A continual problem during my kidney-related adventures (!) over the past nine months or so has been how to describe my pain level to doctors, nurses, etc. They all ask about the 1-10 scale of pain, from negligible to unbearable, as if it's a Gospel truth, and when I can't really pinpoint my pain level on that scale, they get impatient. Some even seem to wonder whether I'm malingering.
They just don't get how debilitating ongoing, permanent, chronic pain can be, or how it affects one's pain tolerance overall. Since suffering a disabling back injury in 2004, followed by two surgeries, a spinal fusion and permanent nerve damage, my pain level has been constant. On the 1-10 scale typically used, I'd say it's routinely at a 3-4 level, spiking to 5-6 on bad pain days (which come along every ten days to two weeks or so, almost on a schedule). However, medical personnel don't understand how one can cope with such a constant pain level. They regard it as impossible, and find it hard to believe that anyone can exist normally while living with it. Very few actually listen when I describe what it feels like.
I came across the post below (by someone using the moniker "invisiblefoxfire" on an unknown social media site; the post was copied to MeWe by someone else). It describes pretty accurately, from my perspective, what a pain scale should be for chronic pain sufferers. I know some of my readers have that problem, too, so I'm re-posting it here as a way for us to describe our situation to those who can't experience it for themselves.
Been telling my (young and abled) physiotherapist for years that I'm in pain all the time and when he asks me to tell him how bad something hurts from 1-10, I really don't know how to answer that. He'll say "Tell me if it hurts" and I have to say every time "You mean... in addition to how much it always hurts?" Anyway I love the guy, but he kept asking the same questions in the same way and not understanding why it was hard for me to answer.
Then I found this graphic ... and I showed it to him at an appointment. (Click the image for a larger, readable view.)
He started reading from the bottom to the top, reading each "normal" level followed by the "chronic" level next to it, and at first he was laughing. When he got to about 7/4 he stopped laughing and said "Okay well this is getting less entertaining and more concerning." He went completely silent for a moment after he finished, then turned to look at me with real concern in his eyes and asked me if this chart was really accurate. And when I said "Yeah, dude" and gave him a big goofy grin and a shrug, I saw something click for the first time.
I'll let other readers who endure chronic pain make their own comments, but as far as I'm concerned, yes, that chronic illness pain scale is accurate. I live daily at the 6/3 to 7/4 levels. I've gotten so used to background pain that I sometimes don't notice minor injuries, because their hurt is lost in the overall "noise", so to speak. On bad pain days, I endure the 8/5 and sometimes the 9/6 levels, popping pain pills to make myself livable-with (if you know what I mean). During the worst weeks of my kidney problems, with that pain added on top of what I normally endure, I was taking up to half a dozen (strong, prescription-level) painkillers every day. They made the pain bearable, but only just.
My physician commented that she'd put notes on my charts with other specialists, to warn them that because of long-standing chronic pain, my pain tolerance was much higher than their average patient, but many of them didn't appear to listen to her. I hope she sends that chart to them next time (yes, I'm forwarding this blog post to her). If your doctor or medical practitioner(s) find it hard to grasp how bad your pain levels are, you might want to print out that chart and show it to them. It's the best description I've yet found of how really severe, ongoing pain affects our lives.
(BTW, I'm not posting this to gain your sympathy, or brag about my pain tolerance. I'm doing so because I know from personal experience how hard it is for "normal" people to judge just how debilitating long-term chronic pain can be. I'd like to help other readers, who suffer from the same problem, explain it to their caregivers and loved ones. I hope this helps.)
Peter
40 comments:
That helps to understand what people in pain live with.
I'm fortunate to have no chronic issues, but I guess I have a high pain threshold. I've been prescribed prescription medication for pain when I have been injured. I never filled the scripts. The doctors just said oh, you have such an injury, here are meds. You are supposed to conform to whatever model is in their heads, not be different like people tend to be different.
My wife did the internet research to find out what her mother had that the doctors couldn't figure out. People talk about being your own health advocate but miss the point that the doctor is not, the nurses are not. It's rather scary, actually.
