How do you describe your pain? Numbers on Pain Scale, Adjectives, Silly Weird Pain Faces.

 

I hear it all the time from doctors and nurses: “Tell me your pain on a scale from 1 to 10”. I always cringe at the thought of summarizing my pain and fatigue down to a number. I also get scared at the thought that I have never felt below a 4 or 5. How can every patient from a broken leg, to a chemo patient, to a stomach virus have the same silly faced pain scale picture to choose from?
A sample of the typical pain scale. a line with tics in it is draw, and numbered zero to ten. Above 0 is "no pain", above 5 is "Moderate Pain," and above ten is "worst pain." Below, a series of line cartoon faces which are numbered evenly from zero to ten. 0 has a big smile. 2 has an "okay" smile. 4 has a straight line mouth. 6 has a down turned mouth. 8 has a very down turned mouth and pressed down eyebrows. 10 looks like 8 but with lots of tears.
We all know that pain and fatigue is different for everyone. Some people who have lupus use great adjectives to describe their pain, like a “piercing” pain in their shoulder, or an “achy” pain that feels like they’re bruised all over. I’ve found that using descriptive words helps others understand my pain because I’m painting a better picture for them to relate to and understand.

 

We all have ways to communicate how lupus affects our lives. As an example, I once used a handful of spoons to describe to a friend what it was like to live with lupus and to be forced to make certain choices when it comes to performing the everyday activities that most people take for granted. People with lupus have to parcel out their daily activities and tasks because they often aren’t able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my “spoon theory”with family and friends as they ask me how many spoons I have left, or even give me spoon gifts to brighten my day.

 

I know that as much as I try to communicate what I’m going through, it sometimes feels like only other people living with lupus really get it and understand. That’s why message boards like this are so important.

What methods have you tried to explain what living with lupus is like? How do you describe your pain to others? Do you use the pain scale, descriptive words, or maybe that chart with all the expressive faces on it?

 

 

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook. 

©2022butyoudontlooksick.com
  • Kellye Bullock

    I struggle with this, too. While I think I can describe the intensity and quality of the fibro pain well, what most people don’t understand is that most times what isn’t recognized is the duration of pain. My pain level may only range from 3-7. “Oh, your pain is only 4?” Yes, it is 4, but it is 4 all day, everyday for a week! It wears you down! Just having a 4 all day is at least one spoon! (Just now discovering the spoon theory and LOVE it!)

  • Jennifer Hayes

    This is the pain scale I use at my physiotherapists, he has a great sense of humour.

  • Jennifer Hayes

    I did that too, haha

  • Jennifer Hayes

    I concur 100% and I’ve been told by my friends always to embellish the pain because it’s quite clear I’m virtually crippled by pain but if you use the 1-10 pain scale it is not nearly descriptive enough.

  • Jennifer Hayes

    Whereabouts did you go in the Netherlands? I live in The Hague and I have nothing but praise for the people I have seen in the health system.

  • McTuffy

    I read an article recently about a new device that’s being used in some ERs to help gauge pain levels. It’s kind of like one of those forehead thermometers with the flat, round surface but apparently is designed to pick up signals from nerves or something that react during pain…Makes me nervous, because what a device says is one thing could be something completely different to 10 individuals!

  • Jake Enns

    Yeah, the scale is a guide, certainly not an objective measuring tool. For someone who has never had any physical problems or diseases, to them a bad toe stubbing incident may be called a 8 or 9 to them, but for me that almost goes unnoticed, I have too many other severe piercing pains to deal with, so it’s just a subjective guide but it is better than not having any comparative measuring system.

