My Nemesis: The Pain Scale

My Nemesis: The Pain Scale

Every month I visit my pain management doctor and every month I go through the same routine.

  • Arrive and check in
  • Wait between 2-3 hours to be seen.

When my name is called, I go to the back with one of the friendly nurses, who takes my blood pressure and weight and then asks: “What is your pain level like today?” This is when everything comes to a screeching halt and where I start sweating and my anxiety shoots from a 3 to about a 25. In reality, the worry begins first thing in the morning as I perform a general assessment of how I am feeling. Here is where the trouble lies, for me.

Liza Zoellick

When I first began seeing my doctor, I thought it was going to be a place where they treated all of my pain. This was probably some naiveté on my part, expecting a kind of miracle cure. What I learned very quickly that first appointment, was that he would treat the pain like a triage, starting with what was worst. It’s been almost three years now, and he’s still treating just one part of the problem. I’m not sure if all pain doctors are the same, but I can see the logic in treating everything piecemeal. However, since my first appointment with him I’ve also learned about the fibromyalgia, rheumatoid arthritis and ankylosing spondylitis. With the advent of new diagnoses, I would think there would be different treatment offered, yet we’re still doing the same thing and my options are limited. Between random seizures that make driving unsafe and relying on family and friends to get me around, I need a doctor that is close. Let’s not forget the usual length of the appointments, which means they need to have a few hours to kill.

But back to the pain scale and my anxiety. As you can see from the pain scale (which was recently updated a few months ago) it’s very detailed. One of the more popular versions that I remember was the happy faces that gradually became sadder and sadder until they look miserable. This one is so detailed that even though I don’t have the pain scale in my face when they ask me, I have it in the back of my mind and all I can think of is what if my “7” sounds like I’m lying? What if they think I want more drugs? The very nature of the pain scale, in my opinion, is subjective. I’m the one experiencing the pain, not you, and so when presented with this scale it feels like you are trying to fit my pain into your version of what you think it should be. So, if I say I am at an “8”, and I am not panting out my words because of the pain, then what? I’m lying? Every time I go, this is the conversation I have in my head during the 20-minute car ride. But I don’t get truly stressed until I am sitting there and she asks me. It feels like a right or wrong answer to me and this couldn’t be further from that.

Pain is already a distressing factor in my daily life. I wake up with it, I do my daily chores with it, write with it, make supper with it, spend time with my family with it and go to sleep with it. Every facet of my daily life includes pain. I feel that chronic pain should be treated differently than emergency room type pain. What I mean is, you fell and broke your arm or you slipped on the stairs and twist your ankle. This is a different kind of pain that will go away once the problem is fixed. It might have a span of a few weeks until healed and then you go about your normal routine. Chronic pain is not like this. The most you can hope for is that it can be managed, which means that you are still in pain, but hopefully less so with medicine. An added irritation, is the focus on only one source of the pain, never asking me anything beyond that. I feel as though my doctor has this idea tucked into his brain, that if he solves the pain, he has been treating me for everything else will magically align itself and I won’t be in pain.

The pain scale is my nemesis. I’ve only been to the emergency room once for pain unassociated with migraine. Though, I will say, that in my experience, emergency room staff do not question migraine pain in the same way they do chronic pain. Which is why I’ve only been seen in the ER once for out-of-control pain, and even that was associated with surgery. I don’t think they have the same pain scale as above, but it doesn’t matter. I have it burned into my brain, so that I now question myself and the severity of my own pain, much more than I think I should. My pain is not the same as someone else with chronic pain and their pain is not like the next person with chronic pain, and so forth and so on. We each experience pain in a very intimate and personal way and I think that how we manage to express it to a doctor or nurse, should be honored, not de-constructed to fit within the confines of the pain scale.

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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S. Dixon

Oh my goodness, the stupid pain scale !! It makes no difference what my pain level is, the clinic I use doesn’t adjust my medication. Pain is very individual. To me an 8 is post surgery when the medication has worn off, natural child birth ect. Pain that I’ve personally experienced is how I determine what number I say. One visit I was extremely uncomfortable and could barely function and was almost in tears, I answered that my pain was at a 7, and I was told that people can function and live with a 7 on a continual basis. Really?!!?? I can’t !!! If they are offering no additional help, what possible difference does my answer make?

Michael Lloyd

I am so sad and completely understand if you are as exhausted with the dilemma as I am. For ten years now, have dealt with Multiple Sclerosis and the primary progressive type that I have is truly progressive! My current physician made a comment to me during my last visit that has entirely taken all hope of continuing to hope 🙏
for anyone real relief from this agony. I said to her that I thought the Hippocratic oath should be considered instead to be “the hypocritical oath” and she stated that she was able also to end my ability to receive “ANY FUTURE PAIN MANAGEMENT”…
From this occasion have decided to try any state relocation to live until a physician in that state will assist me in dying with what limited amount of dignity that I have left.
Mayland will hopefully vote on the issue soon and rule in favour of medically assisted suicide, because many m/s patients feel as I do that this is not any way to live in any way of rational thinking.