Good luck and God Bless.
This is why pain management specialists exist. Because other so-called professionals can't understand or deal with it.
Couple years back I landed in the ER begging for some help with severe abdominal pain from what the eventual CAT scan and ultrasound showed to be passing gall stones. They asked where on the 1-10 scale the pain was; I replied "10." They tried a particular concoction and asked again. I replied "12." More chemical wizardry that was ineffective and the question again, to which I replied "15, do I win a prize if it gets to 20?"
Doctors claim to "be interested in managing pain" because pain seriously impedes recovery, but when push comes to shove, unless it's their pain they ain't all that interested.
I have great respect for your position in life. I am lucky in that I didn't know about living with chronic pain until I had a run-in with sciatica. Moving about was painful, as was climbing into my truck which is only slightly elevated. Luckily, it lasted only two months until it disappeared. But it reminds me its still there and God gave me the wisdom to stop my work when I began feeling that familiar 'Take Care Buddy - Don't Push It !" twinge.
God Bless You Sir - I hope your symptoms are lessened in the near future.
FINALLY!!! A pictograph to show the "normals" what pain really can feel like.
Now do one for "a grumpy old man"!
The 0-10 pain scale is known to be worthless scientifically. Using experimental pain, ie giving you the same shock each time, the pain score is +/- 4 on a scale of 1-10. That is 1 SE not 2 SDs. Throw in the catch-22 of too low and you don't get taken seriously it is useless. We use it because it "seems scientific" and impresses clerks.
"Irritability guaranteed" yeah, pretty much.
Like Anonymous I went through a period of sciatica a few years back. The pain was intense the first couple weeks and only bearable when laying flat on my back. After that it gradually subsided until after six months it was gone. Mine was bad enough. I can only imagine what you go through.
Me, telling the PT that a 3 on the normal scale is actually good, and I wish I had more days like that.
Coming out of surgery and telling the doctor I was at a 6. She started working thru the 1-10 scale so I could give her the real answer, and I had to point out that normal was a 3-4, and they'd already had me flat on my back for an hour, which bumped the back pain up, and adding the incision pain bumped it some more.
It doesn't help that most pain meds do nothing for me. Darvocet leaves the pain alone, but I think it's funny when it hurts. Percocet leaves the pain alone, and now I'm annoyed that it hurts. Tramadol does nothing. Morphine is good, but I'm not allowed to walk around with a permanent morphine drip, so that's off the table. I won't try any of the drugs that will require weekly visits for a new hand-written scrip (because ADD and eff them if they don't want to make it easier to deal with pain instead of harder).
I push through, try not to overdo it (but I know I will) and hope that my Dragonette has it easier when the arthritis inevitably hits her.
And I laugh at pain scales.
That's an awesome chart but I doubt I could even get my providers to look at it.
I have arthritis in my hip. I've had this dilemma many times with Physical Therapists, doctors and nurses. How do I know when something specific is painful when I'm always in pain? "Does this hurt?" "Not any more than normal" isn't the answer they want to hear.
Thankfully, I'm pretty sure mine can be fixed when and if I ever convince them that I need a hip replacement. At least I hope I can be pain free after recovery...I've got a life to live, I don't have time to be gimpy.
Thank you. My back pain is chronic (displaced L5) but not nearly as bad as yours. I am seeing a new pain management doctor, after having given up for several years. He tried RF nerve ablation, which a co-worker had recommended to me since it worked for him. No joy. Then a steroid epidural, same lack of results. Just had a new MRI series done; the doctor noticed the last one was in 2015. Waiting for results. I don't expect anything positive from it, though.