  • Larick

    You’re powers of description are awesome and your description is very similar to my pain. The pain Scale is absurd but The idea of describing by each part didn’t even occur to me. I am also a fibromyagia DX (w sjogrens and L3-S1 disc degenerate) and can be really hard to tease apart the pain into seperate things with completely different feelings and numbers. THank you so much for sharing this, it was validating to read.
    Rick

  • Teddy James

    I got post laminectomy syndrome. (failed spinal fusion). It’s almost impossible to describe 14 yrs of agonizing pain that I have to go thru for the rest of my life. Its like having a lava porcupine inserted into the spinal column, radiating pain from hips to knees. It doesn’t go all the way to my feet anymore after radiofrequency ablation of nerves. (killing nerves w/ hot electric wires to burn out nerve endings) Drs create lifetime customers. Not cures. Wish I could have sued the dr that performed the operation, be he has passed away. Anything you go to a Dr for, they will always find something to scare the crap out of you so you can be a lifetime customer too.

  • Kylyra

    I’ve lived with severe rheumatoid arthritis for over 10 years now. I just moved to the Netherlands and am dealing with a brand new rheumatologist. When I saw her for the first time, I complained of neck and knee pain. Yet her only questions were regarding my hands and feet which had their usual swelling. I didn’t even think to say anything about my hands and feet. They always hurt. Always. It’s more a matter of what I can pick up or how long I can walk without pain.

  • John

    I always give a low estimate because I figure that if my body was literally engulfed in flames, that would be a 10. So in a flare (no pun intended), when I am in tears and cannot move from bed, that’s about an 8 to me. I like to give myself some room to grow. Someone told me she doesn’t think I really understand the pain scale. It’s so subjective, isn’t it?

  • Tiffany

    I have been diagnosed with severe Ehlers-Danlos Syndrome. (legit thats all they told me, like i dont even know what type or strain it is). So I’m in severe pain almost all the time.

    I hate this question! Every time a doctor asks me this i have to audibly walk through things. Like “oh yeah, tearing my ACL was the worst pain ive ever felt, so i guess that this random issue is like an 8 for normal people…” which always upsets my doctors. They want a straight forward for you. If i answer truthfully (oh such and such pain is a 5 for me) than they dont take me seriously.
    I have a somewhat higher pain tolerance because of the constant pain im always in, so I have to answer in terms that they are expecting. Like I know that i have high pain tolerance, if i say that say my rib dislocation (for like the 50th time) is a level 8 pain, there is sympathy, and they actually want to help. In reality, i always dislocate my ribs, hips, etc. so the pain is (for me) a 3 cause im so used to it. But there is something different this one time, and i actually need them to look at it.
    I find going on the higher end of the number scale makes them want to figure out whats wrong with you. Also I am morbidly descriptive and have a very good imagination (which always makes them wince). So higher numbers and interesting descriptive words seem to pass off how im feeling.

  • Arketa

    I’m currently a fibro dx, with a slew of tests over the next few weeks to … idk? Verify? Exclude more things? Profit?

    I give a feet and up description, usually. And usually I’m only asked in breakthrough scenarios. My feet are a seven and feel like I’ve been waking barefoot on burning ice. My legs are an eight with a live electric wire running up the back, passing through my dull, aching five knee joint, before meeting up in mgt right frozen iron tailbone, which is attached to my nine hips. My hips are hot coals throwing off bolts of lightning into thighs. My seven spine is the hot-frozen flagpole midwinter, and my shoulders are the dual nines of burning, itching, lightning arcing up the sides and back of my neck, frightening fire ants into stinging the bone of my lower jaw into a six of jaw cramping and locking that’s making it difficult to make any facial expression beyond a grimace without pain. Oh you want an average? Eight. *helpfully makes the eight face from the chart*

  • Amie

    I one time answered that question with 11. My pain dr shook his head and no no it has to be 1-10.

  • Mage

    When I first went to physiotherapy for someone to determine what was wrong with my joints I was unsure if I was rating each joint on a 1-10 scale or if this scale was the same for my whole body just different numbers. All of my joints are in different places on a pain scale but their individual pain has its own 1-10 scale. As well as that depending on the day the whole scale can shift up or down. If I’m having a bad week what may be this weeks 3 could have been last weeks 7 because it varies so much. I can never explain this properly to any Doctor and i worry about whether they actually know how much pain I’m in

  • Aimee

    I think the difficulty for me is that my 10, as the worst pain I have ever felt is laboring and birthing my babies. But that pain was finite and purposeful. But while my worst lupus pain is never as painful as labor, it doesn’t end. I’d rather spend a few hours at a 10 and end up with a baby than spend weeks at a 6-7 with no purpose or sense. When you are in labor, no one expects you to carry on your daily activities. With lupus, it’s different.

