And how would you rate your pain today?

Each time I go a doctor, even if it is unrelated to the conditions that are causing me pain, I’m asked “do you have any pain today?”

I often chuckle at this question.  They’re well-meaning, I know, and I’m not laughing at the nurse.  My chuckle is more of a shaking-my-head-in-resignation reflex.  Because I’m always in pain.  It’s similar to the “does a bear…” question.

I answer “yes” and then am asked “How long have you had it?”

This question again makes me laugh to myself again, this time at what has become to me a massive amount of time with no comfort, as I answer “um, coming up on three years.”

The third question in this series is “On a scale of 1 to 10 with 10 being the worst pain you could ever imagine, what would you rate your pain?”

This is the question that always gets me.  “The worst pain you could ever imagine.”  As soon as they say that phrase I immediately down-grade the number I probably would have said had that phrase not been included in the question.  It instantly makes me think “surely this is no where near the worst pain I could imagine.”  There’s a couple reason for this pain-scale-downgrade process that I always seem to experience.

First of all, I am fully aware that there are always people in the world worse off than I am.  I don’t want to seem ungrateful, I don’t want to seem like I’m saying I’m as bad as the people dealing with things far worse than myself.  Even if that thought never crosses the nurse’s mind, I don’t want to seem to MYSELF (in my own mind) that I’m equating my issues with those that are struggling with more.  Intellectually I know that this is a ridiculous reason to downgrade my pain scale rating, but it’s the reality of what’s happening within me.

Second, some days are better than others.  The pain is never gone, but some days are better than others.  If I rate my current pain as higher on the scale and then days, weeks, or months later it gets worse that I imagined it would…I’ll have no place to go on the scale.  If I “top out” or even “overrate” then how will I communicate when it’s getting even worse?  Again, intellectually I know this is a strange way to think about it, but it’s my reality.

So I go through the process of thinking to myself “what’s a reasonable number for my issues?”  What’s a reasonable number for pain in my hands, wrists and feet compared to someone that was crushed in a car accident or burned over most of their body (apparently, those are the types of pain that would be the worst I could imagine)?  Surely those must be “10” type pains.  And if that’s what a 10 is then mine must be only a 3!  After all, there’s a big difference between my situation and those!

But if I rate it too low will the doctors take it seriously?  Will they realize that I am truly in constant pain and work to understand or relieve it?

So then I do the strange thing of giving a range: “3 to 4, I guess.”  Really?  I can’t just pick a number?  I’m a mess!

Then, as if this simple process of rating my pain on a scale of 1-10 could get any more unnecessarily complicated, sometimes the office will have a poster that not only contains the 1-10 scale with the smiley faces but they also have descriptors about how the pain is affecting your day.

pain

On these posters, the phrase “can be ignored” appears under the “1-3” range.  Well, mine definitely cannot be ignored.

So then I look at the next range “interferes with tasks” is shown under the “3-5” range.  OK, well my pain definitely interferes with tasks (not to mention my mood). OK, so maybe that’s a better place for me – but I’d better check the next level up to see if I fit in that one.

“Interferes with concentration” is below the “5-7” range.  Oh.  Well, yeah, my pain does that.  Maybe I should rate it higher.  I’d better check the next level…

“Interferes with basic needs” and “bed rest required” are the top to categories.  OK, I’m not there yet.

So it seems that most of the time I’m in the “5-7” range.  But I bet if I went through my medical records of all my various appointments, “3-4” is probably my most common response.  So why do I have such a hard time expressing a number in the “5-7” range to my doctors?  Does everyone have this issue?

My 8 year-old daughter certainly doesn’t seem to have these issues – she has no problem pointing to the dark red frowny face under the number 6 or even the orange deeper-frowny-face under the 8 when she has a sore throat or pink eye?  Why is she so able to express how she really feels while I am not?  Is it my age/experience and realization that there are much worse things in the world going on than what I’m dealing with?  Or is it something about me, my personality or the way I think?

Or is it because her pain and discomfort is acute – it wasn’t there the day (or couple of days) before and it won’t be there (hopefully) within a day or two after.  She knows what she feels like when she’s feeling good and she knows how she feels right at that moment isn’t good.  She can easily compare the “before” with the “after.”  She knows how she’s feeling now isn’t normal.

I’ve been in daily pain since January 2011.  Unfortunately this has become my “new normal.”  I truly don’t remember what it is like to not have pain.  I have some vague understanding of “it’s better than this,” but beyond that I really don’t know.  Has the chronic nature of my discomfort somehow shifted my ability to communicate to others the severity of my pain?