I have a high threshold for pain, probably because I always seem to have a near constant low-level pain in my lower back. I always get a chuckle when I run across the meme found at the following link:
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiv_FmT0TVIvzvSNTXsS8o81D29frD2UymxHu7AIOKPth4_YQKwp-mtmc5tzGMFSEPURJJZjA5Tlm1qcJfyBEMNA_3n2gBWMH-1Dn8qn0-9qGVmWCRS56_HVojuFjHON7OAHlSe-I6IaSacGd5wJbxerERreTaO_Fx5JVEG3CQQrzrOZWnWgWZfx6UuFISZ/s724/277644185_1205552127122530_444698036493386298_n.jpg
I had an bad outbreak of cellulitis this year that I didn't feel any pain from, which totally freaked out the doctors since the pain level was supposed to be close to shingles. Nearly killed me, because I didn't notice the wound (back of the leg) until pus started dripping on the floor. Thought I had the flu, but it was the infection getting into the bloodstream.
Turns out I have some nerve damage from a serious shock years ago, so my pain tolerance for various parts of my body is all over the place according to the doctor that kept poking me in those various parts.
Now I have to scan myself like the scanners in a Cordwainer Smith story.
That chart is so frickin accurate. When it goes on long enough, it just feels like crippling, achey fatigue until it spikes a little above the 7/4 level. Thorn in flesh indeed.
Fortunately, I'm not a victim of chronic pain.
I do, apparently, have a high pain tolerance. For 35 years of marriage, I was led to believe I wasn't allowed to complain about pain under any circumstances, and that I was just being a baby and should just suck it up. Her pain, of course, was crucial and I should show no end of concern and sympathy.
After I finally left that marriage, and moved, and changed dentists, I had several procedures done. One time, the dentist did her best but couldn't deaden the nervers, and had to drill anyway. When it was over, she was impressed at just how much I could tolerate. That was when I realized that all my complaints in the past must have been real, not minor, after all.
Now that I've experienced gout, I have my own personal "10" on the pain scale to compare to. Plantar fasciitis is "8". I'm sure there are lots of higher levels of pain, but I don't want to experience them.
I'm 70 years old and I have my own occasional aches and twinges, but nothing I'm ready to complain about. But then, I'm used to complaints falling on deaf ears.
My sympathies to all of you who suffer daily.
I had spinal fusion surgery. The chronic pain prior was so bad, that immediately after the surgery, without the pain from prior to the surgery, I almost didn't even feel the pain from the massive assault on my body that was the surgery itself. After that went away, I almost couldn't believe the level of pain that was gone, and that I had lived with constantly for years.
I feel for anyone who lives through it.
wow.. love it. Im going to print that and put it in my wallet.
I have had this conversation multiple times with doctors and nurses this month and it leaves me just feeling helpless. I look at the lack of comprehension in their eyes and mostly just give up trying to communicate it to them. They mostly just don't feel it. The only time I feel a connection of understanding is relating to someone like peter that is dealing with their version of it.
35 years of injury to my lower back and knees.
15 years of joint inflammation in all my joints
Now when I have an issue with some new injury or pain and they ask, I will ask back.. umm.. you mean my overall pain or just the pain from the thing I'm here to see you about? My annual physical is even worse .. this is someone at the VA that's been my primary caregiver for a decade and I tell them all the things that hurt and that it's worse this year than last and I can only work 2 days a week now. But I can see it going in one ear and out the other. They hear and are ignorantly sympathetic but their isn't really any comprehension there.
My metric nowadays to notice I'm in pain is that I am getting grumpy with the people around me. I then wonder why am I so short tempered today and then I will focus and go.. oh.. yeah.. I'm really hurting today, I should take some pain killers.
Worse is that when in pain I withdraw from those around me as I don't want to be short with them, they don't deserve that, but better that than verbally and action wise being short with them. At the same time they don't deserve me checking out on them. One of my most effective pain killers exasperates this. Reading. My wife is so jealous of my reading, which is fair as it sucks up an overwhelming amount of time. But when I'm stressed and wanting to snap, and hurting so bad I want to holler, I can open a book and within 10 minutes I have calmed down, and I don't notice the pain so much. It is pushed to the background and fairly ignore able.
