I have been thinking a lot about measuring pain. Yesterday I mentioned that I think people with chronic pain have a different scale than “normal” people. Our baseline is set differently. For example, to me a good day is when my pain is a 2-3. I can not remember a day in the last year (maybe longer, when I think about it) when my pain was lower than a 2. So for me 2=0. I have gotten pretty good at analyzing my body, trying to figure out what hurts and how much, trying to figure out which disease is acting up. You have to do that when you have multiple issues, so you know what’s working and what’s not. So each day, I am choosing between my RA, fibro, and my DDD. Almost everyday there is some issue with my back (DDD) and typically my RA and my fibro trade-off (which I feel is pretty considerate of them).
Today my pain was around a 6. Some days I have localized pain that is high and the rest of me is at the 2 baseline. Frequently, it will be my back or my hands that hit a 7-8 while the rest of me is pretty ok. Today I was a solid 6 from head to toe. That kind of pain is rough for me because everything hurts. I can’t use my hands, it hurts to walk, but it hurts to sit. Etc, etc. When I told my acupuncturist that I was 5-6 today and that it was pretty bad she asked, “That’s bad?” I hesitated a moment and I said, “yes when you have already taken a lot of medication and you are at 6.” What I should have said is that when I say six, I mean that it is hard to function. I have taken my normal meds plus Tramadol; I have stretched and tried to walk it out; I have done everything I can and I am still miserable. And maybe it was the fact that so many different things hurt today that made the 6 seem so awful. Who knows. Either way she stepped up my treatment and I left feeling better. Hopefully it lasts.
While I was sitting with all my needles, my acupuncturist talked to a new patient nearby (I go to a community acupuncture clinic so there are several people being treated in the same room). The woman said her pain was a 2-3, and that it was really bad. Linda asked the same question- “That’s bad?” and the woman explained that for her, having pain at a 2 meant that she had difficulty walking which was a big adjustment because she’s a runner.
All of this got me to thinking about pain levels, about how we measure pain, about how we compare ourselves to others based on where we are on that scale. I started thinking about doctors, and how difficult it must be to interpret people’s answers to the pain scale. If I tell my doctor I am at a 2, I will get happy remarks. But there may be others who say they are at a 2 and the doctor needs to be concerned. But how do they know who is who?
It all seems so crazy subjective to me. It’s no wonder that getting diagnosed is difficult when you have chronic pain. It’s almost a guessing game! Maybe doctors should ask patients to create their own pain scales with their own personal descriptions to make it easier to understand each patient. Mine would like something like this
0-1: obviously I am dead because this doesn’t happen
2-3: a pretty good. Some aches and pains, but nothing major
4-5: I hurt. I need pain meds. I am limiting my activities considerably.
6-7: I hurt a lot. I need a steady stream of pain meds, heat, stretching, and I am probably still pretty miserable despite all of that
8-9: Extreme pain that is severely limiting activity; pain unresponsive to medication, heat, etc.
10: I have never ever said I was at a 10 despite years of pain and having 3 babies so if I ever say this, someone should get me to the ER quick because I am clearly dying.
What about you? What’s your pain scale?