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The Pain Scale Predicament

The Pain Scale Predicament

Ask any person who deals with pain how they feel about the 0-10 pain scale commonly used in doctor’s offices and hospitals, and you will likely get a very colorful answer. And it is also likely that each person you talk to will give a much different answer about how they themselves use the pain scale. Certainly, pain is subjective. And giving a number to your pain, particularly while IN pain and therefore have cloudy thinking, can feel impossible. Add to that the worry that you are being judged, especially in an ER or urgent care setting, and that based on your answer you may or may not get the relief you need. The pain scale is mired in confusion and indecision. It’s no wonder that the chronic pain community has made many of their own (both joking and useful) pain scales and hilarious memes based on this conundrum.

Compounding symptoms

On a recent drive to the clinic for my CGRP treatment, John and I had a discussion about how what might be a 4 at home in bed with meds available becomes an 8 when you are stuck in a car far from home without medication. Many factors can contribute to basic pain making it harder to deal with, and therefore higher on the pain scale. My friend Selena Marie Wilson, a poet, artist, and administrator for the Facebook support group “BrainWreck Rebels” is now in a constant state of migraine. She told me “I really don’t like the standard pain scale because it simplifies too much.

As a starting point it’s not bad, but too many doctors don’t go into any more depth, such as asking a patient to rank the pain plus the intensity of other symptoms to reach a more accurate idea… mentally, I use a 1-20 scale.” She went on to explain how much extenuating factors and additional symptoms contribute to her pain. “I do think my personal pain scale has changed since becoming daily chronic, because all the new symptoms taught me just how much things you normally wouldn’t think contribute to pain actually do.”

Subjective numbers

On the other hand, my spoonie friend Julie, who is struggling with migraines as well as a multitude of other kidney-related and auto-immune ailments including POTS, told me in no uncertain terms (expletives removed), “I hate the pain scale. It should be used only for people with a sore back or broken arm, not for people with chronic illness. I never EVER say 10 when I go into the ER… if I go with chest pain, migraine, ovarian pain, even if I am bawling, hunched over, it’s always a 7. I was told once in a hospital that if you say 10 and aren’t there with a broken bone they won’t take you seriously. Today in the ER? I couldn’t move my arm, I was dizzy, and my BP was sky-high but you know what? 7. If it’s lower they’ll ask why I’m there, higher they’ll tell me most people with that number are in tears or can’t talk. When I miscarried? 7. When I can’t see out of one eye and my BP is 180/130? 7. My 10 is their 20. My 7 is their 15. It’s an arbitrary number.”

Personalizing the pain scale

As for me, my personal pain scale is still 0-10. For me, 4 is a dividing line. At 4, I have to treat. I will often lie down at that point, usually temporarily. At 6 I try to medicate heavily and go all the way to sleep, maybe still only temporarily. At 7-8 I get into all day bed and rescue medication territory (for me, this means Sumatriptan injection and Phenergan suppository). 9, I am crying, and need assistance, usually john tapping on my head, and I can’t lie still but need to rock or constantly shift my head and neck to new positions. Vomiting can come at this time, or sometimes only after days of pain varying from 4 to 10. 10, for me, is not “the worst pain imaginable” in the whole world for any person, like those who are shot in the stomach or have a limb amputated without anesthesia or are giving birth to twins in the woods. It is the worst pain imaginable FOR ME.

“This is my 10”

The worst migraine (and pain, total, which includes childbirth and pancreatitis) was in May of 2014. I went into the ER screaming and insensible. This was my “cluster-style” migraine and I was put on oxygen. I had to pace, bang my head, rock back and forth. There was no being still. This is my 10. I will never say “10” again until I am at that point. I came very close last month, when I told the nurse, “I am approaching my 10” but even though I’d vomited repeatedly (which I only do at 8 to 10) and lost control of my bladder, I still didn’t quite get there.

When I go into the ER, I usually say 8. It has kind of become my fallback the way Julie’s is 7. Twice in the last 6 months I’ve had ER nurses say to me, “And your pain is at a 10?” I was surprised at that assumption, and wasn’t sure either time whether they just figured (cynically?) I would say 10, or whether my demeanor, blood pressure and heart rate made them think 10. Both times I said “Um no, actually… I’m at an 8.” Sometimes at the ER I’m as low as 6, but have been in fluctuating severe pain for as long as a week with no reprieve, so I still say 8, which I think goes along with Selena’s additional symptoms and circumstances.

