Picking a Number on the Pain Scale

I have been thinking a lot about measuring pain.  Yesterday I mentioned that I think people with chronic pain have a different scale than “normal” people.  Our baseline is set differently.  For example, to me a good day is when my pain is a 2-3.  I can not remember a day in the last year (maybe longer, when I think about it) when my pain was lower than a 2.  So for me 2=0.   I have gotten pretty good at analyzing my body, trying to figure out what hurts and how much, trying to figure out which disease is acting up.  You have to do that when you have multiple issues, so you know what’s working and what’s not.  So each day, I am choosing between my RA, fibro, and my DDD.  Almost everyday there is some issue with my back (DDD) and typically my RA and my fibro trade-off (which I feel is pretty considerate of them).

Today my pain was around a 6. Some days I have localized pain that is high and the rest of me is at the 2 baseline.  Frequently, it will be my back or my hands that hit a 7-8 while the rest of me is pretty ok.  Today I was a solid 6 from head to toe.  That kind of pain is rough for me because everything hurts.  I can’t use my hands, it hurts to walk, but it hurts to sit.  Etc, etc.  When I told my acupuncturist that I was 5-6 today and that it was pretty bad she asked, “That’s bad?” I hesitated a moment and I said, “yes when you have already taken a lot of medication and you are at 6.”  What I should have said is that when I say six, I mean that it is hard to function.  I have taken my normal meds plus Tramadol; I have stretched and tried to walk it out; I have done everything I can and I am still miserable.   And maybe it was the fact that so many different things hurt today that made the 6 seem so awful.  Who knows.  Either way she stepped up my treatment and I left feeling better.  Hopefully it lasts.

While I was sitting with all my needles, my acupuncturist talked to a new patient nearby (I go to a community acupuncture clinic so there are several people being treated in the same room).  The woman said her pain was a 2-3, and that it was really bad.  Linda asked the same question- “That’s bad?” and the woman explained that for her, having pain at a 2 meant that she had difficulty walking which was a big adjustment because she’s a runner.

All of this got me to thinking about pain levels, about how we measure pain, about how we compare ourselves to others based on where we are on that scale.  I started thinking about doctors, and how difficult it must be to interpret people’s answers to the pain scale.  If I tell my doctor I am at a 2, I will get happy remarks.  But there may be others who say they are at a 2 and the doctor needs to be concerned.  But how do they know who is who?

It all seems so crazy subjective to me.  It’s no wonder that getting diagnosed is difficult when you have chronic pain.  It’s almost a guessing game!  Maybe doctors should ask patients to create their own pain scales with their own personal descriptions to make it easier to understand each patient.  Mine would like something like this

0-1: obviously I am dead because this doesn’t happen

2-3: a pretty good. Some aches and pains, but nothing major

4-5:  I hurt.   I need pain meds.  I am limiting my activities considerably.

6-7:   I hurt a lot.  I need a steady stream of pain meds, heat, stretching, and I am probably still pretty miserable despite all of that

8-9: Extreme pain that is severely limiting activity; pain unresponsive to medication, heat, etc.

10: I have never ever said I was at a 10 despite years of pain and having 3 babies so if I ever say this, someone should get me to the ER quick because I am clearly dying.

What about you?  What’s your pain scale?

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  1. I think the pain scale is confusing. I like the smiley to sad face scale better.

  2. Whatever pain scale feels accurate to you is the best one, my doctor said. I agree.

    I was diagnosed with multiple chronic illnesses 15 years ago–and for a long while, the pain scale (1-10) helped me make sense of what my body was saying, and helped me communicate my level of pain to my family.

    Now, my pain scale is 1-4 ouches. 1 ouch means: “I’m not aware of the pain–it doesn’t interfere with my activities;” 2 ouches) “the pain is tolerable”

    most of the time, these days, I”m living at 1 or 2.

    3 ouches means “it’s gettin’ pretty bad;”
    4 ouches means “This better get better soon or I’m gonna scream.”

    (thankfully, I don’t freak out anymore when I get ito 4 ouches, because I know from experience that “this, too, shall pass,” and it does, within an hour.)

    It’s hard to live with chronic illness. I sincerely wish you all the best in managing it with grace.

    • akajanie

       /  May 8, 2012

      I really like the idea of only four numbers- much simpler! Great idea!

      • Another, more positive way to look at it: 😦 (frowny face) = worst pain; 😐 (straight face) = it’s getting bad; 🙂 (one smile) = It’s not bothering me much; 🙂 🙂 (two smiles) = I’m not noticing the pain.
        🙂 🙂

  3. Thinking about it I never say 9 or 10. Maybe I don’t want to admit it is that bad.

    I live mostly on a 4 and then on flare-ups I should admit it is at least a 9, because I am getting nothing done but suffering. But I down-play my pain and only rate those days as a 8. Denial makes my scale 0-8.

    I’ve been trying a paleo diet for about 11 weeks. After about 8 weeks on this diet I had two weeks at a 1-2 and then 0 for ten days!

    It felt so good to be free of pain, I could think of nothing else. I really thought about how good I felt as much as I had the pain.

    Then my daughter (25 yrs old) told me she thought I wasn’t “that sick” and I should be working. The stress of her judgement put me back into a full blown flare-up!

    Back to square one.
    I’m having an 8 day today.

    I’m dealing with my diet issues. Now I need to learn to deal with stress.

    I can’t believe I am supposed to live the next 20+ years like this!
    There has to be a way out.

    • akajanie

       /  May 8, 2012

      I think, from everything I have heard and read, we won’t be living at an 8 pain level for 20 years. It just takes a lot of time and patience to find the right balance of stuff that will keep us at the 2-3 range.
      You are so right about how much of an impact stress can have! I hope your daughter comes around.
      I am absolutely amazed at your results of the paleo diet. And also amazed you were able to do it! Modifying my food has been hard for me, and I have only done small modifications. I am not sure I can much drastic changes like that, so good for you! I hope you are able to get back to those good pain levels soon!

      • I told myself I would do it for a year and if it didn’t help, at least I tried and I can try something else. Not only did I get a short reprieve, I lost 20# without trying. You loose the cravings for carbs after about 10 days, sometimes less.

  4. Karen

     /  July 26, 2012

    Great article! I was just talking about part of what you wrote… The pain in my body was at a 2 (completely bearable), but my head was at a 6 (I need meds & an icepack… STAT!) I think my pain scale lines up with yours. I don’t think I’ve ever admitted to more than an 8 – anything higher, I will take the pain pills that make me sleepy & try to sleep it away.

  1. Fibromyalgia-Why We Hide The Pain Everyday | fibromale

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