Pain scale 0 to 10 method of assessing. Vector illustration medical chart design

The Difficulty of Rating Pain on a Scale of 1 to 10 When You Deal With Pain Often

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If you’ve ever visited a medical facility with the complaint of “pain” they’ve probably asked you to rate it on a scale of one to 10, with one being no pain at all and 10 being the worst pain imaginable. This question was probably difficult to answer, even if they showed you the chart with the faces. I might even venture to guess that unless you are someone who has dealt with a good variety of pain, you could be rating a cold as high as an 8 — and, unless you are dying of it, it is probably unlikely to help the doctor that you think a cold is an 8. However, because so many people cry wolf in this way, it could mean serious things are being majorly overlooked.

I am by no means a medical professional, but I’ve had to fine-tune my answer to this question over many years. I find that if I feel perfectly normal (hah!) I’m a one, so almost never. My baseline is maybe two or three, implying in my head that things hurt but I’m used to it and it is in no way an emergency. If I make it to a five I’m in a lot of pain — you know, the “stabby” kind or “I just woke up and feel like I got run over by a bus” kind (no, not literally. See how hard it is to explain pain?). Anything above a seven should at least land me in a doctor’s office, if not a hospital, like that time I had a kidney infection — a solid seven there. I tried to convince myself I could push through the pain. As it turns out I could not (only made it two hours — actually five if you count the ER visit, but still, I felt like a wimp!).

I also like to always compare my pain to the times when it was so bad I was throwing up. I figure that might be an 8.5 (10 numbers only seem like too many until you can’t decide…) And I’ve never experienced this, but I’m going to put gunshot wound as a 10, because I cannot imagine the physical pain that would put me in but I do know it would be a lot, and that television characters probably don’t express nearly enough pain when they are shot.

But that’s just how my mind works with this system. Now to be fair, I’ve had nurses tell me that what I describe and the numbers I allot to said pain are what they think should be accurate, so maybe I’ve conquered the system. Of course, in praising me they always seem to have all those people in mind who think their cold is an eight. So maybe it’s just a hard system to decipher.

Unfortunately, I don’t have much to offer up in terms of alternatives. I myself have a hard time describing a type of pain unless it is “stabby,” because sometimes “dull” doesn’t seem like enough and any other term is not what I’m looking for (“achey” apparently just implies that there is pain that is not “stabby”). 

One things is for sure, though, I can always tell you if something is in pain and if it is in more pain than before. Wait no, that’s not right. I can’t do that, either.

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When a Doctor's Advice Awakened My Own Doubts About My Pain

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Today was an amazingly productive day. I got a lot of things done, including baking both cookies and cupcakes. And yet, I still took Tylenol twice, reduced my subluxed sacroiliac joint half a dozen times, got nauseous twice, and had to lay down to rest and ice three times. And this was a good day. The day before yesterday I spent almost completely in bed, and when I did force myself up to do some housework, I ended up back in bed after a few minutes, crying from pain and frustration.

The doctor I saw yesterday didn’t see any of this. He spent 15 minutes with me, listening to a brief medical history of the past four years and doing a physical exam. At that point he told me that I need to exercise, get out of the house, and return to work as soon as possible.

Maybe I didn’t explain well enough how the pain and fatigue impacts my life. How I do physical therapy, but must carefully monitor my body to try and determine whether the pain I’m feeling is “good” or “bad.” How I want to exercise and get out of the house, but most of the time I end up injuring another joint and get set back for weeks. How I cry thinking of the hikes I may never go on again. How I want to work, but between my pain and my brain fog it’s impossible right now.

Yet in the brief time we spent together, he reignited my doubt. Maybe I’m exaggerating. Maybe I’m not that sick. Maybe I’m just lazy. Maybe I just need to suck it up and try harder.

The doctor wasn’t even mean. I’m sure he meant well and thought he was helping. In a way, that makes it even more insidious. It’s easier to ignore someone when they obviously don’t have your best interests in mind. Instead, he used his position of authority to give me advice that was unhelpful and invalidating. And that is unfortunate.

A little validation goes a long way when you’re in chronic pain. We live in a culture that tells you to pull yourself up by your bootstraps and tough it out when things get hard. It takes willpower to slow down and listen to your body. I have to remind myself often that it’s not lazy to rest when I’m ill or in pain, or that just because I’m not feeling pain at this moment doesn’t mean it wasn’t real. My pain is real.

In the end, I allowed the doctor’s words to get to me. The doubts he awakened were my own. It reminded me that I still have a ways to go in fully trusting myself and feeling secure in my knowledge of who I am.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. Check out our Submit a Story page for more about our submission guidelines.

