The Dreaded Pain Scale

The pain scale doesn't work for me, it's meaningless in describing my pain level. I'm very, very rarely a 0 (zero), if ever. I think we adapt to chronic pain such that a 3 or 4 for someone less pain tolerant doesn't even register for us chronic pain sufferers any more, I'm very, very rarely a 10. I base my 10 on the 60+ days of constant debilitating pain I felt during misdiagnosis for gall stones, especially the last 48 hours before emergency surgery to remove my gallbladder, that had gone gangrene, For a woman, that 10 might be an especially painful, many hours long childbirth. Since everyone has a different pain threshold, and different sensitivity, I see no way to establish a 10 scale pain descriptor. The smiley faces, frowning faces, red faces, etc don't account for the curled up in a fetal position pain many of us experience, whether for several hours or a few days. Even the pain scale descriptors in the 8 - 9 range that totally interfere with my daily functioning feel more like a 4 or 5 in my own personal pain scale. I'm just venting here. I'll bet many of you can relate to this conundrum.

Yes I can relate and have thought about this many times. I feel like my pain level 2 or 3 is someone else's 9 or 10.

@theconfessor

Tired of being asked. Whether in ER hospital or doctors office. They don’t believe your number but they have never been in constant pain for 16 months plus. I am a 8-9 daily. I shouldn’t even be alive. They think how can you be that high. I know pain has headaches for 25 years. When higher I need ice packs. My abdomen hurts all the time. Luckily I get in 6-7 hours of sleep a night. About had it since all tests have been done along with drugs and pain mgt. Even had gallbladder out two weeks ago. Only helped some with eating and stopping the massive weight loss of 45 pounds. My pain in my pelvis and around my xiphoid is always present. I’m at an 8 which is awful as we speak. Others would have died by now.

If you would like a little humor concerning this topic, watch Brian Regan's "Emergency Room" clip.

This is bizarre, I was just thinking about this recently. I always feel like if I tell them about my pain they will think I am looking to feed an addiction. When in reality, I am intolerant of all opiates so this couldn’t be further from the truth but still I avoid mentioning pain or looking for solutions.

It's unfortunate that you avoid mentioning pain and have stopped looking for solutions. I understand that attitude. Long before my pain issues cropped up, I was in treatment for bipolar disorder. There were feelings I had to keep quiet about because revealing them would lead to being labeled suicidal, when in fact, I wasn't. I know that's a different topic but I mention it to assure you that I know what you're going through. One important thing I learned during mental health treatment was that the patient has to take control of the patient/doctor relationship, not let the doctor dictate treatments that you know haven't worked for you. In other words, the patient actually hires the doctor, and can fire the doctor and find another who is more compassionate and knowledgeable about the need for whole person (mind, body, and spirit) analysis and treatment. I'm not advising you to fire your doctor and/or medical providers, you might not have an alternative choice. But I am attempting to inform your attitude. You say: "I always feel like if I tell them about my pain they will think I am looking to feed an addiction." Do they really? Are you sure? It's human nature to make assumptions like that when you experience trauma, debilitating pain, and other conditions that can diminish your reasoning and thinking processes. It's nothing to be ashamed of if that is happening. Please consider that possibility. If you come to the conclusion that what I've said may be interfering with getting the best possible care, write down some notes that explain your pain; where it is, how intense it is, how you feel about revealing it, ideas for better outcomes. You might make 5 notes to yourself on some days, you might make 1 or 2 over a weeks time.As you continue doing this, things may become clearer in your mind about your assumptions and why you've made them. You could be 100% right about your assumptions. But what if, yes, what if you start to see a flaw in your viewpoint? What if your notes open you up to a more positive attitude about your medical providers? Review your notes between doctor visits and try to improve them by summarizing them, condensing thoughts that you've repeated during the process into one coherent sentence or a short paragraph. you have nothing to lose. Then, during a week or 10 days before your next doctor appointment, put those notes into the form of a letter that you can ask your doctor to read. Myself, I get distracted and overwhelmed trying to explain some things, and end up forgetting everything I intended to talk about. I've been with my doctor for about 8 or 9 years now, we've established a trust, I don't have to repeat things I told him 3 or 5 years ago unless they've gotten worse, or better. We discuss how some issues could be a result of some event or that they could be temporary. I'm lucky to have a very compassionate and knowledgeable doctor, I know not everybody does. So just think about what I've written, OK. Believe in yourself, keep your cool, and try to open up better ways to communicate. Maybe it will help, maybe it won't, but as I said, you have nothing to lose. There just may be a solution out there that can be found if you set aside your fear about talking about pain and are able to communicate it in a different way. Good luck auntieoakley.