Thank you very much for sharing this story Liza – we’ve shared it with our thousands of users as well.

Communicating what you’re feeling to your doctors is fraught with challenges: the guilt, worry about how you’ll be perceived, the lack of validation, inaccurate (unintentional) reporting since it’s been so long since your last visit!

It’s precisely stories such as yours inspired us to create Manage My Pain for iOS or Android (https://www.managinglife.com). It takes less than a minute a day to record what you’re feeling, and then you can generate a one-page report intended to improve communication with your doctors during clinical visit. Any similar pain tracking app or tool is strongly recommended so that you can get the care you need.

Keep battling on – your words are very helpful for many others who are facing the same things.

I want to say thank you to everyone who responded to this and who it resonated with. It’s so important for us to talk about it and hear from others who’ve had similar and different experiences. I try to reply to everyone but the last few days haven’t been so great. Peace and love and low pain days!

Tanja Johnson

I’m a provider. Gathering your subjective and objective information is a standard of care. The pain scale is used to help providers know and act upon the severity of pain. See if you can look at it this way – In chronic pain mangement, we suggest to patients to take tylenol, ASA, IBP, non opioids for pain <3; for pain 4 – 6 take half tablet opioid as prescribed with other non-opioid options; for pain 6 to 8 take full tablet opioid as prescribed with non-opioid options; pain 9 to 10 take medications as prescribed, notify pain provider of pain pattern changes and consider hospital care for pain evaluation as needed. Chronic manageable pain is far different than acute unmanageable pain which may indicate an underlying medical problem. And yes, an established chronic pain patient can have a score of 9 and 10 and not need to go to the hospital because it is their known pain pattern. Hope this helps. PS. I agree with another response whereby they mentioned to find another provider if you feel judged or poorly supported. Blessings!

Kevin

I understand that we chronic pain patients think a whole lot about our pain. But perhaps you are over thinking this. When they ask your pain level, consider pausing for a moment… assess what your overall, average pain is at, and then give them an honest number. Then forget about it. This isn’t an SAT test. They likely give it cursory thought, and when the doctor sees you I’d be surprised if he or she doesn’t say, as my doctor does, “So how are you doing?” And that’s your opportunity to provide a more nuanced response.

Only once did a physician (a specialist I was seeing for a second opinion) question me when I told him my pain was a 7 – 8. He said your sitting here talking to me and I wouldn’t guess that you were in that much pain. And he was correct in how I appeared, and I thought it a reasonable question. I told him that if he had a bad headache, say a 7 – 8 level headache, couldn’t he up his game, and walk in here and see me, and act relatively normal for the 20 minutes he spent with me? I told him that my pain was literally incessant, only varying in intensity, and that I can’t walk around with my head in my hands. And he got it.

Afterwards, though, my wife said that it wouldn’t hurt if I maybe shared a little, visibly, that I was indeed in pain, which I thought was a good suggestion. Doing so is not an act. Sucking it up and acting normal in spite of my pain is more of an act. So if my pain is at a level 3 – 4, then I act normally. If it’s a 7 – 9, I share my pain a little. No drama… just through my words, and a little of the mannerisms that I would normally be exhibiting. Oh, and I never inflate my pain score, so that I have complete confidence in my visit.

I know that we are all different in how we handle our pain, and these are just some suggestions. Use them, or completely discard them.

Lisa Hess

What I don’t like about these pain charts is the question below it “what is your CURRENT pain level. I think there should be two charts. One for current pain level after taking meds and the other to be “What was your pain when you woke up.” Two totally different ideologies that would show the doctor(s) how much the medication prescribed is working. I’m a chronic pain patient and have an amazing relationship with my PMD. He’s seen me at my worst still a 9 after meds because when my pain is that high, nothing works and he’s rarely seen me at a 5 after meds. The opioids I am prescribed are my only option since I’ve had over 25 failed procedures, several spine surgeries and several chronic illnesses that cause chronic pain. He told me this week that unfortunately I am left to suffer at the so called “mandated 90MME guidelines.” I need this medication for the rest of my life. We are waiting for the CDC to do the right thing and remove the guidelines so I can have my quality of life back. And, as a Medicare patient, my anxiety is when I go to the pharmacy. Pharmacists have now taken on the role as the “watchdogs” and can change or deny any opioid prescription if they want to. So that anxiety can continue for several days until I know Medicare approved my prescriptions. This anxiety affects everything I do and everyone I love because I become intolerable due to the anxiety until I get the txt my prescriptions are ready, then I can breathe again and calm down. The one medication (as mentioned in another comment) I can’t get is the Valium I use so I can sleep through the night and won’t wake up every time I move. Anyone on Opioids is no longer allowed to have their Xanax or any type of benzodiazepine medication. That my friends is where this treatment is unconstitutional and can cause people to try suicide and possibly succeed. Why the government never thought about chronic pain and anxiety as two separate entities is insanity.