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To My Physical Therapist, Thank You for Believing Me About My Chronic Pain

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When I walked in to see you, I was nervous. I was afraid you would think I was silly for going to physical therapy when I can do so much and have goals like “I want to lift weights again” and “I want to be able to do all the things I do now, except without pain or at least with less pain.” I was afraid you would see my strong, healthy body and not believe I have chronic pain. 

When I told you resting caused me as much grief as overdoing it and had made a decision if I was going to hurt anyway that I was going to do it while living a full life, I thought you would think I was exaggerating my symptoms.

Instead, you listened. You smiled and nodded when I told you all those things. You looked at my scans and you looked at my body and you could see I wasn’t exaggerating or being dramatic. You took the time to discuss my scans and what they indicated to me physically and to find out exactly where I hurt.

And then you turned and said, “Keep doing what you’re doing, you’ve got this right.”

I must have looked puzzled because you expounded, “Yes, you would have pain no matter what, but when you are out in your garden or running a trail, you’re stealing it’s power over you.”

I looked at you, relieved, and said, “Yes!”

I needed that, those words, right then. I was so relieved you understood what I’m about. 

And then, when you told me you were hatching a plan to help me reach my goals and to do everything I want to without misery, I knew that, together, we would make it happen. You were my partner and would help me embrace my full and active life, now and for as many years as possible.

I don’t like what scoliosis — and the brace I wore to treat it — has done to my body, and I get upset sometimes I had to recover from Guillain-Barré syndrome (GBS) twice. But I will do everything possible to keep it from damaging my spirit, and I have found an ideal partner for my quest.

Thank you for partnering with me to help take back my body and my life. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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19 Things People With Chronic Pain Wish Their Doctors Knew

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When patients with chronic pain seek out a doctor for help, they aren’t always greeted with the compassion and respect they hoped for. While some doctors are supportive of those with chronic pain, too many patients are treated with suspicion and contempt when they discuss their pain and treatment options with their doctors.

We teamed up with the US Pain Foundation to ask our communities what they wished their doctors knew about their lives with chronic pain. Their message to doctors: Calling chronic pain patients “drug seekers” or suggesting the pain is in their heads makes managing pain even more difficult.

Here’s what they told us:

1. “If I could take care of it at home with Tylenol, I wouldn’t be here. I may not be crying or screaming, but it’s unbearable. That’s why I am here.”

2. “It is not fun for me to live my life in solitude, so please believe me when I say I am in pain and need some type of relief.”

3. “I am the master of my pain, and I trust me when I say what works and what doesn’t. Listen to us, because each and every one of us is different, and our bodies and brains are different.”

4. “I am not seeking out drugs, I am seeking relief.”

photo for doctor chronic pain call out

5. “Please realize I want to work with you and cooperate with you. Please understand my pain can be severe without being on the floor screaming, because I have learned to hide my pain visibly to get by every day. And please, view me as an ally to fight against my chronic pain, not the obstruction.

6. “As a doctor, remember that at the end of the day, you get to walk away from me and my pain. I don’t have that luxury. It stays with me whether I walk away or not, whether I think about it or not.”

7. “We are not to be treated as a collective, we are individuals. And certainly not a pesky number to get through before your game of golf.”

8. “My age doesn’t matter; if they could write ‘too young for this much pain’ on a prescription and I could take it and get it filled, I would do it in a heartbeat.”

9. “Every single patient reacts to pain differently. One might scream or cry, one might be silent, one might talk or laugh to distract themselves, but others may not be capable.”

10. “I wish they could experience the pain themselves. It can be so hard to describe, and often I forget the extent of it by my next appointment.”

11. “The question ‘What’s your pain level number?’ means absolutely nothing to me. All-over pain? I live with levels of four to five daily, so if you are asking my level beyond that which I live with, then yes, my pain level number is going to be eight, nine or 10. Please believe me, if I am asking for pain medication, my pain level is beyond what I can handle. I wouldn’t ask if I didn’t really need it. Just believe me; that’s all I ask.”

12. “I wish doctors knew that I am OK with them not having all the answers. I would much rather a doctor tell me ‘I don’t know that answer and will have to look into it’ instead of pretending to know. I would rather a doctor be willing to learn with me.”

13. “I wish my chronic pain management doctor would write a letter to social security disability explaining how not treating pain could cause more problems and that it’s never going to go away no matter what job I do!”

