Measuring Beyond the Pain Scale

Measuring Beyond the Pain Scale

By Frank McGillin.

As part of Pain Awareness Month, NeuroMetrix Chief Commercial Officer Frank McGillin has written a series on chronic pain. We are republishing his comments on the Pain Scale. The other contributions can be found here.

NeuroMetrix Chief Commercial Officer, Frank McGillin

At one point or another, you may have been asked to rate your level of pain so others can better understand the impact of your condition. A “five or six” might be teetering on the need for more medication, but tolerable, and an “eight or nine” could be in the danger zone of unbearable- but those numbers may mean something very different over time as your chronic pain condition changes.

While using this scale is certainly important when conveying levels of pain to your doctor, it is just one piece of the puzzle when it comes to determining how your pain changes over time and with the use of different treatment options. Pain intensity and relief cannot be measured in one dimension, on a zero to ten scale. Pain is personal and whether relief comes in the form of a lower number on the “pain scale” or reducing the number of times someone wakes throughout the course of the night, the measurement of success varies.

Our recent survey, fielded by BackerNation, highlights how those who report living with chronic back pain measure pain levels and relief. The results revealed that those living with chronic pain ultimately weigh factors related to their quality of life more heavily than pain reduction.

  • More than half of respondents (58 percent) said they believe a treatment is most successful if it enables them to increase physical activity or improves quality of their sleep, weighing quality of life more heavily than just pain reduction alone.
  • More than a third (37 percent) noted that general mood improvements are also a critical indicator of treatment success, versus the 26 percent who believe a success treatment will cure their pain forever.

Because chronic pain is such a complex biopsychosocial condition — involving the interaction of biological, psychological and social factors — the way a treatment can impact ones quality of life is just as, if not more important to how it impacts the overall level of pain.

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Authored by: Frank McGillin

There are 7 comments for this article
  1. CathyM at 4:30 pm

    Thanks so much for this!! I’ve been ranting against the pain scale since it was implemented – it’s clear to me that it’s simple a cheap (and dishonest) way for bean counters to measure something that’s really too complex to be put on a graph. Functionality would be a much better scale, if we had to have one. Whenever they try it with me (unless I fear the doc will punish me in some passive/aggressive way) I’ll put multiple numbers on the human outline – because my knee might be a 7, but my back is a 3 that day, and my neck a 6, etc. And I’ve said the same thing, pointing out that my back is a 4 when I’m sitting, but if I’m asked to stand, it’ll become a 7 fast. And I never was good at arithmetic so I can’t average. :-p It’s a ridiculous system, invented for bean counters and those who want to pretend they can understand pain in under a minute. I do try always to push back using functionality as my scale, because that’s what’s most important to me.

    Another issue is that a “3” pain that lasts for a solid week becomes as unbearable as a “7” that lasts an hour. There’s no acknowledgement for that. And I believe there’s “pain” and “pain tolerance”… there are some days that – due to other stressors like fatigue, overdue bills, someone sick, etc. – I can’t keep going with pain that on a gentler day I could manage. So I try hard to stay in balance and not overload myself – leave plenty of “down time” before and after activities, time most people don’t even realize I need. Until the pain “experts” really talk to those of us in chronic pain, I don’t think they’ll have a clue about how to determine severity and what to do about it. JMO.

  2. Ibin at 12:37 pm

    Linda, mental health doctor? Why don’ we patients just form an “opioid anonymous” group, seek some dot/gov funding and sit around in a group talking about it. Maybe with the help of a psychiatrist, we can talk our pain away. I was sent once to a doctor that told me that pain “was all in my head”. I replied no, it was all in my lower back. That’s where it has been for decades due to incompetence from a high volume surgeon in the OR.

  3. Catherine Pridemore at 1:35 pm

    I had very good surgeon tell me once in 1998 that he disliked using the pain scale. He told me that from that moment on to just say ” my ten in not your ten but I will give you a number if I must”.

  4. HJ at 12:22 pm

    Yes! This! So much this!