Soooooo, I’ve been going pain clinics for 19 years now. I’ve been going about it all wrong. Although the past 6 months or so, my pain has increased. I just bet they think I want more pain meds. At this point I sure would appreciate it. But Liza I want to thank you for this. I assume I’ve been going by a old chart. I’ve been putting 10 because I spend most of my time lately in bed and crying. It’s overwhelmingly worse. Making me depressed which I’ve learned last week telling them I’m depressed and have anxiety is a no, no. I’ve taken a screenshot of this chart and will be discussing this with the NP, that I think hates me. I really want some relief, and still praying that I don’t wake up.

John Steward

Thank you for this. “I though it was only me” is cliched, but apt in this case.

Jill

I always preface my pain level answer with the question ” before I took my Norco to come here or right now?” I’ll say like it was a 7 when I woke up, but of course I needed the pill to be able to get up and get here, so now its about a 4. I try to convey how much the meds help. And I try to vary my answer sometimes saying it’s especially bad today I don’t know why. I’d say maybe a 6. So they know the pain fluctuates. I don’t believe the doctor focuses so much on these numbers since it’s still a subjective measure and I sure wouldn’t have such extreme anxiety over it. At this stage of pain management, you just need to adjust to whatever you can get for relief, not ask for more meds or higher dosages, and be compliant. This “crisis” has been in place for too many years and I don’t believe we’ll ever get back what we had. Of course it’s horrible and has reduced my quality of life to the extent I barely have any. I don’t understand this inhumane treatment of the sick, but if you say what is the truth as in” it’s a 9 or a 10 and never stops, jerk” it isn’t in your best interest. 🙂

xencindy

I’ve always had trouble with the pain scale, too. For me, there are two types of pain: Can I function? Or is the pain so severe I can’t push it to the background and do what I need to do? I actually like the pain scale up above, it gives me a little better idea of what different numbers might mean. It also makes me realize I tend to underestimate my pain level most of the time. Thankfully, my PainDoc has never asked for a numeric rating of pain, and he understands that different parts of me might hurt at different levels on a given day.

Gigi

Hi, my problem is I have chronic pain and swelling of my ankle due to an accident. I have had two surgeries and am still left with pain sometimes so debilitating I cannot put weight on my foot. In the doctor prescribing different medications, we have leaned that I cannot take meds manufactured outside of the United States as I have an adverse reaction. Once so bad I now carry an Epi pen. With more and more medications coming from other countries and some that are no longer made in America that finding something that works for me has been impossible, After 4 years of treatment so far I can only take Duexis which is Ibuprofen and famotidine, This is better than nothing but no real help for relief. I am tired of not being able to do what I once found easy and when I push myself to do normal things I pay for it the next week with pain beyond belief. Sleeping more that 4 hours is a luxury that I rarely get to expeience. And people just do not understand. In fact I don’t talk about it much because they just don’t get it. Living with pain 24/7 when you otherwise look healthy is my own private hell.

BoardCertifiedPainDoc

I am an interventional pain medicine specialist. You are right, pain is subjective. I was taught that from day one. The IASP essentially defines it that way: (https://www.iasp-pain.org/Education/Content.aspx?ItemNumber=1698#Pain). The main way that the 0-10 “numeric rating scale” pain score is useful to me when I see a patient is to compare the patient to themselves at different points in time, for example to determine whether a particular treatment is helping or if they’re having a particularly bad day. So I don’t care how a patient interprets the pain scale, as long as they remain self-consistent. And most patients are pretty consistent. I’ve never seen that pain scale before so it’s not some universal new standard. It just looks like someone’s attempt to get certain patients not to inflate their pain score to 10/10 all the time by providing some suggested “anchoring points” along the scale. I understand that sentiment, but I stopped trying to judge whether someone is really in 10/10 pain a long time ago because you can’t. Instead, when I want to further understand how an individual patient utilizes the pain scale or to establish therapy goals I ask them, “What would be the highest tolerable pain level to you, if I could only get it down to that number?” I call it a person’s Maximum Tolerable Pain Level (MTPL). I’ve had patients say they’d be happy if I could get their pain down to a 7! So getting them from a 10 to a 7 doesn’t seem like such an unreasonable expectation after all. For others it might be a 2. Essentially, instead of telling patients how to use the pain scale by providing anchoring points and hoping they all conform, I just ask each individual how they use it by finding out their one most important anchoring point. My advice: don’t overthink your pain level. It’s better if you just “gestalt” what your pain intensity is and go with it. It’s just one parameter among many. It should be your doctor’s job to tease the details apart.