  • Aunt Jane

    I tell medical questioners that my pain is at a 9, and they will never hear me say “10.” If a 10 is the worst pain I can imagine, for me that pain would involve two horse, two ropes tied to my legs…. I never get that far in my explanation; I watch their faces, and, when they “get it,” and I see the horrified look on their faces, I stop.

    I was outdone, however, by one pain management specialist who’s 10 was “death.” Really! Really??? He had been my pain management and physical medicine (PM&R) doc for several years, when something changed, and that new pain scale was a clear indication of it. I thought, “How sad that he feels he has to make that point with his patients. They couldn’t possibly be a 10 if they are sitting here in my office, alive.” Apparently, if dead people are not in pain, there’s no such thing as a 10 on the pain scale. I’m no longer his patient.

    Sometimes, if the questioner seems to really want the straight scoop, I will break things down anatomically and also qualify the pain. ” My left ankle, the skin over my Achilles’ tendons bilaterally, the soles of my feet and my knees all burn, at about a level 8 right now. And my hips, which literally have fractures in them, are a solid 9 after traveling here today. They feel like what you would expect broken hips to feel like. In this situation, I expend a huge amount of energy staying focused. Therefore, I’ve written this letter to help us get through this visit.” And so on.

  • kitty

    Im a physiotherapy student who also has lupus so i guess i might have a slightly different perspective. Im pretty rubbish at descriptive words, so as a patient i must be a nightmare. I always struggle with the scale…. how am i supposed to take this, do you want my personal 0-10 or the general populus’ 0-10 becuase im pretty sure theyre very different. My 1/10 is probably feeling nauseous and generally achey/sore and tired but its all pretty managable and i can deal with the day ahead, whereas general publics 1 is probably feeling pretty good just a bit tired. So is my 1 this persons 3…. But it cant be my personal 1 because I remember a time when i didnt hurt and i wasnt exhausted so surely that time would be my 1…..It’s all very confusing. The faces i just feel are condesending most of the time.

    What ive learnt though as a student physio (and a poor user of adjectives) there are other things you can use. Such as what times of day is it worse/better,
    what makes it better/worse, any specific activities that ease or
    aggrivate it, how does it compare to the other side, does it flit around
    or pulse, is it in one small point or is it spread out, is it the same/different as a pain you have elsewhere etc. These can be just as useful 🙂

  • Catalyst Spark

    I actually typed out a full explanation of what those pain scale numbers mean to me useing examples of injuries to try to give my doctor a good starting point for understanding what this number means the pain equates to for me. I used examples such as when I broke my foot to when I was shot and what that pain ranked as to me on said number scale. It worked, they use my personal comparison guide to understand where my pain is at when I give them that number so it really helped with proper communication. I also cannot help but chuckle when they make comments like “Most people claim this and that is a ten but you rank it down here.” so that’s a small source of amusement me, my doctor and the staff have when it comes to that pain scale. Sorry anyone who calls a broken finger a ten on that pain scale has never really felt pain that should rank as a ten.

    When it comes to descriptive words, I normally explain the type of pain I’m feeling from my fibromyalgia as a cold stabbing pain because it’s sharp, feels like a blade cutting into me but it also feels cold as ice at the same time. That’s the most frequent pain sensation I get, second place most common sensation is the stiff bruised feeling where something feels stiff and tense which feeling like it just had a run in with a made baseball bat welder and lost.

  • Janelle Butler

    I have created a “new” scale to use at my appointments that really helps. I use this first, then the pain scale. I call it the “lousy” scale, which gives a number to that overall lousy feeling that is just as incapacitating as pain. Its that awful way you can feel in the morning after not sleeping where it takes all of your strength to get out of bed (because you feel lousy there too!) and start taking pain meds, ibuprofen, etc and then lay on the couch for 2 hours until you feel better “enough” to shower and get dressed. Lots of days I’m a 9/10 on the lousy scale, but only a 5/6 on the pain scale which I use to describe joint pain, headache etc. (More “typical” pain) My doctor says the 2 scales actually really help. We need a “lousy” scale with these autoimmune diseases as the pain scale isn’t always accurate enough!