    When my symptoms cause my activities to be limited, I re-encounter the grief process and I sometimes get “stuck” in the depression stage. I get frustrated, but since I don’t have the energy to maintain frustration or anger, it turns into depression.

    Doctors fault me for being depressed. They treat me differently. They restrict access to treatments that would help. I’ve learned to say, “I’m depressed because my symptoms are worse. Please treat my symptoms and my depression will improve!”

    I’ve gotten to know myself better through this illness. I HAVE to be more aware of triggers, of energy levels/fatigue, sleep, mood and pain and how all these things inter-react. I wish I could rate these things independently and see how they impact each other… then I could SHOW my doctor a score that would conceptualize my experience for them. Mostly, though, I want these for my personal insight… as a “warning system” that tells me that it’s time to focus on sleep, or that my pain is higher because, oh look, a few days ago, I rated my activity level as a 7.

    Internally, I do “survey myself” often. I assess my pain, my fatigue and how active I’ve been… and I use this assessment to pace myself better. Pacing is a real trick… let me tell you! Our culture is NOT inclined to value pacing. We go, go, go, go. I had no concept of HOW to pace myself! It’s a bit of an art form. I’ve learned that I can wash 10 dishes in the sink without increasing my symptoms. When I vacuum, I know that vacuuming under the bird cage is most demanding so I do that and then I rest. Sometimes I vaccuum the living room and hallway… and then rest. The bedroom can be done later or another day. I want to get into the habit of cleaning the bathroom one fixture at a time. When I go in there, it’s easy to clean the sink one day… and clean the toilet bowl another day. I still do hate the bathtub, but I can do that on a weekend before I shower. On Saturday, I can do the tub… on Sunday, the shower walls. Don’t get me wrong… I count myself VERY lucky to be able to do this much and without my pain meds, I would be unable to maintain this at all and would become depressed and not want to have any company which would make me further withdrawn and more depressed.

    We do lose the ability to do things we value doing. So, you’re totally right. It’s not about pain levels. Before I was ill, I couldn’t imagine having to clean just 10 dishes at a time or feeling tired after a shower. Now, it just is that way. All these limitations are not things we describe to our doctors, because… they just are. When there are limitations to the way we’ve managed to adapt so far, these frustrations snowball inside and grow and churn… and we go to the doctor’s office and speak in general terms: “My pain is so bad! Can’t you help me?!?”

    My life is simple. No spouse, no kids, a small home, I don’t drive. My illness hit me in my early 20’s when I might be making decisions like that. My illness has impacted me in such a way that I prefer to keep my life small… and simple. Yet, would I tell the doctor, “I’ve decided not to have kids because I don’t think I can add that to my life if I wanted to.”? No. Would I say, “I never want to live in a bigger home because with my health, it would be unmanageable?” No. It’s a lot of what we DON’T say and the decisions we just make, maybe that we grieve privately over, that the doctor has no idea of.

    I don’t want to be in a relationship right now because I would have more commitments, more complexity, more choices to make, more energy spent… I can’t disrupt my routine like that! I have a routine that kind of works. Am I lonely? Yeah, sometimes. I used to be very lonely. I still wonder what it will mean if I’m older, sicker and… alone. (I don’t even have brothers or sisters so where’s my safety net for if I fail to be able to care for myself?).

    I’m not despairing. It just is what it is.

    Some of these things that impact us run so much deeper than most folks imagine. I count myself as fortunate but I don’t know what the future brings and frankly, I’ve had to fight and claw to get the support and treatments that keep me afloat.

    Maybe the worst thing that can happen is that despite all my efforts, I lose access to treatments that let me have the abilities I have right now. There is a point when hopelessness becomes a valid and rational reaction. I have seen a therapist on and off to manage the complexities of dealing with difficult doctors, having a chronic illness in the workplace… Do you know what she said to me when I worried that I was abnormal for feeling depressed?

    She said, “You have chronic pain and chronic fatigue. Who WOULDN’T be depressed?”