When you try to talk to people about it, you just flounder for words. You've spent so many years just existing with and ignoring the pain (now many pains), that describing it is hard especially on any relative scale. will they understand that my hunched and crooked posture isn't due to any issue but a result of my body subconsciously trying to get away from the pain. I barely realize I'm doing it most of the time much less remember to tell the doctor when I see him. The look on their face when you say "yeah today is pretty good its only a 3 or 4 on my scale today" which means I hurt and am tired because of the pain but I'm at least 30% functional compared to my 18 year old self and that's a good day. Or tell them I had 1 or 2 days a couple years ago that I didn't hurt and that it was amazing to feel that good and have energy again and that I felt so good that I couldn't help getting up and starting to do stuff I mostly cant do any more, but I had to stay in bed the next day because I over did it feeling so good.
pain sucks.
I got that line about chronic pain reducing pain tolerance from a workmen's comp final claims evaluator. I challenged him to prove it. I suggested cutting, burning or electric shock, his choice. He didn't pull out studies to support his claim and stopped that line.
I thought it was bull at the time and reading your personal hellscape I am even more sure now.
I have been in one level of another of constant pain for over sixty years from a serious back injury. Since then I have added carpal tunnel in both wrists, varying degrees of arthritis in both hands and a right knee that is bone on bone. Eighteen months ago I eliminated all carbohydrates from my diet and while the damage is still there, the pain is reduced by ninety plus percent. The dietary change ended the inflammation I suffered throughout my entire body.
I suggest to anyone skeptical to try it for thirty days, it doesn't cost anything and if it doesn't work for you, you are no worse off.
Yep, I'd say it's on the money... I'm normally at 3-4 because of my back issues.
Epidurals are dangerous pain doctors will hold a patient hostage to the high profit shots to obtain more traditional medications for pain. Depo-medrol says right on the box...not for spinal/cervical epidural use. Pain docs take the bottles out of the box. Crappy ethics and they know it. That informed consent form they shove under your nose 15 minutes before the proceedure; isn't!
Speaking as a nurse here, we know you are in pain, there just isn't anything much we can do about it without putting your life in jeopardy. While I am dumping max pain meds on you, I am surreptitiously counting your breathing rate. When it starts dropping to around 12 I start really watching. If it hits 8-10 breaths a minute I am thinking about pulling a dose of Narcan and keeping it handy 'just in case'. If it hits 8-10 a minute sustained I call the doctor on call to let him/her know we are maxed out. All you are getting for the next several hours is Tylenol or Ibuprofen. Other than more accurate dosages, we are about where they were in 1890 with Laudanum in terms of how well we can help with your pain. It's not that we don't care, it's that there is nothing more we can do except offer ice packs or a heating pad.
I am blessed that my chronic pain issues are *intermittent*. But yeah, they have shaped my perception of pain so completely that the normal pain scale is basically meaningless. I gave birth to my first child without any meds, held the baby on my chest and thought: "Well dang, I've had (pain episodes) that were worse than that. Why does everyone make such a big fuss about childbirth?"
Oh, right. It's because childbirth really *is* the most painful thing they've ever experienced. That's the top of their scale, the lucky bastards.
I had spontaneously invented a form of breath meditation by the time I was TWELVE, to deal with pain. Thirty years later, I'm *really* good at dissociating from body signals to remain functional...
But it is hard to adjust for normal expectations in a clinical setting. I broke my foot not long ago. I knew it was broken, I felt it break, took immediate action to prevent swelling (which worked!), but literally nobody believed me because I didn't *look* like I was in pain. I needed to wear a boot and stay off it for six weeks while it healed, not have everybody expecting me to do all the normal running about. So I went to the clinic for an X-ray. I had THREE different medical professionals talk to me after the xray and say some version of: "I was really surprised, I didn't expect... but there's the break, right there!" In other words: none of them had believed me.
If acclimating to pain makes it weird to get treatment for something as obvious and objectively verifiable as a broken bone... I can't imagine how frustrating that must be for less-verifiable sources of pain! God bless you.
This is why, at least in hospice, we started asking people what their "comfortable" level of pain is. Baseline pain matters a lot, and it's not always easy for people to put a number value to it.
Been living with chronic sinus headaches for, well, all my life. And have yet to get any doctor to give a heck about how bad the pain is. The pain gets so bad it actually changes my mood, turning me into a real rat-bastard. Fortunately a dose of ibuprophen and acetaminophen works, usually, sometimes.
