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Stoic, stubborn, whatever you call it

lilac100llilac100 Posts: 180
edited 06/11/2012 - 8:48 AM in Pain Management
Ok I have a problem. I'm stoic or stubborn, something in me is broken. When anyone asks me how I am I downplay the pain, my standard answer is I'm here. So what I need to know is how do I communicate the true amount of pain I'm in? I can never seem to tell the doctors the truth. I have an appointment Tuesday with my PM doc, I know he know's I'm downplaying the pain. Maybe I just don't want to admit it to myself. Even when I was going into surgery the Anesthesiologist asked my pain level and I said 4. After the first round of meds he fired in the IV didn't work rapidly he said to me "you didn't tell me the truth of the pain level did you?" I said probably not. He then upped the medication to get me out.

So really how do I explain the truth of my pain? It effects everything about my life. I avoid things because I know it is painful. Even with that when asked I still downplay. I just can't understand why. I can say it here, but not in my regular life.


  • I'll PM you a link.

    It is just a few different descriptions of pain scales in more logical terms, so we stubborn stoic people don't get caught up in it.


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  • Maybe try writing it all down, when you're in a higher state of pain, you might be more likely to be truthful about it. Pu everything down, how it affects your daily life, what levels of pain you have after doing certain activities, what helps with it, everything. Then take it with you to your next appointment. Just be sure to take it, and not crumple it up and throw it out, lol! Will somebody be going with you to the appt? Maybe give it to them to give to the doctor.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Thanks guys. happyHBmom I read the link you sent. Seems I haven't seen a 4 in many years, LOL. Guess 6 is going to be my good day answer. smiley735 I really wish I could see my doctor when my pain is at it's worst. I work night shift and my pain is at it's worst around 4am and no doctors are around then. I've tried to make lists and such I'm not really organized but think I will try again.
  • I usually find that selecting one or two activities of daily life that I try to do and can't helps explain what my pain level is or has been. For instance "I couldn't even lift the coffee pot to pour myself a cup of coffee this morning". They will usually clarify if it was due to weakness or due to pain. Seems to work for me.

  • Lilac, when the doctor asks "how are you feeling now" I translate that in my mind to "how have you been feeling since I last saw you?" and answer that question. Because regardless of how THAT day was, I have generally had both good and bad days during the month.

    And, really, the doctor doesn't seek to treat you only when you're in his office, right?

    So my answer might sound like "At the moment, I'm hovering around a 5. But it's been a tough month, and I had at least 2 weeks that I couldn't get below a 6/7 no matter how I tried." (actually my current doctor doesn't use scales, but you get the idea).

  • I like the facial expression scale that they use a lot for little kids. I think it gives a much better idea of exactly what the numbers indicate.

    A funny example. One time my husband and I were just relaxing in the hot tub. He hels up his hand and said, "look at my fingers. They are all shriveled up. It hurts so bad." Hurts??!!??. So I asked, "On a scale of 1-10, where is your pain level?" He replied, "Three or four." WOW! When I showed him the facial scale, he laughed and changed it to two. However, we all interpret pain differently.
  • I found it easier to take the scale, and make it fit my life. At 1 - I defined it with things that made sense to me. Mine had 10 levels, because I can live the day at a nine, and be fine, I am a hair away from leaving for ER.

    It contained things that I do each day, examples.

    On the other side, was a Dose chart, man figure for placing the pain and a list of my fav things to counteract pain, and the last on the list was my meds.
  • I appreciate all of the great advice. Hopefully I will be able to convey my feelings. I'm still kinda in denial about the whole thing.
  • On using 9 and 10 on the pain scale- I have heard doctors describe the maximum as "surgery without anesthesia." I know you'll see it tossed around here by some people, I'm not a fan- many doctors consider 10 a level of pain few people have experienced. I think they are thinking of people who have been through severe trauma, not people with back injuries.

    I know it's relative, but it's also a part of dealing with the system.

    Honestly, I've never even been able to choke out an 8. Using the chart I gave you, I'm functional at 5, semi-functional at 6, non-functional at 7. I was 9 in the emergency room right after my accident (multiple fractures) and had a lot of 8 days directly after, but any day I can get out of bed I pretty much call a 7 or lower. As long as they put me to sleep for my surgery I hope to never see a 10 :)

  • for about 8 months following my Lumbar fusion in 2007. I was unable to be real with myself about the level of pain I was in. It was not until my NS said to me one day, "Okay Jackie, pretend I am not wearing this white coat and just tell me how you are doing", that I snapped out of it and got real with myself, and him. I blurted out that I was completely screwed.
    Having spine issues has taught me a great deal about self care in so many ways.
    Now, most of the time, I communicate with doctors about my pain using the pain scale in relation to certain activities, procedures, therapies etc.
    My doctors seem to understand me better. Learning to be real with myself has been an empowering, but I still have times when I struggle.
    I am glad you posted and asked for help!
  • I have had kidney stones in the past. I will put them at a 9!! If I am hurting that bad, I can't do anything!!!
    I will be in the recliner, or in the bed with an ice pack and my ipod!!
  • When I had my first son, I had an allergic reation to the demerol and the cord wrapped around his neck. They pulled him out when I was not fully dialated. For me that was my 10 (the way my Dr explained it 10 being the worst you ever had - which really makes it different to everyone). For me, 4-5 is what I live everyday, 6 is when its's getting really bad, 7 is when I am in bed and cannot get up (having the thought, do I need to go in, can I take this?). Thankfully I don't have many of those days now, I am finally starting to realize my limits and work within them.
  • Turns out my doctor is one smart person. I just straight up told him I can't tell him how much it hurts. I explained my mental block with admitting the pain. He told me not to worry about it. He knows exactly how much pain I'm in and exactly where it is. We did a hardware block in his office, with ultrasound to guide needle. He normally doesn't do them in the office, but he is having elbow surgery today and wouldn't be able to see me until January for any kind of shots. He actually said during the shot he wouldn't do it on most people but knew I would be able to stand up to the pain without the sedation.