  • Henry Nancy

    My ex boyfriend left me 8 months after I caught him having an affair with someone else and insult. I want him back in my life, but refuse to have any contact with me. I was so confused and do not know what to do, so I visited the Internet for help and saw a testimony of how a caster help them to get your ex back, so contact the caster and explain my problems with him. . He cast a spell for me and tell me 24 hours my ex come back to me and to my greatest surprise, the third day my jessop came knocking on my door and ask for forgiveness. I am so happy that my love is back again and not only that, we are about to marry. Again thank Dr Olokum, you are truly talented and gifted contact your email: [email protected]

  • Dale Parkinson

    It’s a guessing game all the way around as I see it! As patients we undergo extensive testing and treatment trials until the appropriate professional deems symptoms, specific to each individual, to be most probable to fall under medically diagnostic columnS. Typically this labeling will require a new battery of tests for the patient so the physicians and other health care providers can further rule out all but hopefully one diagnosis. At that magical moment treatment can begin. Not that the patient hadn’t previously undergone any treatment. Quite the opposite in my experience when my formal diagnosis of MS with RA & OA took 5+ years to be definitive anyway. Prior to the newest diagnosis there was an abundance of prescribed potential remedies to treat all of the symptoms I had. Trying to see if they work at helping the symptoms or if they don’t work, don’t work in our bodies specifically or if they aren’t compatible with other medicine we need. Autoimmune Disorders are mysterious; I agree, but as a result that’s why this professional guessing game is commonly referred to as, “The Practice” of Medicine (like the Practice of Law) You don’t see other professionals or job descriptions referred to as Practice. Educators don’t Practice teaching; They teach! Student outcomes will differ and the lessons will be tweaked for different styles of learners, but the rest is Solid! I’m just saying its a practice and we don’t have any better ways available for determination of our symptoms to be given quicker, always accurate treatment! (Stepping down from soapbox. Exit stage right)!

  • I have RA and use the phrase “hot lava” to describe my pain during an evil flare up. Most people cringe at the thought, but seem to “get it.”

  • Miranda Felix

    I love the discussion going on in the comments! The, “if you’re really at a 7, you’d be in the ER”is not real applicable to me. The ER can’t do anything for me unless I get severely dehydrated (both the ER AND my own Dr’s have told me this). So, I just have to deal with it myself, and it’s annoying when I’m not taken seriously at a 7.

  • Kathleen Mulholland

    I love how you qualify your scale as a regular 4 is your 0. I did a similar thing this week. I told him that my 10 was curled into a fetal position and moaning, and that I’m currently a 3 (since it was early in the day…

  • Mim

    http://www.pinterest.com/pin/334110866079909201/
    I found this alternative pain chart which I’m planning to print out and give to several people!!

  • Trudy Hoyt

    Love the comment, sums up how i feel too. But if the doc is good other than that keep him. Oh there are days i wish i could give people a 1 minute burst of how i feel. As no one except my pain doc really understands and she has a chronic pain condition. But shes that needle in the haystack, i thank god everyday for leading me to her.

  • LupusOrchid

    When people ask me to score my pain, I have to tell them “my” pain scale. I tell them, “At any given time, I’m walking around with a normal person’s 4. That’s where my 0 starts because it’s never going to go lower than that. So if I say I’m at a 6, I’m actually around a normal person’s 9.”

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com..