It’s all relative

And, I think of those who have posted in support groups about being at a 10 but heading out to the store, or being at a 10 and still taking care of their kids. I think about people who have never handled much pain at all passing a kidney stone, and what their version of “8” is compared to mine. And I think about how much of a baby I can be about other pain I’ve had, like the pain in my hand recently from a twisted nerve, or the back pain from my NSAIDS-induced ulcer before it was diagnosed and treated. I have a high pain tolerance, I think, but maybe just regarding head pain; yet, I can lie still for hours and have very sensitive areas like my upper chest tattooed which caused my artist friend (who does the tattooing) to tell me that I am “one tough chick.”

Finally, I think that doctors and nurses know that the numerical pain scale is very subjective and problematic, but it’s the best method they have for determining the pain their patient is currently feeling. They know that someone’s 10 is someone else’s 5, and that some people will say 10 all the time while some people never will. They know that some people will try to be as honest as possible and some will say what they think doctors and nurses want to hear.

What are your thoughts on, and experiences with, the numerical pain scale? Feel free to let us know in the comments!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Leslie Coutsouridis
    1 week ago

    At the head pain inpatient program in Michigan, a 0 to 5 Pain Scale is used. Each number had a clear definition. I found it easy to use.

  • sobs
    1 week ago

    There is something called the DISABILITY SCALE…something like that. It should be used in place of the pain scale. It is not based on pain level, it is based on dysfunctional level, which clearly we need to describe what’s actually going on vs the pain scale. It isn’t always about the pain, rather the dysfunction. The nausea, brain fog etc

  • Leslie Coutsouridis
    1 week ago

    I think this is a good idea. The number should describe the amount of functioning that you can do at the time.

  • lbmcfalls
    2 weeks ago

    I am a 35+ year migraineur that always answers under 10. I explain that I reserve 10 for unconscious patients. I too am unsatisfied with the basic 1 to 10 pain scale (as a patient and as a nurse) but it is a quick starting point during an assessment.
    As an aside comment, if you are ever treated poorly by a physician it should be reported to the nursing supervisor and CEO of the facility. Migraine patients endure a neurological disorder. They should not have to put up with old stigmas too.

  • Peggy Artman moderator
    2 weeks ago

    Hi lbmcfalls,
    Welcome to our migraine community! Your frustration with pain scales is understandable. Pain is such a personal experience. I also never rate my pain higher than an 8. I track my migraine attacks with an app that explains what each number on the scale means. This has helped me and my health care providers. I agree that physicians that treat their patients poorly should be reported. That is why we work so hard to fight stigma. Please know you are welcome to come back and share your experience.
    ~ Peggy

  • Nessa
    2 weeks ago

    Fantastic, well-written, factual article. I want my husband to read it.

  • TBI and still going
    2 weeks ago

    I really don’t like the pain scale! If I have a 10 I’m in bed anything else I do what I can do to live my life! I think that’s pretty much what we all do because we do t have a choice! I know drs need a guideline but it is very subjective!

  • Peggy Artman moderator
    2 weeks ago

    Hi TBI and still going,
    Welcome to our migraine community! Thanks for sharing your experience. Pain scales can be difficult because everyone feels pain differently. It is subjective, as you said. We appreciate your post and welcome you to come back and continue to share your experiences!
    ~ Peggy

  • sharonj
    2 weeks ago

    I have been to 10 five times in my life. I have had two babies. I have had two kidney stones. I have had one twisted and blocked bowel. I used to begin the Tramadol when I reached my migraines reach level seven or eight. My doctor told me to try to stop my migraines early. Take the Imitrex and the Tramadol early. This knocks me out for a day. I’m going back to my way.

  • Virginia
    2 weeks ago

    I’ve given up on going to the ER here they look at you like your a drug seeker and treat you like crap. I stay home I will call the Drs office before I go to the ER. He gives me a quiet room a shot and sometimes injections til it helps a bit than sends me home to sleep it off. It’s the migraines that last for weeks on end that no 1 will ever really understand unless they have migraines. That’s all that I can say. You dont know pain til you’ve had migraine pain for weeks.

  • Peggy Artman moderator
    2 weeks ago

    Virginia,
    Welcome! I’m so sorry you have had such bad experiences in the ER. You are not alone with this. I’m glad you have a doctor you can turn to when a migraine attack gets out of control. I think most health care providers try to keep us out of the ER with preventive, abortive, and rescue medications.
    ~ Peggy

  • Virginia
    2 weeks ago

    My husband will usually look at the Dr and tell them her 8 is a 20 to us. Because of all the pain I’ve had all these years. So it’s TRUE we are all different.

  • d-m
    2 weeks ago

    “Well, I was an eight, but now that I have to figure out how to rate my pain on your scale, I am definitely a ten.”