Thanks. Humor is always helpful. I can relate. Many years ago I was malpracticed and misdiagnosed in an emergency room for an excruciating pain on the right side of my abdomen. They gave me a cup of PeptoBismol and sent me home. I spent most of the next month curled up on the bathroom floor in a fetal position, until my doctor referred me to the chief Gastroenterologist at a teaching hospital. Within 20 minutes, after a sonogram, he was irate about the malpractice I'd been subjected to and told me my gallstones had totally blocked up and I needed my gallbladder removed, soon. He lined me up with a surgeon, we scheduled the surgery for as soon as he could fit me into his schedule, about 3 weeks later. I did the pre-surgery tests, like the treadmill, a few days later so I could go straight to surgery when the time came. I didn't last 3 weeks. After another week curled up on the bathroom floor, I called his office to see if we could do the surgery ASAP. He was at a different hospital doing different surgery, so they told me to go straight to the emergency room there. It took a couple of painful hours before he could see me, he reassured me, built up my confidence I'd feel better soon, and I started prepping for surgery. I woke up in a morphine fog a few hours later, I immediately felt like a poison had been removed and though I was foggy and weak, I did feel better. He arrived maybe a half hour later and explained that my gallbladder had gone gangrene and if I hadn't gotten the surgery a few hours earlier, I would have died of gangrene within 24 hours. What a relief that was. I asked if he saved my gallbladder in formaldehyde for me, he laughed and said no. I was disappointed about that, it would have made a great conversation starter. (Humor is helpful). The next day he was ready to release me but I asked if I could stay another day for the respiratory therapy, the leg compression therapy, and most of all, another day of morphine so I wouldn't need pain meds for a couple weeks. He agreed. I had no limit to morphine requests, I didn't abuse it. The next day, I had already made about 10 laps around the entire floor area when a nurse came in to tell me it was time to get up and start walking. I laughed and told her I'd seen her at her station goofing off during my 10 laps, which embarrassed her. A little while later I signed the forms to be released, got dressed, and made a bee line for the door before they even processed my release documents. The only humor about that story was of course, wanting to take my gallbladder home. That was about 25 years ago, and I'll caution anybody reading this that gallbladder removal does cause some digestion and bowel movement side effects that it can take a while to get used to. But if it has to go, it has to go, and humans adapt to the alteration. Thanks for your reply Susan, I have a ton of humorous stories from my life, but they're not about illness and emergency rooms. Sometimes just those memories help me get through the day. Best wishes.

You should be alive, don't think you shouldn't. Life is tough for many of us, even tougher for some of us, but we are genetically programed to survive as long as possible. Concerning the gallbladder, read my reply to Susan in this thread. Maybe you'll get a laugh from it and a boost away from your thoughts about others should have died by now. I hope so. Keep on keeping on!

I am sorry if my post led to a feeling like I had chronic pain. I really don’t other than normal aches and pains of aging. But I had a bad tooth extraction lately and there was a lot of pain over a two week period with dry socket. This led me to spend time thinking about the pain scale and how discussing my pain with doctors in the past has worked out, which in turn led me to think about other people I have advocated for and how those conversations went for them. Including my husband with multiple myeloma. How he uses the pain scale and how good his oncologist is about controlling his pain. Locally we have an epidemic of opiate addiction (like everywhere), it is very difficult for good doctors to discern what people need, and even worse when the patient struggles to describe it. This was just the wanderings of an idle mind.

I understand better now. My comment was intended for you, but also to be helpful to anyone else who felt the way you expressed yourself. Our exchange of ideas may help many others understand they're not alone in their thinking, and learn a strategy that helps them. Best wishes.