Monday, January 9, 2012

What a Pain! Does The Pain Scale Hurt or Help Us as Patients?

You know it. You've seen it. Pregnant ladies know it all too well. "Spoonies," too. People who have surgery definitely know it.

Smiley Face. SomewhatofaSmileyFace. Uh-Oh. #%+^&!!!

Dealing with pain is a tricky, tricky subject. It's tricky for the patient (each of us), the doctors, nurses, and other medical personnel caring for us, and our primary caregivers at home. Plus, we cannot forget friends, family, church friends, hobby group pals, etc.

Ask anyone on the street, rate your pain from 1 to 10 and by his or her response to that simple question, you will know a lot. Since my foray into the medical establishment at age 18 when I had my first MRI, cancer scare and subsequent surgery, I didn't think much of the 8 x 10 folded-over piece of paper tacked to the wall with scotch tape, threatening to fall with every swivel of a fan or rush of an air conditioner vent. Next to 0-1 is a smiley face and I imagine tickets to The Gorge, an outside concert venue a few hours west of Lewiston, Idaho,
where I was living at the time. The venue is ironically in George, Wash. (a giggle in itself). Current & iconic bands, single acts frequent the stage, a stage that merely rests on the
rolling Columbia Gorge steppe like somewhat an anomaly. Even though I always enjoyed going and may go again someday, I always kind of thought it weird to have such a wild and cosmic force out in the middle out of nowhere with the decibles pulsing along the river's tributaries, getting louder and louder, never settling down, unsettling the natural balance. The empty beer
can on what used to be animal tracks. Songs play & people party & have a grand time, me included, in a one of the most beautiful settings a concert could take place. But that's
before pain took me away.(More on that in posts to come...)

Chronic pain patients know what never settling down means in terms of pain. It can be never-ending, around the clock or sporadic, sharp, bursts of pain in certain areas (zap!) (pow!)
(zap!) (ZAP!)! It can mean interruptions in sleep or not sleeping at all.  With what I have, Neurofibromatosis, tumors rest on nerve endings throughout the body sometimes causing no pain, mild pain, all the way to severe, debilitating pain. Unfortunately, I know the latter from experience.

Back to the handy pain chart,

*1-2 is mild pain;
*3-4 is moderate pain;
*5-6 is severe pain;
*7-8 is very severe pain; and
*9-10 worst pain you ever experienced


There's some challenges patients, medical staff, and caregivers face day-to-day with this
chart as patients describe pain. One person's severe pain may be another's ice cream cone with sprinkles. OK, that is a little extreme, but it is hard to help each other when there are so
many kinds of people and so many pain thresholds. Then you have to deal with personality
issues (we will see this later) and whether someone tells the truth or not. Some truly need
medicine while others are looking to scam the system. Luckily, doctors and nurses don't just
use the pain scale like some parents do with a "sick" kid before a school day begins. Smart
parents and smart doctors back it up with diagnotics. :)

The pain chart can be a handy tool but I even find it hard at times when constantly asked "how
do you rate your pain?" A "four" two-years ago might not be a four today. Unless I am at 5-6 and going up fast, the numbers aren't terribly important to me. But then I get to 8, pain surges, and getting help becomes central to my life and overall well-being because it affects my depression heavily if I spend too much time on the higher end of the scale. But you have to remember my condition,from the outside, is unnotticeable. Unless I speak up, "7!" or "I'mreally hurting," people forget or move on to other patients. So, as a starting point and
conversation starter, the pain scale can be a good thing. But doctors and caregivers have to know how patients use the system because like each case each patient reacts to pain

There are times I keep my pain under wraps, i.e. public places or with friends, and my face
doesn't mirror what's happening on the inside, i.e. upset, hurting, etc. But I am truly feeling that inside. Yet, other times, I am totally that face and then some on the outside,
i.e. 5 p.m. at MD Anderson after a full day of tests and appointments. Or even gals, my time of the month is more of a challenge pain-wise, too. All right, I guess you say I'm aiming to
be the new poster gal for the pain chart. How's that for a claim to fame? :) Can you relate to
any of this? Has the pain chart helped you talk to your doctor and get your point across or has it been more of a hinderance, a game of pick-a-number?

A home health professional visited the house two to three days a week from June to November of
last year due to a post-op wound that was not healing correctly. It's a very long, detailed story with gruesome photographs, cleaning liquids, gauze, a buzzing machine AKA apparatus (officially called wound vac) that I had to wear for numerous weeks to help heal the post-op
error. Yes, I said, error, Mr. Surgeon. Long story short: I should've never taken said machine to the afternoon matinee. (I thought it would behave!) It became the worst kind of BFF making all kind of noise and ended up being ushered out of the theatre during a SJP* movie, even. Grr... It wasn't her career best, but I do like to see juicy parts of the movie & I swear that little machine had a brain! It was driving me crazy that day. I don't like cliches but I have to say it was a pain in the rear! Funny thing is, the wound vac was stage-left of that, my rear. So, it really was a pain in the backside! And that pain: Def: 5+! As you can see, humor gets me through!