  • Peggy Artman moderator
    2 weeks ago

    Hi d-m, thanks for contributing to this forum. I understand your predicament with pain scales. I use an app to log each migraine and it tells me what each number represents. When I’m in a migraine fog, it is helpful to have these reminders. I hope you can figure out a system that works for you that works. Keep us posted.
    ~ Peggy

  • Virginia
    2 weeks ago

    Peggy what app is it that you use? If I may ask?

  • dslay
    4 weeks ago

    I agree with this because I say 3/4 is where I start having issues and treat also. I told the ER 10 one time after I had a 3 day migraine and had already vomited twice. Even though I told them this, they wouldn’t leave the lights off or even down in the room and only gave me pain medicine and sent me home. After another 24 hours and another vomit, they still treated me the same, so it all loops right back to how we are often treated as medication seekers. Since seeing a headache specialist and getting my daily and rescue meds under control (and having a clinic nearby that is open late), I haven’t been to the ER in ages for a migraine. At this point, I would honestly wait one out until the clinic near me opens if needed simply because the doctor there listens and will turn down the lights and whisper to me and give me a good shot without accusation or much question.

  • Allyson.Ellis moderator
    4 weeks ago

    Ugh. ER visits can be the absolute worst, dslay. I am glad you now have access to a clinic that is more receptive and are seeing a specialist who is helping find the best medications for your symptoms so that emergency migraine situations are less frequent. Thank you for joining the conversation. Wishing you a gentle day. ~Allyson (Migraine.com team)

  • Justclovis
    1 month ago

    I personally love the pain scale from Hyperbole and a Half (equally funny & heartbreaking webcomic). Yes, the pain scale question is ridiculous *because* of the subjectivity. I’ve suffered from chronic migraine for close to 50 years now, since I was a child, and I’ve never been to the ER for it. My parents felt it was too expensive for a “headache”, and I guess I just internalized that attitude. I once vomited all over the dining room table at dinner and was just sent to bed because I couldn’t articulate that my nausea was part of the headache.
    After discovering triptans, I thought I was in heaven because of the blessed relief; but in a (far too brief) few years I had to stop taking them because they gave me blood pressure spikes. My mother suffered multiple strokes, so caution is the better part of valour, here. My neurologist’s suggestions consisted of beta blockers or narcotics, both of which I refused – I’ve seen the results of both. Frequent pain seems preferable. I rate my migraines from 3 (mild, functional but impaired) to a 7 ( clutching my head and moaning uncontrollably in a dark room and stay the hell away from me); but my pain scale runs from 1 – is there something wrong here? to 10 – I am unconscious from pain. I once disconcerted a nurse when I went to the ER for an unpassed kidney stone and I told her I was at a 7 because I could no longer control my vocal response to the pain. The look on her face said she didn’t believe me and that I was underating my pain. So it really is terribly subjective. I’m just incredibly grateful that my migraines have never reached above an 8, and at my worst have never exceeded 20 days out of the month.

  • Cgaston79
    1 month ago

    I have had chronic migraines for the last 22 years. And I worked as a Registered Medical Assistant and Office Manager at a pain clinic for 5 years. ALL of our patients knew to never tell the doctor that teir pain level was a 10. If they did he would explain that the Latin word for Nine is derived from the word “execution “…so, if your pain is as painful as Christ being executed on the cross, that is the only time to use a 9. And 10 is if you are ready to have whichever body part that hurts amputated immediately.
    Therefore, I never use anything other than an 8. No matter if I would honestly have my head chopped off because all of my preventative, quick acting and last resort meds have not worked. I receive 9 Rizatripain a month. Most time it take 2 to make it fo away after everything else. But I am writing this with a migraine because I have 15 to 20 migraines a month and never have the medication i need to get through. BC powder is tearing my stomach up, but I would rather take it than be scrutinized and judged in the ER just another drug seeker.