    I can’t lose access to treatments that are keeping me afloat. I’m doing the best I can and I’ve sacrificed more than anyone in my life realizes.

  5. Bob Schubring at 10:25 am

    The subjective one-to-ten scale compares an acute pain, with other acute pain episodes the patient has experienced. If we ask someone who rates their pain a ‘six’, what their Level Ten pain was, we get some idea from what that patient is referring the Level Ten to.

    One patient’s Level Ten might have been from appendicitis.

    Another’s Level Ten might have been from a rib fracture.

    A third might have had Level Ten from a migraine attack.

    To emergency personnel, what’s important is if the patient says she has Level Ten pain in this incident, whatever is happening to her, is worse than other painful events she remembers from her past.

    That’s the context for how the one-to-ten scale came about. It’s primarily helpful in triage, when dealing with a conscious patient who reports with unknown illness or injury, because the doctor can use the self-reported information to work out the probability that any particular disease is causing the symptoms the patient reports. Palliative care can be attempted immediately, taking care not to endanger the patient, while tests are run and the diagnosis reached. (Not endangering the patient includes the choice of whether to treat with aspirin products…usually if heart attack is suspected, aspirin is given to help keep blood flowing…but if the pain could be fro, some condition like gall stones that would require surgery, aspirin must not be given, because thin blood is dangerous during surgery.)

    When reducing the harm caused by chronic pain, the subjective one-to-ten scale becomes inaccurate, because the patient has learned to stop moving and functioning because it minimizes the pain to sit still, and hurts worse to move. So it’s entirely reasonable to assess the chronic pain patient’s loss of functionality and to set treatment goals of restoring functionality.

    Opiophobes obsess about the habit-forming nature of pain-care medications, but ignore the habit-forming nature of suffering unrelieved pain, and that ignorance does grave damage to pain patients.. The human body isn’t made to sit idle. Having too much pain to move, is harmful. Relieving that pain and restoring function, is life-saving.

  6. M.Billeaudeaux at 8:21 am

    I wish there would be consistency with pain. Some days are very tolerable, while others are unbearable. Not knowing the cause of the increase of severity, how can we determine medication and dosage on a consistent basis? If we could determine the amount of medication based on how pain affects us each day, I think we would be better patients. But, with only a certain amount of medication supplied daily we cannot adjust our medications as a patient. This is a concern.
    Remember, write to your congressman/woman about the prescription crisis we are facing now as pain patients and pain physicians.

  7. Linda at 7:49 am

    Interesting. My doctor pays no attention whatsoever to either my pain scale number, or to whatever I tell her about my levels of pain. It matters not to her because there is nothing she can do about it.

    I’ve tried to have the conversation with her about what we’ve learned here, and she appeared to be annoyed, saying “well I’m glad you read! ”

    And that was that.

    I’m so sick of her constant harsh pushing for me to see mental health. I’ve been through so much mental health over the years per doctors request. I still work in that half hour appt after every appt I have with her, and it’s still all I ever hear.

    “It will help, it will this, it will that ‘. IT hasn’t done anything except make my pain a whole lot worse, because they have no idea how much further I have to push my body to the limits to make it through the end of THAT appointment. By that time I am on the verge of collapsing because I hurt so bad.
    And because I have to go through that extra push of that second appointment, it feels to me like that is when I am really doing the damage to my body from having to do what it has no business doing at that point.

    She just doesn’t understand that and, the health Center doesn’t allow the doctors to write certain preparations. There are lists on the backs of each door of the opiods they no longer prescribe.

    I can’t afford to go anywhere else. I’m on Medicare and this place furnishes my medicines for free.

    She sent me to the one pain specialist around, and it was a horrible experience. The man asked me what else if was going to find in me (other than my meds) as he laughed in a not-nice way. He acted like the king of all. I went speechless and then blurted out “what are you talking about “. My friend is the one who told me that he meant illegal drugs and then I felt like an idiot. I just didn’t catch on at the moment.

    Enough said. Pain scale is a big zip for this patient.

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