  • !!! I Sarah Post This Testimony Coz My Husband Is Back Thanks To Dr.Ukaka

    My name is Sarah am from Texas, am a woman who love and cherish my husband more than any other thing you can imagine on earth continent. My husband was so lovely and caring after 3years of marriage he was seriously ill and the doctor confirm and said he has a kidney infection that he needed a kidney donor, that was how I start searching for a good Samaritan who can help,doctor has given me a periodic hour that he will live just 26hours left, that was how I ask the doctor if I can be of help to my husband that was how he carried out the text,the confirming was successful, I was now having this taught that since 3 years now we got married I have not be able to get pregnant can I be able to get bring again? That was the question I ask the doctor, he never answer his response was did you want to lost your husband? I immediately reply no I can’t afford to loose him. After the operation my husband came back to live and was healthy I was also ok with the instruction given to me by the doctor, after 3months my husband came home with another lady telling me, that is our new wife that will give us kids and take care of us, that was how I was confused and started crying all day, that was how my husband ran away with his new wife cluaralle. Since then I was confuse don’t no what to do that was how I went back to the doctor and tell him everything, he told me that, this is not just an ordinary it must be a spiritual problem that was how he gave me this email ([email protected]) that I should tell her all my problem that she can help that was how i contacted her and I do as instructed. After 3days and I have done what she ask me to do, my husband start searching for me and went back to the doctor, that was how we well settle she also told me not to worry that I will get pregnant, this month making it the fifth Month I contacted her am now 3months pregnant. These great spell cater is a great man, if you are any kind of problem you can contact him here on his email ([email protected]) website address: freedomlovespelltemple.yolasite.com

  • Laura

    My pain med doc has a similar face and number chart but they also add a functional description for each number. It helps me be more accurate.

  • You know what really “burns my biscuits” with this pain scoring… I’ll choose a pain level (which is usually 6 or better at most times) then my Rheumy will employ something called a Rapid3 scoring system which i’ve researched and pretty much is the pain HE/SHE believes i’m in. I’m like WHA? Having chronic pain, you definitely build up a pain tolerance that is higher than most and if the person assessing your pain has NEVER felt what your feeling why do they get a say in what you’re feeling. Would I be nuts to try to find a Rheumy with Lupus or some other chronic pain illness?
    Because i’m tired of being looked at like I have three eyeballs when I am describing my pain to someone with no point of reference. UGH…

  • Tony Turtle

    The major problem with the pain scale is, if the person asking the level has never experienced a dislocated knee or the pain of two bones rubbing together (I have osteoarthritis), how do they know how it hurts?

    If only there was a way to get a physical meter reading on it. If only there was a way to connect a meter up to the pain receptors in the brain, so that the doctors could check it as they do with temperature or blood pressure.

    The other thing that can’t be measured is fatigue, you’re either tired or very tired. That as far as I am concerned is yet another thing that could do with measurement, and I know my daughter (ME/CFS) would like them measured so the doctors could do something, or at least have an idea how bad it is.

  • Zipporah

    I don’t hate the pain scale, but I don’t love it either. Since I developed RSD/CRPS 11 years ago which then morphed into fibromyalgia 7 years ago, I’ve had periodic pain flare-ups, especially during the transition to fibro. I was still asked by docs to use the scale, but every time I had a fare-up, the pain shot off the scale. And stayed there. After those flare-ups, my average pain level had migrated past the scale and refused to go back. So what did I tell the docs? In my mind, I had to “shift” the pain scale range to cover my new average pain, trying to gauge my ability to cope with and work through it as well as the variations in pain itself. Then, I gave them a number. What they didn’t know was that that number meant something different from the last time I’d given it to them.

    Now, I use descriptions more than the scale, even when docs press me for a number. The scale is good for saying “I’m in enough pain that I can’t ignore it, but it could be worse”, but not for saying “my knee is a 5, my back is a 7, but overall I’m a 4”. And where does fatigue factor in on this scale? It’s just as influential and present as the pain but how do you put a number on something so intangible and unspecific?

    I definitely think that descriptions and comparisons are more accurate, useful, and understandable than the pain scale for describing our chronic pain and other symptoms.

    http://www.invisiblezee.com

  • Fairycakepixie

    I’m a fibro person and have recently started to keep a more formal pain diary and whilst I have done so less formally in the past this time my pain and fatigue is worse and the bottom of my scale is 4. Measuring all the different types of pain on the same scale is impossible though. Because you’re trying to compare things that are passing like an agonising shooting pain against a pervasive, constant throbbing or ache. It doesn’t work. At its peak shooting will be a 9 but I’ll take intermittent shooting pain over a constant 6 (purely on pain). Instead I measure against 1-10 scale but based on how well I can cope with doing things. I am more capable when I’m struggling with shooting pain than persistent pain which has a far greater effect on my levels of fatigue, nausea, etc. etc.