Theresa

The problem with pain these days is the government!!!!!! They’ve put so much stringent pressure on all areas it disgusts me. Like injection one of the idiots with some scale 10 level for 5 minutes and see how they can pass judgement then. They’ve taken and now control even the pain in butt insurance biz to a whole new mess!! They THINK they Know!!!! Talk we know to a suffering migraine! Or a 24/7 chronic pain sufferers like me!! Let’s see how difficult it is to get treatment then . Jerks!!! Even appointment for a dr. Is drawn out now. Alllll cause other people have done stuff others don’t. Punish the already punished some more is the to date mind set.

I experience the same problems as you stated with how you communicate to doctor’s about your pain level. I’m just extremely grateful there is a standard and a way of at least monitoring pain with a scale. There never used to be one and it made communication with doctor’s even more difficult. At least with a pain scale, they have it in your chart, so they can see patterns and consistency with your pain, so you have documentation. It’s one step closer to helping pain patients, although it can be daunting and intimidating. I have tried communicating my pain levels to nurses and doctor’s in the past and it was more irritating trying to communicate with them about the sincere and accurate levels of pain I was in. Now, I say a number and it’s like they understand better instantly. It’s a clinical thing.
With regards to all of us who have “pro ven” to be responsible to our physicians about taking meds, remember it’s no longer about that. The doctor’s are experiencing a huge amount of threat and pressure, so most of the time, they hesitate to prescribe based on policy changes, or how many of their friends received letters threatening their practice. It’s a hit or miss and if it’s a miss, just move on. You will go crazy trying to persuade a doctor that is ultimately going to protect themselves and their practice over providing us pain relief. I’m just saying, don’t waste your energy trying to prove yourself, or taking it personally. I refuse to allow another doctor’s visit to ever bring on the pain they have in the past because I’ve learned it’s not about me. It’s about them, or messed up policies. I won’t change that by getting all worked up. If I feel un-validated and even abused, I report the doctors, or write reviews on them, so to help other people. If more people wrote bad reviews about doctor’s, they wouldn’t have the flow of patients and that will affect their business as well, so try that.

Robert

This author has hit upon what is surely a very common dilemma for most if not all pain patients and it has been addressed in many books on chronic pain. Even one of my most trusted doctors told me that I could not possibly be at a 10 since that rating is reserved for people with limbs torn from their body and the like. I was incredulous and asked him how he would rate a pain that made me seriously considering ending my life to escape it. I think I might actually have made him rethink his observation. Sure, I may well have had episodes of acute pain that made me scream and jump up and down but that pain subsided as quickly as it’s onset. But chronic pain has the more sinister and insidious agony of piling on over time and growing importance in its impact on your physical and mental health. If your pain makers you suffer most of the time and you think about it almost constantly I would say that it is devastating your life and as a result is probably the worst pain you have ever experienced. If this is your situation then go with the ten and stick to your guns and if questioned explain why you rate your pain a 10 (it’s the worst pain you have ever experienced).

Tim L Dean

Dear Lisa,
I, too, deal with chronic pain from degenerative disc disease. I’ve been on the same meds for almost 19 years now. 3 years back the dr came in the room and announced that the muscle relaxer that i had been prescribed for over 15 years i would no longer be getting due to new FDA rules. Also the med i had been getting for anxiety i could no longer get due to the same ruling from the FDA. As long as I’m prescribed pain meds i can no longer be prescribed those 2 meds because of the “opioid crisis”.
I can certainly understand being safe. However, i had at least 15 years of responsible usage of my prescriptions and furthermore the vast majority of the “opioid overdoses” were from heroin (which is not prescribed and certainly not in the injectable form) and fentanyl. Neither of which was i using in any way, shape or form.
Unless a person actually has to deal with chronic pain, they simply have no flipping clue as to what we deal with. Chronic pain invades your life in ways they can not fathom. It not only physically hurts, eventually the pain affects you mentally, emotionally and can even cause spiritual damage. After being a world traveling entertainer for many years, eventually the pain (along with new FDA rules on which meds you can or can’t have) i eventually became a shut in. I know that my wife didn’t sign up to be a shut in or even live with one, but the amount of pain i experience simply can’t be disguised. It shows on my face. It shows in my posture. It shows in the way that i walk or move.
I have no desire for “getting high” on drugs. Alcohol is cheap and pot is plentiful. My only desire is to (as you stated) manage the pain. Here in the Atlanta area, the doctors that I have encountered simply won’t write many of the drugs that could actually give some relief because of new regulations and the “liability” factor. I mean, my God, I’ve been on meds for over 18 years now. I believe I’ve proven myself responsible with the meds.
Do you experience this?

