I Hate the Pain Scale

By Leanne Donaldson

2 min read

Oh, the dreaded pain scale. I’m sure you know the one I’m speaking of. It’s pretty much the same one at every doctor’s office. “On a scale of 1-10...blah, blah, blah.” Effective for short term pain, like after surgery or perhaps a broken arm. But for chronic pain, every single one I’ve had to fill out simply makes no sense at all to me. It just lacks so much.

Why I hate the pain scale

It doesn’t convey anything about my actual well-being or what I am capable of doing, despite my pain. It doesn’t tell the doctor that I can do one activity a day. It doesn’t say that I can do three things if I rest in between. It doesn’t allow for the fact that there are some days when I can only get out of bed to pee. How does all of that equate to a single number?

5.5 or 6: Such a hard choice

Even though I really like my doctor and think she is wonderful, I don’t think she even looks at what I write. Even though I spent like 10 minutes in the waiting room, wavering between 5.5 and 6. Like it actually matters which one I circle. Like it tells my doctor anything at all about the state of my pain. It doesn’t convey if my medicine is working or not. I think maybe one time I might just refuse to do it and see if anyone really notices. I’ll let you know how that goes.

There has to be a better way

I wish I could say that I had the PERFECT way to do it. But I don’t. I have ideas, thoughts, and suggestions. But even my best ones seem to be lacking so much. I think maybe we should do something like, on the average, how many “things” can you do in a day. So like, you could do one load of laundry. Or, you could make it through one day of work, with level three pain.

What can I do today?

Because really, I feel like that’s what it always comes down to. What can I do today? How long will it take me to do it? How hard is it to do? Can I do anything at all? Maybe we would be better off is we keep a chart in a planner or something similar. Then we could take that with us instead of dealing with the dreaded pain scale. I feel like I really need to sit down and develop something better. We fight our way through so many things, why can’t we do something better for this?

Help a girl out!

I’d love your help! If you could change the traditional “pain scale” to something else...something more productive and informative for your healthcare provider...what would you include? How would you set it up? What do you think is most important for your healthcare provider to know about how you are doing? I’m starting a movement, and I’d love for you to get involved! We can change the dreaded pain scale, one doctor’s office at a time.