    OK drumroll please............ THE SHOT WORKED. Instantely. It was awesome I felt soooo good I was actually laughing in his office. I told him how amazing he is. Anyway he injected cortisone along with the lidocain to try to see if I could get any long term relief. After the lidocain wore off my pain is worse then it was, but he told me that was going to happen. Said I'd be sore for a few days then hopefully the cortisone would start helping. If I don't get several months of pain relief we will be looking at removing the hardware.

    One more thing for those really interested about the Leg Cramps that seem to follow these shots. He told me that with some people it IS a side effect. I had really bad cramps after the facet joint injection, they lessened over a period of a couple weeks. Unfortunately they are back after this last shot, but I can deal with that since I got a good answer. He couldn't think of anything to do to prevent them or make them better. I've already done water, vitamins, some all natural thing, the only thing that helps is a hot shower.
  • Lilac, that is terrific, I'm happy that it worked instantly for you, I hope that once the post-shot pain subsides the relief carries on!! Congrats for jumping that mental hurdle of being stoic.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • But if the doctor says "the worst pain you've ever had," they are using a different scale. The typical scale is "the worst pain you can imagine."

    But it also means we need to listen carefully to the question!

    The Brief Pain Inventory uses "pain as bad as you can imagine" as 10. That is a pain scale that has been validated by research. It has many other questions as well, though, that discuss functioning.

    If a doctor or practitioner is trying to quote that scale but misspeaks and uses different words, they can't go on the validity of that scale anymore, as validity testing was based on the specific wording of the BPI. There are many other scales, of course- the faces scales and the visual analog. But I haven't seen any that use wording such as "the worst pain you've ever felt." That doesn't mean there isn't one, though.

    Lilac, good job talking to your doctor. Glad you have some hope for relief and have found the cause of your pain!

    eta: The Numeric Rating Scale (NRS) also uses "worst pain you can imagine." I think that's the one most doctors are using.
  • Thank you for coming and sharing here so we can celebrate this great news with you that the shot worked and that you have begun to talk about your pain. I am happy for you Lilac! Please keep us posted
  • happyHBmom said:
    But if the doctor says "the worst pain you've ever had," they are using a different scale. The typical scale is "the worst pain you can imagine."
    I've only ever been asked to rate my pain on "the worst pain I've ever had" from multiple doctors and surgeons over many many years (I've lived with chronic pain for over 25 years). That means, of course, my "10" has changed many many times over the years. But it's all relative. If your doctor knows your medical history, has a good idea of what you've been through, then he/she would have an understanding of your description of your pain, based on the pain you've had in the past. If you find yourself saying "I've never had pain this bad in my life", then that would be your new "10" and you need to adjust your rating scale accordingly. Personally, I despise those scales. I'm pretty lucky in that my pcp and my pm both know how I'm feeling just by looking at me, so I don't have to express my pain in that forum. My pm laughs at me, because after getting joint injections or RFAs, he always gives me the "pain diary" with the rating scale on it for me to complete during the 6 hrs following the procedure, and I usually throw in the garbage on my way out or "forget" it in the examining room.
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Lilac,
    We all try to hide the truth from ourselves and stoicism may well be an innate competence or something we develop, where the notion of disclosure seems not the done thing or encouraged to embrace. It is Ok to be tough and develop that resistance and as you are experiencing, containing those feeling and not letting them out can lead to additional issues.

    I have learned only to tell people who can help and it is OK to acknowledge when you need more and support, it is not a failing rather a strength. However stubborn we are it cannot surmount the pain and at some stage we are going to have to acknowledge the reality and that in itself may mean doing something about it and changing.

    I am now assertive in what I want and need not validate that with a reason, I know I cannot do things, I am able to do some things well and find simple things impossible at other times. That duality of capability is difficult for those viewing my functionality and for the most part, many have no comprehension at the amount of continual pain I endure while acting normally.

    Admitting to oneself that this is not the life we had planned, and that changes are imposed even without our consent is always a difficult and emotional transition. That inevitability of knowing our future in pain is not easy, simple or uneventful.

    Many people keep the reality of pain to themselves, while others shout from the rooftops, your doctors knows through experience that we are all different, where some would not admit to any weakness. Keep that positive side going, we all need help sometimes and asking can be hard, in building our own positive list of probabilities we are more able to adapt, preferable to being persistently negative which cannot be easy.

    The pain scale is only one tool and should be used in conjunction with additional assessment and evaluation, to some extent it is reflective in how the patient perceives pain to themselves and any higher order number are reflective of how pain itself is perceived, based on personal experience and past history, it is rarely just the pain in isolation and as this thread comments, a low number not reflective of the actual pain to any individual.

    The first requests for additional help are sometimes the hardest and the consequences not as bad as we may have initially thought, we have learned from you.

    Take care and good luck.


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