Cheri Nappi

I agree 100%! But consider yourselves lucky that at least your Drs. want to help you in some way as thanks to this epidemic I’ve been dealing with chronic pain for about 8 yrs now with no help. Even though my heart Dr has told them my heart has become over stressed to the point where I need heart meds to try preventing a heart attack from the stress the pain has put on my heart all these years. I am forced to spend my life in bed as I have prostetic hips that are failing so when I go to the Dr it doesn’t matter if I’m at a 9 or a 6 that day, the pain scale doesn’t matter because the Dr doesn’t either believe me or is to scared to medicate me. Sadly this is happening to many people with chronic pain every day. Pain scale only help if the Drs care the way they should and it’s been years now since I’ve come across one that follows the oath they take and help instead of harm.

Me Chryteen please do not give up. Try to find another doctor that will not dismiss your pain. I know the “opiod crisis” has made finding one a whole lot harder but they are out there. I’m neither Democrat nor Republican and I’m really not political at all but Democrats are completely wrong about the “opiod crisis.” There needs to be more focus on the “Tylenol crisis” as acetaminophen is responsible for more deaths each year than opiods. My wife died at age 29 from liver failure as a result of toxic levels of acetaminophen. After being diagnosed with cervical cancer and running out of her pain medicine was turned away from the emergency room in our small town because of conduct believed to be drug seeking. Please hang in there Chrystten

I called DEA agents and asked them and they all said that the media is wrong how they have handled the opiate crisis and they are after the ones that are way over doing it and the CDC has scared doctors.There are insurance companies and others involved in putting out misinformation so they can save money.With all we have left fight for you and others later.

Believe me I can relate! I feel like I go now to see a doctor to get worse cause they are tapering me down instead to get help.I never wanted on this stuff and have been fighting it for years.The doctor I had decided to go into another career and I had to find someone else.Please do not give up any of you and fight back.Find out what the law actually says in each state of how much you can have and you will probably be surprised? A lot of what they have done to us is really about money and there is 40 of us a day committing suicide.Get on line and educate your selves.

Dave

I like your story Liza and i think we can all relate to it.
I am sick and tired of all of us being treated like addicts and we are going to over dose, that is so much farther from the truth, the people that are overdosing are Meth Heroin, fentanyl and some one that breaks there leg and becomes addicted to pain med’s, not the pain med’s that chronic pain people have to take on an hour by hour day by day basis. I can not say this enough there needs to be a separation from someone that breaks there leg and becomes addicted to pain med’s and someone that is dealing with chronic pain all the time.

F.S.T.

Of course I had to laugh at the sheer ridiculousness of the pain scale that no one actually refers to. The only reason it is there is to make the clinic meet compliance standards! It’s certainly not for our benefit. Also what is beyond my mental grasp is my clinic takes my BP every visit. Why in the world do they do this, if they don’t address it?!? My diastolic (bottom number) BP is never under three digits. In fact, the LOWEST these numbers have been is 106! These awful blood pressure readings started back in 2012 when the clinics went absolutely bonkers to reduce our pain meds. It’s sad, really. When my pain was adequately controlled, my BP meds, my Fibromyalgia meds, and my antidepressants were all unnecessary. But the dingbats who cried “foul” and closed the pain relief door on us could not see the forest for the trees. God help us all.

Jennifer

So real! Living with chronic pain takes someone else’s 7 and turns it into a 3. It’s just something you have to live with. I hate feeling like I’m getting the side eye asking for the meds I need. It’s (reassuring?) knowing I’m not the only one who deals with this.

Barb Taylor

You said it all. I used to think of course I’m not an 8 or higher. I’ve been sitting on my but for 2 hours just to get my pain meds every month. And they are sincere caring? I get more empathy from the guy next to me. I have all kinds of horrible injuries and diseasesee but the pain Dr acts like I’m gonna get better. The government seems to think we are all having fun taking drugs and I’m gonna overdose. Ya, maybe if I take 4x my dose. It’s chronic pain because it is damaged nerves and more that can’t get healed. So quit treating us like we are just addicts. It’s no fun. I still have pain it just takes the edge off. So at least understand or get a different job.

Old goat it is not true that if you go to a rheumatologist or neurologist or a podiatrist that they will treat your pain separately because I have seen all those Physicians practices that you mentioned and they all tell me that they will be willing to set me up with pain management. Each practice can only do injections in certain places that they are trained for when it out of their scope or they just don’t do those injections or the insurance will not reimburse them for the cost of injections or repeated injections they’d suggest sending person to a pain clinic. I know this because I’ve seen all these Physicians and they all want to send me to pain clinic. Plus it is not safe to go to multiple providers and have injections done because you’re increasing your risk for bleeding in the stomach, osteopenia, diverticulitis, causes blood sugar increase, DVT just a whole host of additional problems. Even can drive you insane. Is best to have one provider do your injections as to keep the count of how many you have per year.