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Sean Member
Preach! I hate the pain scale, too. It seems to me that it's too subjective to really tell doctors much of anything. Am I at a 4? A 6? How the hell should I know. And what a 4 is to me might be an 8 to someone else. Or a 2. I've actually done some thinking on this and it seems to me that the TYPE of pain is more critical to a diagnosis than the pain level itself. Is it dull? Is it sharp? Is it burning? is it constant? Does it come and go? Is it static? Does it move around? Does it improve or worsen depending on position? Does heat make it better? Etc. Sure, subjective intensity could be a part of it, but only a small part.
forpaws Member
I have PsA and several other autoimmune/non-autoimmune conditions all of which cause chronic, widespread pain. I had a pair of MIs several years ago, the second was excruciating. I can't even describe it. So, on a "scale of...10 being the worst pain ever..." I'll always be a 4-6. The current scale is utterly useless...but what really sucks is just being used to the pain because I'm treated like a doctor-hopping drug-seeker if I mention it. Revamp the pain scale? How about asking how I slept last night? How I terrified my cats because of the crying and screaming? How I managed to finally get to the bathroom at a 30 degree angle, limping and dragging my leg?
1. cherylfrag Member
 Sorry get gets so bad.
mich54 Member
I agree 100% with you. I hate that question about what would you say your pain level is? My pain/stiffness/soreness level is the same, all over, all the time. I never know how to answer that question.
john4ns Member
I give them tit for tat. When I get asked for a pain scale number, I hit them with a detailed listing of various activities, etc and the pain number associated thereby. That nurse better be sitting down because I show no mercy. Ask an indeterminate question and you are going to get the full answer. Someday they will wake up and ask a more defined question that will provide valid and useful information. BTW: it's fun!
boedica Member
Totally agree with you. O had a physio at one time that said I couldn't possibly be at 8 on the pain scale! Then said that this wasn't for benefits... Suggesting that I was lying to get benefits? I was working at the time and very upset. Pain can't be measured in that way and is subjective. It's all dependent on what I did yesterday or this morning. It will be lower at late morning and higher by three pm. It goes down in the evening when I'm only sitting to watch TV and sew. I think a simple way would be for them to ask if there painkillers are working, if not then when aren't they working? We're not stupid and need to be treated as capable of assessing our own needs. The doctor can decide the treatment based on what we tell them about when it's not bearable.
jvbs Member
I agree that the pain scale is a good idea, for acute pain, but for us chronic sufferers, it's meaningless. I like the idea of asking real questions, like how hard was it to get into your car, drive over here, and walk into the office? How about how hard is it to get dressed in the morning, to get in and out of the shower, to cook supper, to fulfill your duties at work, if you are still able to work. The pain I rated as an 8 two years ago is probably more like a 4 today, I've learned to deal with that level and found work arounds, and I've just become used to it, so what is an 8 today would have had me sobbing two years ago. One nurse told me that I should think of labor as an 8, if that's the case, than I run at about a 12 on a good day and a 16 to 20 on a bad one.
judithspsa Member
And how do I “rate” it when I have 1. constant pain almost all over that if it was just short term would be a 4 but when it’s gone on for days, it’s unbearable like Chinese water torture AND 2. Have random intense pain that hits like a hornet sting then aches for an hour & gradually fades? I’m guessing it’s a complicated algebraic equation. And the “how much does it affect this or that activity.... sometimes I hurt like hell but will do things knowing I’ll even hurt worse. I want to have SOME joy in life. Even if this demon tries to destroy me mentally & physically.
jenniferadams Member
If I could redo the Pain Scale, I would focus on a three dimensional score instead of the linear 1 to 10 scale that is currently offered. Is your pain so debilitating that you can't even get out of bed? That's a 10 by 10 by 10. Is your pain is a constant throbbing nagging presence, that's not debilitating enough to bother mentioning to other people, and you can still work through, but that completely exhausts you by the end of the day? Maybe that's a 4 by 5 by 10. If you stub your toe and will be over it in 30 seconds, maybe that's a 1 by 1 by 1. So the three dimensions would be severity of pain, duration, and effect on daily life.
jenniferadams Member
It's just so subjective. Since people have different levels of pain at which they can still function. And what might be excruciating to some, might be tolerable to others. Like just because I could walk in here today and function with my constant pain doesn't mean that another person who felt my level of pain would be even able to get out of bed!
jmaguirre15 Member
Read this article. I use the following or my own version of this pain scale. Try it out. <a href='https://www.healthcentral.com/article/created-my-own-pain-and-fatigue-scale-for-my-psoriatic-arthritis' target='_blank' rel='noopener noreferrer ugc'>https://www.healthcentral.com/article/created-my-own-pain-and-fatigue-scale-for-my-psoriatic-arthritis</a>
Great Nana Member
At my rheumy's office, the question they ask is what is your pain level right now? Well, when I am sitting and if it's early in my day, that's a real hard one to answer because at that moment it is usually minimal. But the moment I stand up on my tortured right foot and knee, stooped over from having been sitting just a few minutes, then the pain is quite intense. Maybe I am taking the word "now" too literally!
1. Jill.Brodie Community Admin
 Hello <inline-mention user-id="3291449" username="nanaused2ride"/> I am glad you are seeing a rheumatologist for your pain. I agree with you, it is important to tell your doctor of all of the struggles and pain you go through. What helps you with your psoriatic arthritis? Jill, Community Moderator
sandcat Member