  • Mmelle
    3 months ago

    I’ve had headaches since childhood and am use to not being taken seriously. For most of my life I was told it was tension causing my distress and I should relax more. I saw a neurologist when I was in college who did X-rays and declared me to be a baby. Later, I know I was labeled as a drug seeker when I tried to get help with the pain in my head. A medical student studying with my doctor suggested that I had migraines and he agreed with her and began trying to treat me more seriously. Years later another med. student suggested that I be referred to a headache specialist and I was. I then had to avoid possible triggers and keep a journal. It turned out that my triggers are more related to weather and that although my headachesaren’t tension headaches, tension is a trigger for me. Certain smells and lack of sleep will also contribute to a migraine. I am adverse to bright light and loud noises and have an overactive startle mechanism. As time passed I moved from chronic to intractable migraine. I was always either recovering from a migraine, in the midst of one, or feeling the onset of one until my headache doctor told me that I would be a candidate for Botox, which was covered by my insurer. Botox didn’t take away the migraines, but they aren’t as severe and I actually have some migraine free days with it. Recently, I was surprised by an absolutely killer attack. I didn’t call it a headache but instead it was for me a head pain. Ache seemed too passive a term for the condition that floored me. I was taking gabapentin for the pain and living on tea, crackers and ginger ale. I was asked, as usual to rate my pain. I couldn’t give it a 1 to 10 number. I said 7 1/2 because like others have written here, I knew that if I gave a number that was too high or too low I wouldn’t be taken seriously. I also felt it wouldn’t fit neatly into a little box. My doctor gave me prednisone to titrate in hopes of breaking the cycle. It worked! My headache specialist knows my resistance to pain. She has seen me in tears and has sometimes laughed with me. She knows that when she is injecting Botox into my scalp, I can sit still. I told her last time about how odd it is to be getting these injections now after years of being suspicious of dented cans because of botulism.

  • glassmind
    4 months ago

    I generally, say “This face. This is my pain level.” The nurse will pause, look at me, and say a number. Usually, 8. And I agree.

    I find this approach makes them connect with me, see my pain and empathize with me. It also forves me to get out of my head and genuinely tune in to my body. I find when I do this my pain is often mucb higher than I might have numbered as living with chronic pain from numerous conditions has cultivated a high pain tolerance and minimization.

  • petmigraine
    6 months ago

    There’s really no way to generalize a one-size-fits-all pain scale. Isn’t it enough that it’s 2am, we show up at the expensive ER, we’re doubled-over, sweating, shaking, vomiting and we say we’re in pain ? We can’t fake that. I mean, it’s not like we’re just there because there’s nothing good on tv at that hour… Plus the level of pain is not the only issue. I can’t walk through a doorway without hitting it due to vertigo so my vertigo level is an 8. I can’t keep anything down so my nausea/dehydration level is 9. I’m wearing sunglasses and whispering so my photophobia and phonophobia is level 10.. My hubby who drove me there hasn’t slept, getting up yesterday @ 5am for work, putting in a full day then coming home to witness my issues..his and my level of patience/okay-to-wait-longer is at ZERO. So now you’re asking me to make a decision on a scale from 1 to 10 ? I can’t think period. And you’re going to judge me and base my treatment on the answer from my pain-filled and addled brain ? What about the guy who walk in the door unaided, with an obvious broken arm. Do they need to ask him his pain level ? Will they use the answer to determine how to proceed ? What’s the point ? What does it serve ? I think it’s belittling and discrimination to hold us hostage until we give an expected answer. If I could function and think clearly enough to do that, I wouldn’t be in the ER in the first place. 🙁

  • Elizabeth Roberts-Zibbel moderator author
    4 months ago

    petmigraine, sorry about the delay in my reply, but I agree with you completely. Unfortunately, the state of pain care at my hospital is now even worse. They don’t ask for a pain scale number anymore because as part of a misguided response to the opioid crisis, they’ve stopped considering pain a vital sign, and treating pain is no longer something they do at the ER. A broken arm, they can x-ray and set (and I have to assume that guy would get something for pain, lucky him). I feel very, very fortunate that my CGRP medication is preventing my attacks from reaching ER levels, because I don’t know what I would do. I have felt, and I’m sure you have from your descriptions as well, that I would literally die from the pain. Take care of yourself and thanks for being here! ~elizabeth

  • Savta45
    1 year ago

    Very well written. Yes, I do find the pain scale to be extremely difficult. Yes, my 5 can be another persons 8, or someone else’s 3. And, my objectivity goes straight out the window when I’m in pain, the more the pain, the less objectivity available. It’s pathetic, but true. And, truth be known, I simply don’t want to answer questions when I’m like that. Don’t bug me. Don’t ask me to THINK. I’m lucky I can remember my own name right now, & you want me to do a qualitative analysis? Psht. Right. You may as well be asking me to calculate how far away the nearest star is, in light years, using only numerals equal to or divisible by pi. Did that make sense? Probably not. Math is NOT my friend, under the best of circumstances. But, you get my drift. Ask my dog to sing Vivaldi, & you might get better results.
    In any case, yes, it’s all health professionals have to go on. Except for with children, where a picture of a face is used, that goes from smiling to stoic to bawling, & kids are asked to point to what best describes how bad their pain is. Maybe that could be used for adults as well.
    My own indicators of how bad it is are 1) can I think of things other than the pain? Am I able to distract myself from it at all?, 2) am I able to rest? Can I lay/sit still during this pain, or am I squirming around, moving, trying to get comfortable & no matter what I do, I can’t get comfortable? 3) Am I actually shaking, quivering, trembling with the pain? 4) Am I nauseated from the pain? 5) Do I feel lightheaded from the pain? Interestingly, when I’m in severe pain, my blood pressure takes a nose dive. I already have fairly low pressure, but when I’m in severe pain, it goes REALLY low, I’m talking 70s/30s. Kind of a shock reaction. Which makes giving narcotic pain medication a bit dicey. Must be monitored closely.
    So, I try to keep an eye out for myself. While I don’t like to take medication unnecessarily, I also can’t let it get out of hand. It’s really better to catch it early than let things get risky.