Before so-called opiate crisis / not, when I used to be in a pain clinic at that time only had a 30 minute wait & was out within an hour. When injections was done it didn’t take more than an hour & 1/2 that’s bc I was put under anesthesia. When they closed the next place I went to had to wait on my first visit 7 hours to be seen. I was the first person there & the last person that left. If I wasn’t desperate I would have walked out. The rest appt wait time 2 hrs to 2.5 hrs before being seen for 15 min office visit.
I did leave there but it’s no better anywhere else. 2nd place same time frame. Both these places their paperwork States put only the place that bothers you the worst. I put that but also put my other pain areas as well. That backfired. I was told that I had too complex of pain issues that they could not deal with. They were looking for one source only to treat. What ! What is pain management supposed to mean? 2nd PM transcribed all my medical issues that I said I had as not having. I pointed this out they said they would correct it. guess they were embarrassed by their own mistakes because I received a letter in the mail for dismissal. Thought I was being helpful since the DEA might look at records. I think my medical issues should be corrected for safety reasons.
I hate the Pain Scale bc it causes anxiety for the same reasons that you said Liz. I put a 9 & that was w/ having a migraine along with spinal problems that show up on an MRI & fibro. Was told just having fibro alone is too high pain level to be treated w/ pain meds not including all the other herniated disc & radiculopathy.
basically they were ignoring the herniation & the radiculopathy ,pinched nerves stating just bc I had fibro I wasn’t worth treating bc they couldn’t get my pain level down to reasonable number. I go w/o treatment because I can’t meet a number they have in their heads.

Maureen M.

Hi Liza, as always, such an excellent post! Thank you and for speaking my very own feelings on the Pain Scale…which I despise. Pain can change as I sit in the waiting room, or when I get home from the office and hurt much more from sitting there too long (although I bring 2 pillows and pace in the hallway!
Pain changes with every activity, every day!
I just always put a 7, unless I’m worse and then I put an 8-9. A and, it is never ev n questioned.
But…I’ve never seen that new updated scale you posted above. Geez! What will they think of next?! Haha!
My doc never ever asks me a single question about my pain. And when I attempt to explain any negative changes he just hands me my script and says ‘Have a nice day, see you next month’ and walks away. Soooo discouraging and leaves me feeling defeated every single month!
But, I need my medication sooo I can’t say a word. It’s not like the old days when our doctors truly cared. Keep strong warrior! Maureen

CDC believes there should not be a way to rate pain.

Krista Mitchell

My life EXACTLY

Chrysteen Anderson

I don’t expect to be around in a couple months. After 50 years of back pain,Fibromyalgia, IBS, leaky gut, migraines, TMJ, breaking both hands and feet multiple times, I have been cut off from all hydrocodone. I have been sleep deprived for 50 years, can’t chew food properly, have severely deformed feet, etc. I am an old farm wife who spent a lifetime getting bucked off horses and run over by livestock. My back, hips and knees are bad. The last time I left the farm for fun was 2012 for a dog walk. The last couple years have been really bad. My neighbors do my shopping. The only time I leave the house is for doctor appointments to get the hydrocodone. Most of the time I am afraid to take a shower and drive. It is hard to get out of bed and takes an hour to get dressed and feed my dog. Sometimes I sleep in my clothes because I can’t take them off. I live alone on Open Livestock Range in the mountains, so I can’t drive to civilization without getting a migraine and my sciatica getting bad. Every night I use a hot pad, ice packs, pain patches and lately Anbesol for my aching teeth, I guess from grinding my teeth in pain and frustration over chores undone. Today my doctor told me my problem is I should have a positive attitude. My doctor is worried about cholesterol and high blood pressure, as I research the best way to euthanize people. I have bouts of unbearable agony and don’t want to be left without an exit strategy.
When I found out I could not get pain relief my first reaction was that I was going to die. Now I am afraid to live.

Laura

I completely agree about the pain scale being subjective, frustrating, and even intimidating. Sometimes you have to find the humor in it all. Here is a genius, hilariously funny rewriting of the pain scale from Hyperbole and a Half. It’s not easy finding humor with regard to pain but this one has nailed it I think. Enjoy!