And regular joint pain, foot pain, hand pain have always been a part of my life. Eh, it is what it is.
Now the wife? She's been going to pain management for over 20 years and yet other doctors still treat her like a drug-seeking patient when she has pain issues.
And I have to constantly remind her, when she tells the medical staff of what level her pain is, that to not use her normal scale but say it like she's not been in pain all the time.
Yeah . . . I've had some kind of pain or other since my brother dropped a trailer on me at age 11 on accident while playing hide-and-seek. I've had neck issues ever since that axle hit me, thankfully mostly mitigated by a physical therapy regimen in my teens.
Then there's the migraines. They're not as severe as when I was a teen. I would black out for hours in bed while my eyes wept from the extreme pressure behind them - and I simply couldn't function. Now they last longer, but with less intensity - probably what most people would consider a 8-9 on the 'regular person' pain scale, but which I rate at 2-5, Other people notice when I have a migraine before I do; I'm poor at judging my own physical condition.
Then, of course, there is the arthritis - that started a few years back, and is contingent on weather. I laugh about being 'The Amazing Weather Girl', but 90% of the time I predict rain up to 48 hours in advance because my fingers and toes ache. Thankfully, I live in high desert, so rain is a somewhat rare occurrence, but winters are rough.
Painkillers (non prescription) don't work on the migraines; I just throw them up, and that's worse than the pain in my opinion. The other pain I cope with, mostly, as I don't react well to medications.
If anything I'd say I tolerate acute pain better than I used to. 30 yr' chronic pain changes you. Pain you know is going to end is tolerable.
Five back operations starting Oct 2019; ending with a 4 disc fusion in April last year. Two right foot operations and rotator cuff operations on each shoulder in the middle of the back operations. Most were done during the plandemic. Your chart is spot on. I'm at 7/4 today. Yeah, it hurts all the time.
Thank you! This is a great help to explain to the masses...
I've been beating myself up forever, bicycle crashes, off road crashes, on road crashes, ship yards, tree service, (addicted to G forces) 2 knee replacements, 2 blown elbows, 5 fused cervical vertebra, 2 herniated discs and so many lesser injuries (shit loads of stitches) , I can't remember. Fortunately, I'm still on the left scale, 3-4, on bad days, 6-7. Also fortunately, the VA gives me hydrocodone (Vicodin) works as advertised, except no euphoria, dizzy, distraction, loss of coordination (sometimes a little euphoria would be appreciated). At 73, I have no room to complain. still mobile and active.
My poor wife on the other hand is fully on the right chart. She's tougher than me by a good margin. Percoset just takes a layer of pain off. Same lack of understanding at Pain Management. We're printing out this chart, thanks for a useful tool.
Beans, I had sinus problems for most of my adult life. Pain meds and lots of decongestants, with multiple infections year round. Mostly on one side. Turned out to be caused by a molar with roots that had penetrated the sinus cavity. Problems mostly disappeared after the extraction. Hard for a dentist to see this with an x-ray, unfortunately.
I had a two level fusion in lower back in 2011. It solved the sciatic pain but left me with nerve pain that is felt in my feet. I have to stay away from serious narcotics as they make me too abrasive for my family to deal with. Gabapentin helped initially but increasing doses over time can no longer increase because kidney function is down and that specialist wants me to reduce it. When I was in hospital in May with a stroke and a couple other problems including the kidney problem one of the doctors said something about the 1-10 scale didn’t mean much because it was the patient’s opinion. So I said my pain scale had 3 or 4 was tolerable when I was awake and moving but I can’t sleep at 4 and when I hurt bad enough to start puking it was at 7. They asked what 10 was and I said that was where I was at post surgery when they stopped the morphine!
Between a protruding disc and arthritis just about everywhere, 4/1 is normal. 2 or 3 times a year I'll wake up and realize that nothing hurts. It's magical. It only lasts 10 or 15 minutes, but it's a window into the world of healthy people. Today is a 5/2.