14. “I can be happy and be in horrific pain at the same time. If I’m smiling it does not mean the pain is less or better; it just means that I know I am more than this fragile body.”

call out for doctor chronic pain post

15. “I wish these doctors who took an oath to cause no harm would realize every time they downplay our pain they’re causing harm. I’ve been living, if that’s what you call it, with RSDS and chronic pain for 25 years. If I hear one more doctor tell me narcotics are bad for me I’ll scream.”

16. “It is almost impossible to care for four growing boys and a [terminally ill] stepfather without some type of pain management. Doing simple household chores can leave me bedridden for days if I attempt to do them like a normal parent. My children deserve a mom who can function on a daily basis.”

17. “I want doctors to understand that when you are in chronic pain, pain medication only helps dull the pain. You do not enjoy pain meds. They are not for fun or a high. They are strictly to be able to function at a little higher level. Makes you able to get out of bed without tears in your eyes. Chronic pain eats away at your very being.”

18. “I wish they understood just how much pain we are in all the time… and I wish they would not lump us in with the people who overdose on opioids like Prince, Michael Jackson, and such… Just because some pain patients need medications like opioids to make their quality of life better, say to help one get out of bed or function better. Instead they choose to treat all of us as addicts just because we have chronic conditions.”

19.I wish that doctors could understand that it’s something you can’t out-think.”

What do you wish you could tell your doctor about your pain? Let us know in the comments.

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Who We're Leaving Out in the Opioid Addiction Conversation

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This is difficult to write. There’s been an awfully big uproar lately about opioid addiction and how drastically it’s affecting our countries and cultures. As of writing this, I’m watching a documentary in the background about prescription addiction on Netflix, and unfortunately, the documentary maker lost his own brother to opioid addiction while battling with his own. Several interviewed have lost family members to addiction. A recent famous singer autopsy report revealed that he passed away from an overdose to pain medicine. But here’s the problem with this rhetoric I keep hearing over and over, or rather lack thereof: Not every person who takes opioids is an addict.

I am on opioids, and I am not an addict. I know many people reading this are also not addicts. The media has unfortunately been leaving a huge portion of opioid users out of the picture. It’s these people who need to start having a voice in this conversation — those in chronic pain with disabling conditions. We are not addicts, although I don’t think many would deny it could easily turn into such a problem. We are dependent. Dependent to not be in pain, dependent to function, dependent to maintain some semblance of our lives and seeming “normalcy.” Without my pain medicine, there are days when I wouldn’t even be able to get out of bed or spend time with friends and loved ones. Pain medicine absolutely gives me some sense of freedom from conditions that will likely never go away as I age, and I cannot imagine that freedom being taken away from me or so many others like me. 

I moderate and participate in several online support communities, and my partner works for a home health care agency. What has become imminently clear is this — many of us do not want to be on painkillers. Many of us would seek other options if they were readily available. However, due to what I believe are the systemic problems within the medical systems, we’re between a rock and a hard place. Many of us do not have the ways and means for other treatment options. Things like exercise, medicinal marijuana, disease modifying drugs and treatments, physical therapy, chiropractors, different ideologies for medicine and so forth, are extremely expensive, not easily accessible and sometimes illegal.

There is no doubt there is a problem, but I don’t believe painkillers are the inherent problem. I believe the problem varies on many levels from doctors not listening or pushing to find answers, to the big pharmaceuticals making obscene amounts of money, to general education, to lack of proper health awareness and help. Addiction is a horrid, life-altering, destructive thing, and we absolutely need to fix the problem. I’ve seen it happen and have even lost family and friends to it. It is easy too for a dependency to turn into an addiction, and I urge anyone who has a serious addiction to seek help. However, I believe those of us who actively benefit from prescription painkillers are drastically, and quickly, losing our voice.

So for those like me who use painkillers properly and for one step of our pain management, I urge you to speak up so we don’t lose our voice entirely. For those who love someone like me, change the rhetoric in your talks about opioid addiction by letting people know this is turning into an issue that’s taking away a lot from people with disabilities and chronic pain. Change the tables to show there are many more issues than just the pain pill epidemic and how we as disabled people can fight back. We have a problem, but the problem is not us, nor is it the drugs we take to live.