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    savta45, I love those questions! I hate the “shaking, quivering, trembling” phase. Thank you for being here! ~elizabeth

  • deedeevee1
    1 year ago

    I too use my own personal scale. And try very very hard to avoid the er. But if my pain is a different pain and it’s past a 7 on my own scale and I do go to er I’ll tell them it’s a 7 and that I don’t want anything for the pain just tell me what’s wrong. That normally gets them passed the stigma

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    deedeevee, good idea!

  • JayKay57
    1 year ago

    I never fully realized how the medical staff really feels about the pain scale until I was in a car accident and suffered a brain injury. I remember the nurse asking me to rate my pain. I told her 12 hoping she would believe the seriousness of my pain. It felt like someone was hammering huge 6inch long spikes into my head. She turned away from me pausing to tell me it’s a 10. No one did anything for me that night. The next morning a tramua surgeon asked me how I was doing. After I told her about my head killing me all night she ordered a CAT scan and then I was rushed to the big hospital because I was bleeding in my brain. I have had migraine’s ever since and it has taken me 3yrs to finally find a Dr who believes me about my migraine’s . I really don’t have much faith in the medical community.

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    JayKay57, I hate to admit it but I really don’t anymore either. I’m grateful to have found a good neurologist finally (by going back to the best one I ever had, who is now two states over). You are definitely one of the horror stories regarding medical professionals not believing us. It sounds like you’re lucky to be alive.

  • Dn2292
    1 year ago

    Good article! I suffer from constant severe headaches that are classified as migraines because there is no other label. I don’t get on-set, mine don’t go away, just always there 24/7. So needless to say I live in a dark room.

    First thing I tell a New doc is none of this “ I’m a 10” and then go talk on the phone or sit up straight or even “ look normal” average person has no clue what a butt load of pain is, and that is a good thing. My 9.5 is pretty much loosing control of all functions, even the movement of my lungs causes pain.

    My wife is tired of me after 19 years, hearing my pain scale. I break it down such as 7.75 or 8.25

    If there is someone accompanying one of my doc’s at an appointment, doc always mentions my pain level “7.8” is really a normal persons maybe 14 or 15 because of my ability to deal every day with said pain.

    Everything is relative, tmrw everything might change!! Attitude is everything:-)

  • Elizabeth Roberts-Zibbel moderator author
    8 months ago

    I’m so sorry your pain is 24/7. That is my deepest fear. You seem to be handling it all right, and I agree that attitude makes a huge difference. Thank you for sharing this! ~elizabeth

  • Lise Paul
    1 year ago

    I made up the 1-10 painscale for myself when daily headaches started 16 years ago, so like it. I have learned to semi-function 7.5, but 8+ forget it.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hi Lise, it does help to tailor the scale to your own experience. Thank you for the comment and take care!

  • Nikki Krug
    2 years ago

    I was told by a doctor that a pain # is different to every single person. I thought that made sense but how do you know mine until you get to know me. My pain level now has changed many times and it’s more than just every year now. What I thought was a 10 just a year or so ago would be like jumping out of bed every morning, taking a bath, putting makeup on, getting all dressed up and saying I’m going somewhere. Well, maybe not just a year or so but maybe 5. Now my 3 or 2 is like that 10. The same doctor said he knows it is hard for us but our good days will eventually become our bad days & the days we thought were bad will become bearable. It’s so wrong and unfair. Why can’t we go backwards? I can’t remember a day under 6 or so in years. The only time i get to go out of town to do something sort of fun is because I have a doctor’s appointment and we. have to spend the night and we have extra time. I haven’t been on a vacation since I lived in Florida from 2000-2005 & I had to work most of it. I guess my last vacation was my Senior year of College in 2000. We took little trips but not a full blown vacation. Sometimes now when the nurse asks (if they even bother) I just make up a #, it’s all irrelevant anyway. How does she know my pain and I definitely know she could care less.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Nikki, sorry for my delayed reply! That is exactly it, the pain scale changes. Now they will probably stop even pretending to care, because most hospitals have stopped counting pain as a vital sign. It’s so ridiculous. Thank you for being here! ~elizabeth

  • Diane101010
    2 years ago

    I am blessed with a wonderful ER. ( Thank you God.) I, also, begin taking meds and resting at a 4. If I don’t – it rapidly spins out of control, my blood pressure sky rockets with the increasing pain, and my meds won’t stop the pain.
    I have a saying, “I used to think giving birth without pain killers was a 10. I now give that an 8. ”
    Hubs now has my permission to drag me to the ER when he sees fit, because I have a tendancy of trying to tough it out,
    I wish there was a non- ER infusion sight.