  • Debra Jean Kelly Greene

    Ten years ago I kept a pain journal for about three months. When I averaged the pain that I had been in, it was like 6.7, so nearly a seven. Needless to say I was not in great shape and could barely do the minimums required of a housekeeper and meet the needs of two active young children. The pain scale is somewhat helpful but there were times when the pain would spike so that it was off the scale. It is difficult for others to understand what we go through. I have had symptoms of FMS since I was 27 but did not understand why I hurt sometimes and other times I was okay. In 2000 the pain became unbearable. I am glad to say that I have learned coping skills that have helped the pain stay below 4 most of the time. I do zero prescriptions, I take a few supplements, and completely revamped my diet. I do not have as many flares as I used to. Once upon a time the pain seemed to be non-stop. It has been a blessing to get it so that it is manageable. I once was a recluse and now do and go as much as I please most of the time. I still have some bad days, but NOTHING like I did; A flare will last a few hours rather than a few days. Deb djkgc

  • Indialee12

    I agree – a 7 to them means you should be in the ER, not at the doctor’s office. To me a 7 means that I need to take a pain pill and try to sleep a bit because I was most likely up all night crying. I don’t go to the doctor as often as I should, and that is why I am in the shape I’m in. When my late husband was ill, I put my medical care on hold unless I was bleeding severely or could not breathe and was most likely contagious. Doctor’s just don’t get it as a whole.

  • Cindi

    I feel no one understands your pain level unless they themselves have gone through it or experiencing the same thing. I have sle and psoriatic arthritis. Not ONE family member understands. I try to always smile & do my best but when I can’t be the caregiver of all & jump to help, then I must be lazy or need to exersize more, etc.
    It’s very hurtful but I have learned through continues self reminders, that I have to say “NO” & walk away. I come first! Difficult lesson

  • Kandi

    I follow up my number with my other experience. Example : my pain is a 9 and I have had bone marrow extraction and 2 natural births. (bone marrow extraction much worse than child birth)

  • Janet

    I am fortunate to have a PCP who has severe issues himself. We’ve know each other for around 35 years so he “gets” me. Others who give me the pain chart (grr) and insist on a number, I tell them, ok my fall resulting in a broken lumbar vertebra was a 10. 17 hours of back labor on pitocin when I already had spinal arthritis was a 10, etc. 7 root canals plus a few extractions were about 6-7. They begin to catch on a bit. Same with my asthma. I didn’t consider it a 10 yrs ago when I went to my doc’s office, I was sent to the hospital, where they couldn’t believe what they heard in my lungs. I was in respiratory ICU when I was 20, this was not that bad for me.My fibro was diagnosed, oh, 35 or so years ago when it was not really accepted an a true medical disease. Then, it was a 10. I couldn’t move without pain. I was working in a nursing home at the time (clerical) and the director of nursing told me when I handed in my resignation, she was going to send me home soon–I was grey. As all of you have said that pain scale is useless unless you can use a qualifier. I wish all of you well.

  • fizzy281

    I was initially diagnosed with Fibromyalgia then Rheumatoid Arthritis and am fortunate to have a good consultant. I have morphine prescribed for use as needed but the scales are almost useless unless you use them as an individual patient guide. Our three or four would most likely be a healthy person’s seven or eight, and of course our pain varies according to what we are doing. You get so used to constant pain that you hardly notice the basic underlying pain of a “good” day. If I am resting and don’t make any sudden movement I could be a four but if I try to walk it will more likely be a seven interspersed with spasms of nine and up. Trying to explain to people is so often too akin to trying to knit fog to even be worth the attempt.