7 thoughts on “And how would you rate your pain today?

  1. Oh my gosh!!!! It is as if I wrote this. I have this problem everytime. I don’t
    know what to say. The worst pain ever?!?! Really?!?! I feel exactly the same
    as you. I am so torn when filling out the form.

    You wrote it beautifully!!!

    Bobbie

    1. Thank you! I cannot express how nice it is to know that I’m not the only one that has issues with something that seems so straight forward and simple! 🙂

  2. Wow! I’m so glad I read this! My doctor said to me once, “Remember giving birth…that’s more on the scale of 8-10.” Ok, well, I often feel as if I had an easier time dealing with giving birth to my son, because I’m so used to writhing in pain with my migraines. My dad also had migraines, and he often said it would be better to shoot himself in the head than have a migraine. Well, that sounds horrific, I know…but, in the middle of a migraine, that is often how I feel too. That scale is so horrible and I believe that doctors rely on it way to much to decide if they truly listen to what the patient is going through with the necessary concern.

    Thank you for your thoughtfully written post.

  3. Thank you so much for writing so well on these topics that are near and dear to my heart. It’s uncanny; I stumbled upon your blog today, and see that most of my posts cover the same topics yours cover. Just yesterday, I wrote about how challenging it is to use the pain scale and convey something the doctors will get . I offered what I find to be a useful guide to reporting pain. I’d love to hear your thoughts about whether that scale speaks to some of your difficulties. All the best, T.P.P.

  4. Beautifully put! I am new to SS – though I have been enduring it since 2002/3 and have even been treated by three of the rheumatologists at Oswestry who seem not to know it exists! I am still not ‘official’ -have just changed my GP and hoping for a referral to the QE (where I was born as my mother was a nurse there!). I am on a steep learning curve here but the most useful referral I have had was to a ‘Pain Management Course’ where sixteen of us – both sexes, from 20s to mid 60s and all undiagnosed but multisymptomatic – bonded and found it so good to be able to talk to others in this lonely situation. We still keep in touch via e-mail and the occasional meeting.
    I have lung involvement and am confined to bed unable to exert but no doctor has been interested in exploring that so I may pop my clogs and they will no doubt be glad to see the back of me…
    BW

  5. I have always gone through the exact same thought processes as you and others have done, until a couple of months ago, when an ER Doctor asked me the question. I guess I looked more puzzled than usual, thinking of the usual “faces” chart, and then Kamie’s chart from the Sjogren’s World website, which makes more sense, and then I got hung in the middle as to what would mean more for him. He then asked “What’s your reference point. I knew immediately what it was: I once was in a library and had to climb on a stool to reach a book on a high shelf. I slipped and feel straight down on my right leg, and shattered my tibia and fibula. That was the Worst Pain Imaginable. The pain from Sjögren’s (Primary Sjögren’s formal diagnosis) is *not* that bad, not a 10. That day, I think I rated it as 8.5 — and he got it. On the verge of crying out from the pain but not quite there yet. Certainly if I were distracted I might not notice it for a little bit, but it would return . . . that kind of pain. Then we moved down the scale a little bit, from the worst pain ever with Sjögren”s (that 8.5) down to 7.5 or 8.0 for that specific day.
    So I would suggest: If a doctor doesnt tell you more about what the scale means “tears come to your eyes, you have to cry out loud, you just have to tell somebody it hurts (Im mixing up answers here)’, then tell the doctor. ER doctors, in particular, can be trusted to know what the pain crash landing on one’s tibia/fibula is like in physiological terms. Believe me, that day I made an enormous amount of noise. Fortunately I was around the corner from the ER and the ambulance came very fast. But he knew.

    So now I know how to tell a doctor of any stripe who remembers an ER (ED) rotation what a level ten is for me. Tell the doctor who ask you this very stupid question, “my worst pain ever was when I tripped over a tricicle on a sidewalk and wound up screeching for my Mommy, and couldn’t stop. That’s okay too, Level 10 means you make noise, you are inconsolable, you can’t pay attention to anything else, and you want someone to hug you and make it better, either with drugs, as in the tib/fib fracture I had, or as in tumble from a tricycle. For you that is your reference for the “worst pain ever.” As long as the doctor has that description to go from, s/he has a very good idea of what you mean,
    Best,
    SoyCoffee

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