http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

Debbie Cusyer

Hello, Great analysis! I had 2 major back surgeries in 2003/2004 for 2 ruptured discs (L4/L5). Hardware installed for fusion, then removed 9 months later. My surgeon told me the equivalent of being “hit in the back with an ax”. I had 94 staples. I couldn’t use my right leg for 3 months because the Dr. scraped my right hip for bone to pack the fusion with. I didn’t walk normally for 1 year. I have the exact pain now that I woke up with after 1st surgery. My back, hip, right leg and foot hurt constantly. When the pain reaches a certain level, it bleeds over into my left hip, leg and foot. I’ve been told by doctors that’s impossible, but it still happens. One of the ways I describe my back pain is “a bloody hole in my back” because that’s exactly how it feels. I also had an MRI a couple of months ago. I now have a new ruptured disc. I had injections for years that never gave me one bit of relief. My doctor just kept putting the needle in a different spot each time, saying it would help. He also didn’t like to hear it wasn’t helping. Probably because it’s a huge money maker. I usually see the PA, who was always so nice. My last appointment he told me “we” needed to lower my medication because the pharmacy wouldn’t fill it. I said I would go ahead and try to fill it without lowering it. He was angry that I didn’t want to volunteer to lower my dose. I had no problem at the pharmacy. My Dr wants to put an electric stimulation wire in my back, plus the battery pack, for my pain. I told him I have a TENS Unit but he insists this is different. How? It’s the same concept. I will never agree to have this put in my back. I hate the pain scale. The people making all these new rules have never had any real chronic pain – the doctors, physicians assistants, pharmacists, governors, senators, and all the other “experts” on pain. We are being lumped into a pile with users of illegal drugs and it isn’t right! We need our own Dream Team fighting for our rights to feel better!

John Lincoln

Absolutely amazing. It takes someone who suffers just like I do with severe chronic bone pain to understand and write exactly what I would have written if I were to write and explain my condition and situation with the doctors who have no clue about my condition and never believe what I am suffering. Not to mention the disbelief the SSA has towards my condition or the disabling effects.
Thanks for having the ability to write and post what I have not been able to voice or put into words.

chuck darrah

All of us in chronic pain feel the same way. I have been disabled and in chronic pain for 19 years; all my problems are degenerative.Yet the night before I go to the pain clinic I am anxious and unable to sleep. After I get home I feel like I have been violated and I am some kind of low life. That usually lasts about 4 days along with worrying ; did I say the wrong thing ?They want us to feel this way so we ask no questions etc. Hang in there, maybe some day humane and sane treatment will return to the medical profession. May the road always rise to meet you.

Jeanne

So true! I just received this YouTube video for how to communicate pain to your doctor. I hope it helps you all and me tomorrow!

https://m.youtube.com/watch?v=SmTsqgS8ZuI

curtis ray

hello folks. i feel for each and everyone of you. i also have chronic pain that has changed all i am. what i type and what is read is hard for me. i upset others easy so i will be quick. i have had a pain pump installed about killed me. has a stimulation machine about got me arrested. as i am unable to control jerks from it. since i partake in the gift the good lord put on earth for us i no longer get any pain meds. none nothing and drained my machine on spot because i smoked a plant put here by god himself. one persson below nailed it as they said there is no fix. they are scared chicken idiots with a paper saying they doctor. bid deal. i was paid 212.00 per week to extinguish better people than them. i deserve what i got in al-najeff. pain scales are the dumbest idea i ever seen. none of you deserve constant pain. none. i am sour and angry and not ready to pass. i wish i had earlier. they will never let you rest taking their dope. my pain is hard and constant like every thought. every day. every second of those days

se weiss

“They” say there is an increase in pain meds usage and overdose maybe because there are more people who need it than there was 10-20 years ago. and the older population is growing because we are staying alive longer. If someone was looking in at this mess I bet they would be appalled that we have the means to stop or decrease pain and we are not using it. that is just cruel.

Steve Bratcher

Great article being right on the subject! Even the comments are right on the mark! Keep on writing about this because doctor’s and nurse’s need to hear it and hear it loudly. My wife is a new nurse and when I try to explain this to her I can feel her eye roll ( kind of true) but you know what I mean!!

Hang in there everybody!

Smokey

Katie Olmstead

How about this problem? For those of us who have lived with pain for years, we have become used to it. We may be able to function at a higher level than these pain charts would suggest WHILE having pretty high levels of pain. If I tell a doctor that I have a 6, do I look too “normal?” Would they not believe me? Plus they usually say, “In this moment….” Well, how long did you keep me waiting? (Liza, I know I simply couldn’t manage your long waits) Did I dance the night before and thus have higher pain levels? (yes, I dance, and often, and I pay for it) Have we had bad weather so I have been home more and had more rest time and thus have a lower than usual pain level? Stupid scale. TALK to me about my pain. Ask how much it is interfering with my daily living and my ability to experience joy. That can be meaningful.

dan

1. Whenever I am asked to fill out the useless pain scale, I always submit 2 numbers for each item: one WITH my Rx’s and 1 Without my Rx’s. Seems to work for my docs
2. 2 hours or more wait for PEOPLE IN PAIN is inhumane. This needs to be reported to your states medical board. It is patient abuse.

Sherry

Your story hit it right on the head! Those of us suffering endlessly with chronic pain may all be in severe pain, however, we don’t all express it the same way. We are literally fighting an internal battle and to make things even worse, we are tasked with convincing medical staff of our hurt. I want to say, “My pain is severe enough that I’m putting my job at risk visiting you once a month. My pain is severe enough that I have to use a cane at 42 years old. My pain is severe enough that the majority of my finances contribute to pain meds, medical treatments, multiple surgeries, and of course those wonderful co pays that seem to add up exponentially.