  • alumiere

    I have a strong dislike for the way doctors misuse the pain scale. These days my scale goes to 13; I can’t recalibrate it from the first time an ovarian cyst landed me in the ER thinking I had appendicitis (it was still the size of my fist on the ultrasound 2 days later). So now I have 13s which have gone well past nausea to dry heaves from pain so bad that I pull muscles in my ribcage. Doctors who hear what I say get it, but that’s rare.

  • meonthissite

    Doctors definitely don’t take you seriously if you describe a 10. I’ve done that before. I’ve had inflammation so bad that it basically makes it difficult to breathe or even sit down. It’s that bad but you can’t keep going to the hospital every minute if you have no insurance otherwise you’ll end up with crippling debt and these idiot doctors don’t understand that.

  • Crystallarel

    I just talked with my masseuse about this last week! She said to her 1-3 is mild and annoying pain, 4-6 is moderate pain, 7-10 is so severe you would change your behavior.

    A nurse posted on an on line discussion about this that doctors don’t take you seriously if you say you have above a 7 but can speak clearly. Then they’ve obviously never dealt with chronic pain! that changes your perspective? This info helps me communicate using their system, I also use as many descriptive words as possible.

  • Noona4kpop .

    I prefer to use descriptions to explain what I’m feeling. I was diagnosed with SLE and Fibromyalgia earlier this year. It has been a big adjustment to deal with, especially since I had just gone back to work as a nurse after 15 years at home with kids. So now I work 4-5 days a week, and there isn’t a single day that I don’t hurt somehow. Like previous commenters, there is a point where the pain begins to be unbearable and interferes with life. My doctors don’t want to give me anything worthwhile for those really bad days, which is very discouraging and frustrating. I’m just told to take some extra strength Tylenol. That’s like taking a tic tac for pain. I feel hopeless when my doctors, who are supposed to understand that SLE/fibromyalgia patients deal with a lot of pain just let me suffer. I have a long life of this to deal with and I feel like I’m already being treated like an addict when they’ve never even written me the first actual pain med prescription and only want to give steroid dose packs or suggest Tylenol. I’ve been searching for a local support groups but haven’t found any yet. I don’t know anyone with lupus and feel like no one understands what I’m going through. The “spoon theory” has been a great aide in helping family or some coworkers understand a little better, but I feel like some people I deal with just find it too much trouble to try to understand. They look at me funny or with cringing expressions when I describe that “my legs hurt so bad I feel like they are being crushed in a horrible car accident”, or the :pain just suddenly hits like I was shot in the ankle.” Or maybe I say that my skin feels like I’m standing in a fire. I’m hoping that these types of descriptions hit home. Best wishes to all my fellow “Spoonies”!

  • Canadian_Fibro_Guy

    What bothers me is the request of “between 1 and 10, 10 being the worst pain you’ve ever been in”. Well, I have been in some EXTREMELY painful times and how that relates to my ‘5’ or ‘6’ is completely different from anyone else’s. I tend to have to try to answer if I was a ‘typical’ person my age with no such issues in the past.

  • fibromyalgia patient

    I really find the scale not to be very helpful. For me, there is a level of pain that I can ignore some of the time – and there is the pain getting worse from there that takes over my being, and there’s no way to distract myself from it. Then I need meds to go on with my day in any reasonable fashion. I think the numbers and the faces mean different things to different people and aren’t very useful. In my mind, anything 5 and below is pain I can distract myself from or tolerate. Above that, it just intrudes more and more into my day and meds are worth their side effects.

  • Chani

    I use a lot of descriptive words, one neurologist told me it sounded like I was in a battle as I had a cleaver, pitchfork and razor blades used to describe one day. I had been reading Game of Thrones…

  • Jessica R. Abbit

    Everyday is a 4 to 8 for me but thankfully I live in the 4 range most of the time. I do not even try to explain my pain to people. Unless the person has Fibro, Lupus, etc they do not get it. Today I will be going out to a harvest festival & tomorrow I will spend in bed. That is how my life goes. I don’t complain though because I know people who live the 9 & 10 EVERY day. I love the “spoon theory”.