  • Tamara
    2 years ago

    I am super lucky to have an urgent care center close to – they have some of the meds I use for migraines and usually are able to give me a dark, quiet room to lay down in until the meds work.

    The ER on the otherside puts me sitting up in normal chairs with an IV ….. but if I need anything stronger than ketorolac and triptans – I need the ER. My last visit was my first experience of being sent home with no improvement in pain levels (migraine had been a 9/10 for 8 days – dehydrated and barely able to eat the whole time; it lasted another 3 days and finally stopped by itself). When my pain was intractable at urgent care, they sent me to the hospital in an ambulance and I was admitted for 5 days until they were able to get it down. I think I will go to urgent care no matter now …. they are nicer and more comfortable and actually don’t give up on me.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Yes! I know I’ve fantasized in support groups about a place like that, where you could just go and have your protocol on file. Even if you could make an appointment for later the same day or the next day, that would be fine. I totally agree. I’m glad you have a good ER though. I do too, and they seem to be really rare.

  • DMN
    2 years ago

    The American Pain Society (?) has a ‘Quality of Life’ scale and it gets more info than just a number to describe the migraines. I truly wish the Medical community would use that scale instead of the pain scale…it isn’t always about pain…but quality of life …that helps to explain just how much we are affected by migraines…more than pain…so much more.

  • Donna
    2 years ago

    The 1-10 scale is not only different between people but I have observed that the 1-10 scale can also shift when a person experiences a new unrelated pain. I saw that after she experienced the passage of a kidney stone my daughter’s pain scale responses for her chronic migraine dropped by about 2 points compared to before the stone. Her neurologist thought she was improving until I told him about the kidney stone. The kidney stone pain was worse than what she had been able to imagine as the worst pain so the whole scale shifted.

  • Donna
    1 month ago

    My daughter has also experienced a “shift” of her pain scale when she also passed a kidney stone (a side effect of the topamax she was taking for her migraines.) That was about 6 years ago. About 7 months ago she shifted again when she turned both ankles, severely spraining one and breaking the other in three places. Since it was 10pm she refused to go to ER- preferring to wait for the morning to call her doctor for a referral. ER has not proven to be a good place for her to go. Luckily her neurologist’s office does infusions at their office for migraines and other conditions. They can usually get her in the same day. What she used to call a 6 or 7 is now a 3 or 3.5.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    That makes sense to me, Donna. After I had a migraine more painful than anything I’d experienced before (even though it was not an unrelated pain), I’m sure my scale shifted some too. I have never had kidney stones thank goodness, but that headache pain was worse for me than pancreatitis or childbirth were which I can’t say about most of my migraines, only the very worst ones. I hope your daughter is feeling well lately. Thanks for your comment!

  • mindwiped
    2 years ago

    My primary and I know that I have a pain scale, and a migraine “pain” scale. Hubby is also a migraineur, and one trip he was in for, I said, I know there’s no eleven, but for his migraines, this IS an eleven. However I think that coming from a spouse it’s taken differently.

    I usually cave after three days at 6+ and go see my primary for toradol. Or hubby will drag me to the ED after a migraine seizure. Because of the seizure, I get better migraine care than just a migraine. Plus again, a spouse dragging the other half in helps.

  • mindwiped
    2 years ago

    Elizabeth Roberts-Zibbel-

    For me, they’re weird…one min I’m here, and hurting, then I come to, usually with hubby way up in my face asking confusing questions. For him, I’m sure they’re terrifying, I’m migraining, and then I stop responding, and start twitching. I’ve never gone into full fledged flop on the floor and spasm, so I count myself lucky, but I know it could happen. I’m on meds to try to prevent the seizures, and they seem to be working, so I’ll count my blessings.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    I’m sorry you suffer from seizures with your migraines, that sounds horrifying.

    The migraine I had in May of 2014 – my worst ever – I was calling it an 11 when I went in to the ER. Now, it has just sort of become my new 10. My spouse gets migraines also. Take care!