Lead photo source: Thinkstock Images

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To Anyone Working in the Medical Field Who Comes Across a Chronic Pain Patient

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This is a letter to anyone who works in the medical field that comes across someone with chronic pain

I live in chronic, 24/7, 365 pain. I am not a drug addict. When I tell you that my pain is constant, I’m not saying that to be dramatic. I wake up in pain, exist in pain, go to bed in pain… I say exist because that is in fact all that I have been reduced to. Chronic pain has stolen so much from me in the past three years including my college education from my dream school, my job, relationships, my independence, some of my vision, my sanity, my happiness and so much more. I am not wearing these dark sunglasses indoors because I think it is fun. I know that when you come to check on me in the emergency room and I tell you my pain level is a 10, you may be skeptical because I am talking to people and sitting up, seemingly OK. That is not because I have a drug problem or just want your attention. If I have made the choice to make the trip to the emergency department, it is because I have battled this as far as I can on my own and have been unsuccessful in getting it under control.

But when I come to the one place that I think may be able to help me, I’m generally greeted with condescending looks and disbelief. That Toradol you just ordered that I say does nothing for me? I’m not joking. I’ve given that my best shot before seeing you and when you look at me with that glare in your eye that just “knows” I’m only there for the strong drugs and tell me, “Well, it won’t hurt anything so we’re going to try it anyway” in a tone that can only be described as horribly judgmental, you make that feeling in the pit of my stomach that says “No one can help you and you will never escape this” even more sickening. 

I took my last emergency room trip because I lost a lot of my vision and was losing more each day. It was accompanied by my ever-present headache and the feeling of knives stabbing the backs of my eyes. I was sent to the observation floor where I was to wait to run some tests the following morning. I asked for some pain medication after being awake for over 30 hours (the pain does not invite sleep). Once I waited until shift change was over so as to not stress the nursing staff, I asked for some pain medication. My nurse, who had already pigeonholed me into the drug seeker category (per a conversation I overheard from the nurses station), said she would ask the doctor but that the only thing they had ordered for me was Tylenol. Two hours later I asked again if she had spoken with the doctor. She hadn’t and there were still no meds ordered. Another two hours later, after asking a different nurse, I was given Toradol, which has absolutely no effect on the pain for me.

I was told that the MRI and angiogram came back completely normal yet again, and my mom and I couldn’t help but just sit there and sob. We had been praying for anything to be wrong so that I could maybe finally have a reason for the years I’ve spent clawing my way to the end of every day. Every doctor that spoke to me to me told me to “be thankful it isn’t worse” or something to that effect. Let me tell you, when you are trapped in a body that is only 23 but you have the limitations of someone much older but no reason, no treatment plan, no doctor that is even interested in attempting to treat you, and no sign of it ever ending, there are few things that feel worse. It feels like I have been trapped in this body with a life sentence of constant, slow torture.  

I take advantage of the days when I am able to function somewhat normally, but those days are not without pain nor payment. If I use too much energy one day, the next day my body is sure to let me know. I don’t sleep well anymore and sometimes I don’t sleep at all. I don’t make plans with people often because I usually have to cancel, not that I have many friends left anyway. I will be forever grateful for the one friend in my life who is so patient and understanding. Those people are few and far between. There are many days, though, that the best I can do is draw the curtains and sit in a dark room with Netflix for company. 

So to the nurse who treated me like a drug seeker, I know it is hard to grasp that someone could live like this with no explanation and it actually be a real thing. It’s hard for me to understand, too. I know you come across some people who really are just coming to see you to abuse drugs. But before you become calloused and cold, maybe try putting yourself in my shoes for a moment and think about the position you are in. I don’t know what your life looks like at the end of your shift, but I do know that you still have the ability to hold a job. Me? I’ll still be stuck here. Stuck in this body that betrays me every single day of my life. Stuck in pain. Stuck in the same part of my life because I no longer have the ability to move forward. And thanks to you, I’ll be stuck feeling like I have nowhere to turn for help and stuck feeling so alone I think I might actually implode on myself.

I hate the fact that I am afraid to be honest about how I’m feeling to the medical professionals that should be treating me because I know I will promptly be stuck in the “drug seeker” box. And you are to blame for that. The people who come in abusing drugs are to blame. This broken word is to blame. The patient lying in that uncomfortable bed with the blindfold on because the light is too painful to bear who has already spent hours or even days putting off this visit trying to deal with it on her own? That is the person who will end up taking the fall for it.

So yes, I guess I am coming to see you for the morphine. I’ve run out of alternatives. That doesn’t mean that what I feel isn’t real and it doesn’t give you an excuse to dismiss me. That does not mean that I am an addict, but when I am refused help from the one place that should be a safe place to ask for it, I do start to sympathize with the pain patient that ends up addicted to heroin. This is an incredibly lonely road and support is not freely given. 

I am not weak. I am not being dramatic. I am not here for the attention. I am not here because it’s a fun activity. I am quite possibly one of the strongest people you have ever met. But I am here for help. And yes, I’m here for the morphine. 

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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