As a former nurse, I totally agree about the pain scale. When you hurt all of the time like we do with PSA and fibromyalgia, the scale is very hard to do. I always think of the faces scale used for children and how I fit into that, then convert it to a number. That way, if the pain is coming and going, you still have either a half-smile, neutral face, frown or at the point of tears (rarely do we reach the actual smile!).
1. Leanne Donaldson Moderator & Contributor
 I hear you <inline-mention user-id="3309343" username="sandcat"/> ! I keep hoping that one of these days I can reach actual smile level too. 😀 That's a good idea...I think next time when I go to the doctor I'm just going to take one of the faces from the faces scale like they show on tv and just hold that up in front of my face. Boy, my doctor would really get a kick out of that! How have you been getting on these days? I hope you are keeping yourself safe out there. -Leanne, Author
Sleeptech Michele Member
I think they should give us the body drawing front and back and we write a number over each area for whatever timeframe they are looking for. For example right now, the last 24 hours, or over the last week. I am fairly new to PsA, in less than 2 years it has crippled me, changed bones, caused heart failure, Sick Sinus Syndrome which they feel will require a pacemaker, vestibular issue, drop foot, muscle weakness, all causing numerous falls. Enthesitis in many of the normal places Achilles, wrist, hands, hips, shoulders, spine, bottom of feet, but the worst is in the ribs causing painful breathing. I already had a ruptured L4-5 and radiculopathy of C5-6. 5 implanted teeth so far. Cognitive issues (some days I can’t spell at all, not even well enough for spellcheck to figure it out) testing was done (EVOX) and the pain has half my brain bright red from pain unable to function, and 2 areas are blue indicating possible dementia (I’m only 47) so I’ve begun NeuroFeedback. I’m on Humira and Methotrexate currently my Sed rate before the meds was 48. The fatigue is unbearable and I’m often bedridden. At the rate this is moving without a significant change, I don’t expect to see 50. I’m so sorry for all of you going through this insidious disease. 
1. Lori.Foster Community Admin
 My heart goes out to you, <inline-mention username="Sleeptech Michele" user-id="3300514"/>. That is an awful lot of pain and debilitation to deal with. Please know that we are here for you whenever you need support or a safe place to vent. Sending lots and lots and lots of gentle hugs your way. - Lori (Team Member)
Sleeptech Michele Member
Thank you, I appreciate that. Tonight is a Methotrexate night those aren’t pleasant for me, hopefully they get better. I live in Florida and the COVID cases are climbing at a crazy rate. I got the vaccine, but I don’t always hold titers so I’m scared. It all feels like too much sometimes.
mema51 Member
<inline-mention username="Leanne Donaldson" user-id="3312035"/> I've never understood the pain scale because everyone's pain TOLERANCE is different. How do I know if your 7 is the same as my 7 & if I don't know, how does a doctor or nurse know?? Well, I don't, you don't & neither do they. I have always had a very high tolerance to pain. My husband used to tell people 'she never complains about pain. If she's crying, screaming, complaining or all 3, she is in excruciating pain!' But, does my level of excruciation compare to yours & vice versa? How are we to know that? When I tell a medical professional that my level is at 7 how do they know that my 7 is your 10? The heck with the numbers, I say. As my husband would say 'you can't feel her pain, how can you put it on a scale?' UGH.
CommunityMemberd085ff Member
I totally agree about the pain scale, and all of their scales.. I have been sure to add, my notes on their forms; compared to when I have been immobile from my back in years..., my rashes/lesions compared to year...- I am currently at a level or up and down from 4-8, and we all know it is like that from day to day. I always am quick to say- "it depends" I just spent 2 hours driving here, my hands and back hurt, please don't apply pressure or squeeze, I might not be nice, currently I can hold an adult conversation, yesterday was full of foul language. I am fortunate enough to have finally found a great rheumy and she has a wonderful, understanding and comical personality. It helps her understand when I have photos to share. As I am newly diagnosed, after a few years and several docs, I am still trying to navigate this year learning how to manage what began as a flare in March... so, yes I feel whiney compared to everyone who has dealt with contant swelling, pain and limitations. 
1. Lori.Foster Community Admin
 Hi <inline-mention username="CommunityMemberd085ff" user-id="6642660"/>. I am so glad you found a rheumatologist who gets it, especially as some who is still relatively new to PsA. Have you found an effective medication yet or are you still in the trial-and-error stage? Wishing you the best. - Lori (Team Member)
CommunityMemberd085ff Member
Lori, Thank you, I am still in trial and error. The rheumy is great and after being blown off for 10+ years, she is heaven sent. This year has been the longest and most severe flare which is in reality, a good thing, it couldn't be dismissed.
BFF BigFatFather Member
They get upset as my pain is a 4, then I show them my pain scale. I am told the 4 has other people in the hospital and my scale is no good. They tell me to use the highest pain I have encountered as the 10. I ask if they have had a broken back, been shot, spinal meningitis into the base of the brain, constant migraines for weeks on end. They say no. I tell them that is what my scale is based on. I also tell them I do not want drugs! I want the problem fixed, or at least repaired so I am able to not dreading doing anything. Finally I found a university that is working with me, been in constant pain for more than a decade. My nerves are being tested, my X-ray and CTs are being examined by actual pain doctors and neurologists. Tomorrow I get to go back for another painful test. Fluoroscopic viewing, 25 needle driven through cartilage to the nerve block, then lidocaine. Finding which nerves are damage and sending errant signals. Then when all are done, we can deaden the ones that require it.
1. Lori.Foster Community Admin
 What a relief it must be to finally have doctors who are willing to investigate your pain and offer some real treatment, <inline-mention username="BFF BigFatFather" user-id="4840297"/>. I only wish you hadn't had to wait so long. I hope tomorrow's test is bearable and that it offers some useful results. Keep up posted if you don't mind. I'll be thinking of you. - Lori (Team Member)
CommunityMember807915 Member
