain scale.  Everyone is different and carries a different pain tolerance and response.  I feel that finding that balance between our trust for our doctors and the honesty with them as well as ourselves is key.  I want to tell my doctor how I am really feeling.  But I have to trust that they know I am not exaggerating.  The midwife that delivered my children knew this. She knew enough to get in my face and tell me I wasn't earning any medals by putting myself through more than was necessary.  This was during labor, a gall bladder attack AND a fourth degree tear!  All happening at the same time!  She was good awesome.  Why can't she be my doc for everything?

With everything that I have been through in the past couple of years, I sometimes think that maybe I am just a wimp.  Maybe I have a little pain and I just am handling it poorly.  And then, just as that thought crosses my mind, my body screams it's painful reminders.  No.  This isn't little, this is big...and real.  Real Bad Pain.  There is no scale for this.  There is no "One Size Fits All"

***This post is part of a blog carnival.  Please check out this link for more stories, thoughts and ideas about Pain Scales. .

Kelly at Rheumatoid Arthritis Warrior has done a wonderful job of pulling these blogs together for a wonderful and informative presentation.  We all appreciate her dedication.  Please stop by!


  1. You said it so well! Now can we just get these doctors to address the dang pain of it all! Why? I have asked myself this question for going on over 13 years now, why can't the medical community help with the pain? So often the tnfs don't make a dent in the pain for us, yet supposedly dmrads are the answer. But they are not. And often anti-inflammatories are not either. Please have a serious talk with your doctor about your pain level. This IS NOT acceptable and needs to be addressed by your ra doc. And don't take no for an answer! If you need narcotic pain medication, then try it. You won't become an addict like so many profess. You need to have some pain free days. This will not only heal your mind and body but your soul as well. I wrote a post about all of this. Look for the name...Let The Games Begin on my blog. But please don't accept this as is not and should not be. (((HUGS)))

  2. Deb, I have so much to learn and I greatly respect your 13 year battle. The good news is that I have changed doctors. While I don't feel that my previous doc did anything wrong, I don't think he was hearing me. For someone who has great difficulty in admitting defeat (in pain), this was a poor fit. New doctor is offering new treatment and a plan if it doesn't work. That is very much what I needed. A plan! I have given in to the narcotics (at night). Better sleep leads to better days. I will certainly check out your blog. Thank you, once again...and gentle HUGS to you!

  3. Great post, Rachel. I'm one of those who, as my pain level inches (actually, "foots" is more realistic) it's way up from 5, needs more noise in my life - music, TV, radio. Something to distract me from the d--med pain. I find watching TV - something mindless - is helpful because I don't have to use the old thinking processes - If I'm in 6+ pain, they probably are fried, anyway. But I really understand your ways of coping, even if mine are different. We all have different ways to deal with pain. And to measure pain. But I love your ways to measure pain! I'll have to make a list of questions for me!