Don't dismiss yoga or tai chi as magical. Flexibility and breath control can knock pain levels down a notch or two. If you're a swimmer (I'm not) it can help too.
6 open spine surgeries (13 fused vertebrae), 9" colon & ileocecal valve removal (open), infected gall bladder removal (lapro), level ranges 3-7 daily. On schedule stuff since 2003. NOBODY in the supposed healing profession listens to pain levels. They have their own agenda. Well, except my pain med doc, but he's in the business of generating and keeping patients. I have 9 heat/massage devices and some work, some don't, but none for more that 20 minutes. This shit sucks.
One other thing. I'm not, but my wife is Roman Catholic. If somebody doesn't have her canonized as a saint after we both die they are scum. She couldn't possibly have imagined the true meaning of "for better or worse" when we married in 1968 (today, 9/14, as a matter of fact). She damned sure didn't sign on for living with this version of me, but she is beyond all expectations in support in spite of me every day.
You seem to have hit a nerve with this one.
Pain is a daily for me. Has been since 1996. Some days better, some days worse. That chart is fantastic mind you... the problem is the VA has a 'one size fits all' approach to pain management. Give us all the 'dope' we can handle, and call it a day.
Took me -8 years- to FINALLY get on an Acupuncture Appointment. Not sure if it actually works or not, but the scheduling is so chaotic, I missed my last appt, and now they say it'll be 2x months before I can get in again. What I NEED is a hot tub... had a home-built one in Iraq that took care of business quite well on the daily, but the acquiring/building and whatnot couldn't be done here these days, and the financials to get a tub myself aren't available.
You'd think that subsidizing something like that -might- be able to be done right? I mean after all they're shelling out megabux to illegals... why can't they come off with $5k for a disabled vet?
Oh yeah!
We don't voat the way they want us to!
It's been illuminating seeing all the comments, almost a validation. It's not easy living with the pain and and long term affects of mood change, physiological effects from the pain, energy loss, etc..
One of the hardest things is day to day impacts and acceptance from those around you. My children at this moment in time are the only ones that give unconditional acceptance and sympathy and love. I will have to go lay down as I can't keep standing and before long a 10 or 13 year old will show up and lay across my chest to give me a hug and an I love you. As I lay there wanting to cry from the pain of their weight laying across my chest, all I can do is hold them and say I love you back.
With adults we have expectations of responsibility and duty. My wife that has dealt with her own pain and medical issues since the age of 21 with 2 major strokes and open heart surgery that year. Still gets upset with me as I am not fulfilling my role as husband and father and provider really well. She understands in her head as she also deals with physical issues and pain, but emotionally it's hard. She see's me 10 times a day go lay down and read for 20 or 30 minutes before getting back up and doing stuff. I can't do all the repairs the house needs, I have to take a couple breaks while cooking meals and maybe three between starting and finishing cleaning the kitchen. She doesn't say anything as I can tell she knows, but I can also tell she is frustrated both with herself over her issues and me with mine. Because stuff just isn't getting done as it needs to be. I have to focus on my knowledge of her issues and chronic tiredness that needs 10+ hours of sleep a day since the strokes; that she doesn't get and that leaves her chronically stressed and sleep deprived.
It really brings to mind what a clueless asshole I was when younger and didn't have the experience of these types of issues. Not saying I behaved badly or treated anyone without care, however you just don't get it unless you have lived it. It just makes me wish I could go back and be more caring and acknowledging of the issues of my elders and some friends back then.
I give a lot of leeway for peoples perceptions because if I who have lived this for so many years and really understand, can still emotionally get frustrated with those around me also dealing with their issues, how can I expect those who haven't to even have a clue.
Reading all these comment has been helpful. I don't feel so alone in some ways. For all of you (many more than I was expecting), I care and am sympathetic to your plights, though there isn't enough of me left to give meaningful real world help, I can give at least sympathy and empathy that there is someone here that understands and wishes you well or at least better.
Two ibuprofen and half a tylenol. Nothing radical or unsafe but works well. Apparently a well known secret in emergency rooms.
Post a Comment