Thank you. Thank you for expressing your feeling and your experience. You are not alone and I was amazed at how similar your appts go like mine! That’s actually really sad. There are so many of us suffering silently. I just don’t get how anyone, especially in this country and this time of advances, etc. is experiencing any pain?! It’s just so cruel to all of us.

God bless you.

Sherrie Harris

Omg this is exactly how I feel. I won’t go to Walgreens because of their judging us. It’s our pain and everyone is different in how the body breaks down the meds and your absorption of meds chronic pain is not a one size fits all. All these guidelines are doing is harming us. Plenty of help for addicts but not chronic pain. They want ya to shut up do nothing but keep taking the cuts which each one take more quality of life away for a lot of us. The drugs they use off label are dangerous the injections are dangerous and can cause disease. No compassion in healthcare.

Debi

Brilliant article. I’ve felt this way since this b.s. started. First time I was given one to fill out, I read the question about my ”pain level today’ and said aloud “Compared to what?” I don’t have another ‘pain free’ body to compare it with. It’s like a wart on my nose. It’s just there and I don’t think about it constantly. However, Once the assault on opium products started and the DEA invaded my healthcare, causing my pain mgmt. to be at risk, the thought of NEVER getting relief overwhelmed me and I knew I had to fight back or give up and die. Fortunately, I am well-read enough to know that ours is a Constitutional government – of the people, for the people & by the people – and when a federal agency is allowed to piss all over my Constitution, it MUST be corrected … and that takes time & tenacity. Prayer helps, too!

Barbara Harris

I cannot imagine that any one of us imagines that we would become a chronic pain patient. As well the plethora of diseases and disorders that can develop at any time to any one of us, I suggest to everyone involved in this massive change in medical practice, to consider that each of us is one driver texting, one driver’s phone call, one driver taking that second to glance at an incoming call—- away from joining the ranks of those of us in intractable, life-altering, all consuming, chronic pain.

Thomas Kidd

Has anyone actually read the CDC recommendation? It in no way prevents doctors from using opioium based medicine to manage a patient’s pain. Nor does it prevent them from writing a perscription in a daily amount with enough medicine to help keep our pain under control or at least bearable. I encourage you all to keep up with what’s going on. Thank you!

bhusebye

When you are medicated this sliding scare is hard to folllow. Especiallly when your doctor’s appointment may be in the most painful time of your day, like early morning after you get out of bed and have to get ready in a hurry to get to your appointment.

Thomas Kidd

I truly enjoyed reading your letter. And I understand the flustering feeling of the stupid pain scale. I am so tired of being treated like a criminal because I suffer from chronic pain. My pain medicine has been reduced to the point that I am not able to function very much. I am hoping and praying for a return to management of our pain instead of mistreatment of it. Thank you so much for writing. You are in my thoughts and prayers. God bless you. Thomas Kidd.

victoria Turner

Liza this was a great article so sorry pain is something only people that have or seen on a loved one can understand. BTW a good discussion is talking about pharmacies and how they make you feel and question your Drs. management and having no clue and I hope they never have to deal with pain and are on the other side of the counter in your place.

victoria Turner

I sit next to you in every pain management facility. We suffer through these visits trying to make ourselves feel some relief and trying to convince the staffers that we are not going to be the next celebrity that OD”s on opiates. Well written and every word rings familiar or I have been sitting in that waiting room with anxiety until you give them urine wondering if they see blood in the sample would they tell you or they just are looking for new types of drugs you sneaked into the mix. In my case I have had blood in urine I was sick but they didn’t care.
I think the key to finding what works for chronic pain after all the testing, diets,injections etc is having the right kind of medical management. Pain clinics ads and Drs. that say we can help you get you in their facilities and as soon as they see your history and medications you are taking turn to you and say”we have no intention of giving you medication” we will give you enough for a few weeks and than they rattle off a dozen tests you have had to only find out that medical management is the only available option for you are allergic to steroids, NSAIDS, yoga with Fibromyalgia kills you for days after and yes you have been on that dosage for a long time. No you aren’t looking for more just to maintain a level or quality of life that is bearable. I have Fibro, CFS, IC,LS, Vulvadynia, Spinal Stenosis lumbar and cervical, scoliosis, sciatica, and spondylosis.
Word to the wise Anesthesiologist are good to monitor pain. I see one
Finally. If you need a pain Dr. call offices and same money,humiliation and co-pays by asking the operator if they medically manage patients or if they don’t know find out from someone.
If they say no. Move on. This is so important otherwise you will be made to feel worse than the pain does. To all my brothers and sister suffering.It will never be gone but it can be a lot better with the right care.