  • MarkF
    2 years ago

    I also like the Migraine Buddy rating of functional ability and no longer use a 1-10 pain scale now that I understand my migraines better. I am 100%-1% functional. My migraines can last days and I can be at different levels of pain and functionality during the period. Pain is only one dimension of my migraine. Light/odor/sound intolerance, nausea, vertigo, sleepiness, lack of sleep, mental inaptitude, social intolerance, etc all are dimensions of having migraines. The ER is the last place I would go to treat my migraine due to cost ($750 co-pay just to walk in the door!).

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    MarkF, yes, right now I don’t have insurance and fortunately I haven’t had to go to the ER since January. I haven’t kept track for a while but I found Migraine Buddy hard to use. When I do track, I use “My Pain Diary” but I think I’ll give Migraine Buddy another try.

    Really, I only use the ER when I have done everything I can at home and the pain is still intolerable.

    We’re glad you’re here!
    elizabeth

  • onehsancare
    2 years ago

    My scale is almost identical to Elizabeth’s. I copied it so it can go in my neurologist’s chart. I’m on day three of a level 3 in terms of pain, but the Toradol is hardly making a dent. I took an oxycodone last night, but I can’t do that and function as a lawyer today at work. I hate my head.

  • Holly Baddour moderator
    2 years ago

    You make a very good point, onehsancare – And it’s one that some other commenters have hinted at as well. Sometimes it’s not that the pain level is off the charts, it’s the length of time in moderate pain that can get to you. Several days at a three can really begin to wear down the reserves. And if we then begin throwing all the meds we have at an intractable migraine, we then begin juggling side effects of said medications with the pain of the migraine itself. Quite a mess. You are not alone in this and I’m this one lifts for you soon! Holly Baddour (migraine.com moderator)

  • sitaylor0328
    2 years ago

    This story hits home with me. I never know what I should say my pain scale is when I have to visit the ER. It would seem obvious to me, that because I am there, it’s pretty severe pain. I was diagnosed with migraine at age 6. I am 36. I didn’t start seeing a neurologist until I was in my 20’s. I had been self medicating, taking alieve so much I was causing ulcers, digestive complications, and rebound headaches. Not until I started getting help with a neurologist, did the severity of my migraines appear to me. For years my neurologist would suggest botox and I never would listen because to me, it was never that bad. I had dealt with this pain on a regular basis for 20+ years before I ever saw a neurologist. Ever since then, it has been a struggle to get affordable relief. Reading this story brought me to tears because just saying give me a number from 1-10 of the severity of your pain may seem simple. There are so many people that don’t understand that not every migraine is the same. Even if you have chronic migraine. Having an invisible disease is very frustrating, heartbreaking, and can become depressing. I now do take botox, valproic acid, and zomig to try and regulate my migraines which has been a lot better. With there being no cure for migraine, it’s just hard.

    SHarkless
    Lexington, KY

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    It is very hard. I agree. Do your Botox treatments give you significant relief? Have you stopped taking NSAIDs altogether? A few years ago I started having severe back pain which turned out to be an NSAID-induced ulcer from lifetime use. My doctor prescribed Protonix and I’m sure he also told me to stop taking NSAIDs but for some reason I continued (I have no idea what my thought process was). I became so ill that my iron dropped extremely low and I had to get weekly iron infusions for a while.

    Anyway I definitely empathize with you. Take care <3
    elizabeth

  • aks868
    2 years ago

    I find the pain scale so confusing because sometimes the pain is lower but the accompanying symptoms are debilitating. I mean needing to rock back and forth, take dramamine, sleep, and then being unable to sleep, needing quiet and darkness, while wondering why the head is not making me want to pull my hair out is confusing and I don’t know what to answer. Is it pain or the effect on your ability to function? Last night I had a 9–no questions–I thought my head was going to explode and i literally could not lie down because it hurt too much, but I did not go to the ER, bc the experience would have been too terrible. But then there are the times the migraine has gone on for over a week and I have no reserves–does that mean I am saying my pain is higher than it really is or is it just because I can’t fight it anymore. Some days a 9 is a 9 and somedays the 9 is a bearable 7. The scale just doesn’t work. It’s too linear and does not take into account extenuating factors. Either way, most of the time, if I have to go to urgent care or the ER, I say an 8 or above. A few times I have said a 6 or 7, but the treatment is less aggressive and I go home hours later feeling exactly the same way. For the most part, I try to avoid the ER unless everything has failed because the only things that work are opioids.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    I totally understand. I don’t go to the ER unless I’ve been at moderate pain (my 5-6) for a week or more, or a 9 for 2 days or more. I am lucky as my ER has been treating me extremely well for a while but there is one doctor who is a jerk, and I always worry the pendulum could swing the other way. All it would take is a new ER administrator and I would be SOL again. 🙁 Hope you’re feeling okay today.
    ~elizabeth