We should laugh as much as we can when we are feeling good. Even at doctor's offices I use
bits of humor to diffuse situations. And there are times, I will admit, I can get a bit too serious when I'm in pain. My mom will agree. Well, to me, it's serious business. That's when I
gotta focus -- pray and/or mediate, if I can. Focus on an image or two that makes me happy like a scene in nature or my two furry "kids," Bridger and Sierra. That can sometimes make the
numbers on that pain scale go down or help me stay sane until something changes. But sometimes it is much, much harder. I'm not gonna lie. Living with a genetic disorder like
Neurofibromatosis*, is sometimes living minute to minute. The pain is really up there and even with help from doctors, nurses, family, friends, the person who helps you out is YOU! You are
strong enough. I am STRONG enough! It's not easy, though. Right now. As I type this, I am at a
4 and it's rising (pain in my arm, rising up through my neck on the left side -- Burning, aching, deep down). And as I do a quick edit, I am recovering from a three-day "I'm Out of It" zone with achiness, dizziness, pain, the whole works. I was completely unable to do anything.

When it comes... Fighting pain is about getting at that part of you that is deep down and
accessing it. Reach it and know it is there, be able to get at it. There
are times when you can't get at it and that is not only lonely but you hurt more. Also, you have to be able to feel the pain, all of it, imagine you are grabbing it all up, pulling it
from your body, visualize this... Grab that pain and hold it there away FROM your body as a symbol. Yes, this may seem silly, maybe, but it can work. One more item here, if you have
dealt with a lot with pain as I have, close your eyes: make sure there is a place inside you, somewhere, that pain has not got. Breathe in and out and hold yourself in that spot. Go there
to that spot as much as
you can. It can be a sanctuary from the pain. De-pain. Non-pain. Go there & be. It's important. Don't let pain get all of you. It may physically. But not our soul & our spirit.
So, the home health guy came to the house one day during that mini-month marathon and we got to discussing the pain chart. Every day, he asked me how I felt on a 1-10 scale. In a previous job as an ER nurse, he told me, he had a young patient on a gurney to which he asked the very same question. If I remember correctly, the guy may have been in his late teens. I don't remember exactly, forgive me. After not responding, the nurse, my home health guy, said, "0 means no pain at all & 10 is the worst pain you've ever experienced in your life...." The
patient sat up a little straighter and with a sly grin said, "Man, I ain't had the worst pain
in my life yet, bro'." I smiled. That was good one. I had to admit. Smart remark, yes. A heck of one. Then, I thought a bit more seriously, "God, I hope I am past that." That terrible, terrible pain. Yet, that pain still comes... In shocks & lightning bursts as if my body is more machine than flesh. I just hope I have the resources within me and around me to get me through it.

At age 34, I have sufficiently felt my share of 10s and even 10+ in my day from a needle
biopsy that went astray (age 18) to nerve pain in my leg that I simply could not keep under control (age 33) It's a horrible feeling, no, it's beyond horrible, to be in such agony and
not know when it will stop. Even as a writer, I find it tough to explain how I feel when I am in those moments of sheer pain and dread hoping, wishing, praying for the pain to ease up, to
stop. I want to scream out loud but I don't want to scare the people around me. But I want to urge God, the weather vain (dang pressure in the air all the time!), someone, something to
work on my & behalf. PLEASE. I try and stay as still as possible until it passes in the most comfortable position. Loud noises, for some reason, usually agitate the situation. This simply
could be a personal thing and the television's penchant for unruly commercials! I don't usually want to talk to anyone until the pain is back in the 6-7at least, but it depends on
each situation. Some 6-7 are tolerable. But then some aren't. I don't become "me" until I'm back at 4-5. Let's just say. For the record. Of course, I am always aiming for the round
smiley face at the left end with the 1/zero! Sounds pretty bad for a life's ambition but after you've been through the PET scans, the delicious barium shakes (sarcasm); long, longer,
longest waiting in the waiting room until the night cleaning crew shows up; funky cafeteria food and your mom's odd attraction to it; and mere affection for all hospital gift shops big
and small--as long as they have books&magaines, that smiley face means everything to you. It's your goal. Like tickets to your favorite concert venue. You want the :). It nearly becomes
like a badge once you cleared the rough passageway. Your finally home! :)

Do you have a lasting memory (good/bad) related to a pain scale?

Do you find pain scales helpful as a chronic pain patient?

*Unless you count the unidentifiable item Mom retrieved from the cafe that was wrapped in

*Sarah Jessica Parker, the one and only!

*I thought I had NF1 for the longest from age 18-34 and this year, at age 34, I got a blood
test that confirmed I had another form of NF, the newest variation called Schwannomatosis. I'll be talking more about it on my blog in the future. Info can be found;

 ©The Healing Redhead


  1. You are one of the strongest people I SHE-ro! (I now have Mariah Carey's "Hero" stuck in my head) :)

  2. GREAT job starting this....we are in the process of getting a diagnosis for my son right now...and we are in Houston too.

  3. Keep me posted on how things go! I will be there for pre-op appt for day surgery Thursday to get my voice fixed. Have had raspy, horrible-sounding voice for months and months due to a tumor that was resting on my vocal chords. It did better for awhile once the tumor was resected but voice or no-voice eventually returned. I am hopeful from what docs tell me at MDA they can fix it and I can sound pretty much like me again. Fingers crossed. As for your son, I want to know how things are going (sincerely), please keep me in the loop. Thanks for stopping by my blog!

  4. @SooLee, Thank you friend for all your kind comments! I appreciate your support & membership in my fan club! :) I couldn't do w/o you!