Tuesday, May 19, 2015

The Pain Scale Or The One Where My Husband Has a Higher Number Than I Do, Say What?

The last three times I've been in the ER I have called out low numbers on the pain scale. You know that stupid scale with the smiley faces on it, and when you're in 10 out of 10 pain you have a frowny face? Um yeah, if I’m 10 out of 10, frowning is not the only thing I will be doing. There might be a little thrashing and maybe some moaning going on too. Honestly, when I get up that high I get scarily silent. I figure if I make too much noise my head might explode and I don’t want any brain cells escaping (I can't afford to lose the few brain fog still affords me). I ended up in the ER because my jaw pain was so bad that I realized if I stayed home that night it was very likely that I would OD. I could not get ahead of the pain and I had taken every med I had and couldn't take more without potential for killing myself (as a layperson I knew there were other options, they just existed at the hospital). I went into the ER with chest pain and jaw/face pain. They asked me what my number is and I 7’d.

After the number came out of my mouth, I wanted to say, “no wait!” There are no take backs in pain numbers. Thankfully, I had a doctor that I had seen before and she knew I was not ok. She brought the x-ray machine into my room for me so I wouldn't have to move. I waited 3 hours and I had just said to my husband if they don’t give me something soon, I’m going to lose my marbles and that’s when they offered me morphine. I got the usual brick wall that comes along with it but I was shocked to find that it didn't even touch my pain. So I did what all smart patients in pain do, I suffered. I was not asking for more pain meds, I don’t want anyone to think I’m a drug addict. Again she came in and said to me are the drugs working and finally I gave in and said no and that I was shocked. It took 3 times the normal dose they usually give me and even then the jaw pain was still in the background. I was shocked, they ended up keeping me that night for observation on my heart, we had been told I was going home so I was kind of surprised. When I woke up in the morning still hurting they decided no more meds (that’s a story for a different time).

You may be wondering what this post is all about, I’m horrible with calling pain numbers. To me, a 10 is dying in the hospital, which was kind of what I was close to doing so why didn't a 10 naturally come out of my mouth? Was I being tough, more than likely stupid. My husband told me that he wanted to shake me when I said 7, (I told him I appreciated the fact he didn't I hurt enough already) he also said he wished he could have corrected me. Imagine my surprise when one day I asked my husband about his pain number for his knees (he has OA in both knees and most likely will need surgery to clean them out at some point). He looked me in the eye and 5’d me, I was so angry I called him a pansy. So, you want to know why, right? We each have a number we are every day, well I do anyway. I’m a 5 every day, when I wake up at least one thing or more hurts me and I start my day at a 5 and usually get worse from there depending on what I do, how much pain meds I take and the weather. My husband saying five was truly like a kick in the teeth knowing that I deal with that every day. Comparing excruciating jaw pain with knee pain, I don’t know I thought it wasn't fair, or a good comparison. Alright, I was being a brat. I stomped off into the other room and sat down and stewed for a bit, how could he be so hurtful?

I did what I always do, I started trouble. I went to my RheumaGram group and asked all of my groupies to ask their spouse what their pain numbers were. Holy cow, we were all in for a big surprise. Most of the SO’s had very high numbers for back pain, foot pain, fibromyalgia and other health issues. At first we were all like “oh hell no” but then we realized a couple of things, our spouses have pain that we didn't know about and some of it pretty significant and the other that the pain scale is really broken. If my RA pain was a 5 and it was including 4 or 5 parts of my body and organ involvement and my husband was a 5 for OA in his knees, well you can see the comparison doesn't really play out. People with chronic illness either try to play down their pain level or they keep those higher numbers for extreme issues. I did what I do again, I asked my FB page, “what is a 10?’ What makes you utter a 10 in the ER ? The answer again surprised me, two people answered and they both said the same thing, 10 is close to death, when I am close to dying I consider that a 10, in the hospital fading. When I really think about it even when I hurt so bady that I really was worried about my sanity I still didn't call out a 10 because I didn't believe I was going to die. Go crazy, maybe but not die.
There were quite a few spouse’s that 10’d, which made me realize their problems were injuries or issues that needed to be addressed by doctoring or adjusting footwear, having injections or new medication. These things were for the most part fixable, they had an endpoint and most of them didn't end in deformity and unemployment/disability. That’s why there wasn't that stigma of calling that 10 out. When you have RA you don’t get to call a 10 for everything unless you want to be called Chicken Little or a hypochondriac.

I have always disliked the smiley face pain scale. Seriously, what is a 5? Your 5 might be excruciating while my 5 is every day pain. Is my doctor’s 5 like my 5? Does he realize there is an Autoimmune/Chronic Illness 5 and a healthy person 5? Oh, but the smiley faces say so much more. Uhm, no they don’t. I was smiling and joking with the doctor in the ER that night, she looked passed that into the pain in my eyes. She got that I was not ok, even if I was tap dancing as hard as I could to act like things were groovy. The pain scale is broken, I've obviously identified that by now, how can we fix it? Again, me being me I did a search on pain scales. Wow, there are a ton of them out there, some really decent ones that have been researched by both companies and patients (give the patient a voice when it comes to their pain, imagine). It’s interesting, not one of those pain scales have numbers, they have questions because patients and pain aren't numbers. We’re feelings and emotions and pain comes with a lot of both of these things. You can ask me what number I’m at, or say how does not being able to walk affect your life? You'll get a lot more information from me when I tell you I can’t grocery shop rather than I say my all over pain is 5. Where and what does that number mean? But if I say I can’t grocery shop you know it’s my ankle, it’s affecting my home life and my ability to take care of my family so it’s affecting me emotionally too. That is a heck of a lot more tangible than saying 5.

I found a scale that I really liked and I plan on using it with my own doctors (whether this will work in an ER would probably be more difficult, they don’t want your life story but a quick and dirty number, remember to go one number higher than you think, you will be using the autoimmune/chronic illness scale). When I can lay hands on it, I will include it in this post.

We aren't numbers, we have names, emotions and feelings and sometimes those feelings are pain. We need to find a better way to communicate with our doctors. Our loved ones have no problem stating their pain and being understood, we need to stop being so hard on ourselves, we need to start talking. We need to use words to explain our pain, and we need to be heard. I know I will be making some changes when it comes to the way I express my pain from here on out and nary a number or a smiley face shall be found. I hope numbers will also go back to solving math problems or a really good run at the craps table in Las Vegas. As for our pain, it needs WORDS.


Nicole Jones said...

I hate the pain scale!! I absolutely agree that it is not the same for a normal person versus a chronic person! And you are right! There are days when going to the grocery store is not a possibility. Or days that I do go to the store and then have to sit in my car and cry for a half hour before I can get home and carry them in and put them away. There are days I can't go to work if I don't have pain meds. It would be much easier to explain the pain in those terms!

Cynthia Bowers said...

The pain scale can certainly be problematic, but I appreciate that it encourages us to rethink our own perspective and biases. I'm glad to hear that you and your husband were able to work through your issues and understand that not everyone's pain is the same. Hopefully, the pain scale will be adapted in the future to account for this.

Cynthia Bowers @ Bay Area TMJ & Sleep Center