  • Douglas
    2 years ago

    In general I use the scale on the Migraine Buddy app, which is an intensity scale versus a simple pain scale. While it still starts with pain intensity it adds descriptions like:
    1-2 “…does not limit activity”
    3-4 “…can do most activities”
    5-6 “…unable to some activities” (this is where I start tracking in the app, but everything goes into the journal)
    7-8 “..unable to do most activities” (8 is where i begin adding my own criteria, if I have partial paralysis on the affected side it is >= 8 regardless of other symptoms).
    9-10 “…unable to do any activities…” Full on hemiplegic paralysis without cognitive impairment, or partial paralysis with cognitive impairment and or a fugue state. 10 is reserved for Full on hemiplegic paralysis with impairment — 10 is indistinguishable from a TIA or stroke.

    So, my $.02…

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    I keep thinking about why I treat at a 4, when 4 is consistently “hurts a little more” or “can still do most tasks.” I think it’s because with my lifetime of migraine experience, I know that once I hit my 4, the current pain situation is not going to improve and is going to get worse. At a 3, I know that it could still fade out on its own. So the pain itself might still be at a 4, but if I don’t take an imitrex it could easily be a 5 or 6 within an hour. And back from my “trying not to treat every migraine” days, I know that not treating a 4 does in fact lead to a severe situation. So my fours are like… a four with lots of potential.

    I found the Migraine Buddy app to be not as user-friendly as a pain tracker that I use instead called “My Pain Diary.” But I go for long periods without using one at all because if I don’t have a doctor who needs to know, I don’t like to spend more time than necessary thinking about those details.

  • Deb
    2 years ago

    Where are you getting CGRP treatment? You must be in a clinical trial? Is it helping you?
    I am hoping this drug gets approved soon.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi Deb, yes, I’m involved in my second CGRP clinical trial. I try to always link one of my previous stories about it, or the one in which I was interviewed before I was a writer here. The interview story has the most info:
    https://migraine.com/living-migraine/cgrp-drugs-studies-a-patients-experience/

    Thanks! I hope it gets approved soon also!

  • Tamara
    2 years ago

    I never say 10 because I know it could always be worse unfortunately as my migraines continue to get worse and less responsive to meds ….

    I use the pain scale from the headachenetwork.ca – severe pain at 7 is very difficult to continue with daily activities and 8 likely lying down or sleeping. My migraines stay above 5 which is moderate pain and the need to slow down, pain getting quite distracting. I do have a few urgent care doctors that weren’t too happy for letting me leave with my pain still at a 5/10 but experience shows nothing brings it down.

    I’m normally an 8 when I go to the urgent care when I have had a rough copy of days because I can’t drink well and start to get dehydrated – i need the fluids more than anything.

    Hopefully this was readable …. a bad migraine hit (thought I had a migraine yesterday and worked through it was it was only the prodome symptoms for this one … sucks). So very medicated up but pain levels are down so successful treatment for once 🙂

    Hope everyone has a wonderful lower or pain free weekend.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    I agree with you on the fluids! Not eating or drinking for several days really increases my chances of needing the ER, and when you’re at a 7/8 or above for any length of time the dehydration is going to happen. I hope you continued feeling better Tamara!

  • nails
    2 years ago

    The pain scale was one of the reasons I no longer consider an ER trip an option; I’d rather suffer at home than try to plead and convince the intake nurse, then the doctor that the pain is real. The whole process only increases my stress and pain. My last ER visit ended before it could start when the intake nurse asked the reason for my visit, I said migraine and she said, “awww Hon, are you sure you need to be here?” Despite the fact that I have written instructions from my neurologist/migraine specialist that I show them, that does not call for any narcotics or opioids. I’m tired of having to prove my pain.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    nails, that’s horrible. I feel so very lucky right now that I have the considerate ER that I do. I never take it for granted, because I know the pendulum could swing back at any time. Right now there is only one doctor there who is a jerk to me and I’ve been good at avoiding him lately. Take care <3

  • GardensatNight
    2 years ago

    I, too, hate the pain scale. I give one answer, and then hear someone behind the curtain in the ER give a much higher answer with seemingly no difficulty. But I guess I do not know what’s going on with them. Probably it’s just that my pain scale is skewed. I know I need to medicate faster/sooner before the pain can build.

    For me, 10 was having a biopsy done when the only pain management offered was “take 4 advil.”

    My 9 was right before we left for the ER one time when I was lying on the floor of the bathroom crying and begging my husband not to touch me. Finally he said I either had to get up or he was calling EMS.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Ugh I have had those bathroom floor moments. I’m sorry about that biopsy and hope you’re feeling well today. Take care and thanks for your comment!

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