I never know what to say because I have different pain levels in different parts of my body! So my back might be at 9 and my hands at 7 and my knees at 3 and my feet at 9!!!!
1. Lori.Foster Community Admin
 That can be awfully confusing, <inline-mention username="CommunityMember807915" user-id="6722160"/>. I think I would go with your highest overall. Gentle hugs. - Lori (Team Member)
CommunityMember2643 Member
For myself, I use the pain scale in conjunction with a tolerance scale. For example, my pain might be a 5 today, but my tolerance for it might only be a 2 which would mean I feel worse than I do on days when my pain is a 7 and my tolerance is an 8. I have also seen pain scales that go up to 20 that are specifically for people who have chronic pain because we judge our pain differently. Either one would be better than what is currently used for people like us.
1. Leanne Donaldson Moderator & Contributor
 <inline-mention username="CommunityMember2643" user-id="6146033"/> Thanks for sharing your thoughts. That's an interesting take on the pain scale and it does make a lot of sense. With the different "types" of pain and fatigue our tolerance is a great way to look at it. Not to mention other aspects like sleep and my mental health which can also impact how I'd rate my pain. Your Dr. Seuss cover gave me quite the chuckle today, despite its sad truth. Sending you gentle hugs today and a "low" pain week! Take care of yourself- Leanne, Author and Team Member
CommunityMember2643 Member
<img src="/content/images/2023/09/13/3cc4265d173a0869aa3177f1f4377642_medium.jpeg" alt="Meme" class="uploaded-image"/>
rosah Member
I agree about the pain scale. I wish I had a better answer but I don't. I will think on this. I kind of like your idea of a chart with things you can and can't do but would I keep it up? Maybe if it was all set up in a planner. Thanks for addressing this topic.
CommunityMember388 Member
I got the following pain scale revision from a Dr's office I use to go to. I give copies to every doctor I see, and some have started using them (I see way too many doctors!). I like the way it's relatable, works for someone with minor, take-an-advil type pain, and also works for someone in chronic pain for decades. Pain Scale, simplified 0 - Pain Free Mild Pain- nagging, annoying, but doesn't really interfere with daily living activities 1 - Pain is very mild, barely noticeable. Most of the time you don't think about it. 2 - Minor pain. Annoying and may have occasional stronger twinges 3 - Pain is noticeable and distracting, however, you can get used to it and adapt. Moderate pain - Interferes significantly with daily living activities 4 - Moderate pain. If you are deeply involved in an activity, it can be ignored for a period of time, but it is still distracting. 5 - Moderate strong pain. It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities. 6 - Moderately strong pain that interferes with normal daily activities. Difficulty concentrating. Severe pain - Disabling, unable to perform daily living activities 7 - Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships. Interferes with sleep. 8 - Intense pain. Physical activity is severely limited. Conversing requires great effort. 9 - Excruciating pain. Unable to converse. Crying out and/or moaning uncontrollably. 10 - Unspeakable pain. Bedridden and possibly delirious. Very few people will ever experience this level of pain. 
1. Mary Lynn Member
 <inline-mention username="CommunityMember388" user-id="4715821"/> , this is terrific! I will make a copy. Those of us with chronic pain are pro's at functioning through pain or trying to cover it up. My daughter saw me wince several times one day and said, "Mom, its OK to tell us that you hurt."
rkdiasjr Member
Thankfully, my Nurse Practitioner doesn’t ask me about pain scale. She asks about real world impact because she knows that I’m used to a certain amount of pain so the scale is worthless. She asks about how much I’ve been able to practice bass guitar, how mobile I am after sitting for a while, etc
1. Abigail Covert Moderator
 That's wonderful <inline-mention username="rkdiasjr" user-id="3308020"/>! I'm so glad that your nurse practitioner understands you and knows how to try and understand your pain level without a little scale!💗 I adore when doctors and such actually go out of their way to understand their patients and truly help them in the way that works best for them! If you don't mind me asking, how long have you been seeing your nurse practitioner? - Abigail, Team Member
Amy68 Member
I think for many of us who suffer from chronic pain we get so used to tuning it out and trying to ignore it so we can get through the day, that we "don't notice" sometimes how bad it is. When I was on prednisone a few months ago, I started noticing a couple days in that things hurt less, and by day four, I was feeling almost no pain. It was astounding to be nearly pain-free! But it also brought home how badly I was used to hurting and how adept I'd become at tuning it out. And when the prednisone wore off, it took weeks to get used to the pain again. Ugh. I try NOT to focus on the pain, and being asked to put a number to it means I have to acknowledge and feel it in order to classify it, then get back to tuning it out. But realistically, it doesn't even MATTER what my pain is right this minute, or when I'm sitting in the doctor's office. When it matters is when I have work that has to be done or other obligations. What matters is that it never goes away, only fluctuates in strength. Telling someone that my elbow is at a four when tomorrow it could be at a six is ineffective. Here's where it hurts (the body diagram idea is great!), here's a list of how the pain limits my ability to live a normal life. Now what can we do to make it better?
1. Vickie Wilkerson Moderator & Contributor
 <inline-mention username="Amy68" user-id="6765940"/> you are so right there. We could write a manual of things doctors need not say. I forgot that one so thanks for sharing. Vickie W., Team Member 
2. Vickie Wilkerson Moderator & Contributor
 <inline-mention username="Amy68" user-id="6765940"/> you are not whiny at all. Remember to give yourself grace. You have to take care of you the best you can. If it needs to wait then let it wait. It took me a lot of time to figure out that the more you push the more you hurt yourself. Vickie W., Team Member
Eric_the_Eric Member
Whoever came up with the idea of the pain scale should be taken out and beaten with a bag of wet turds.

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