The Pain Scale. Really?

My husband and I both require physical therapy for pain and endurance. We have been fortunate enough to become aware of a local program here in the area we live that can send a physical therapist into our home.

Each time our physical therapist visits we are asked what our pain level is on that ridiculous pain scale of 1 to 10. We've learned to become much more aware of what our own levels are at any given time. We have talked extensively with our nurse and our physical therapist about what we think of the pain scale.

It occurred to me today that because we live with chronic pain we are in the unique position to understand the pain scale in a way most people cannot. We are more familiar with the different levels of pain. We are acutely aware of the subtle difference between a level 3 and level 4 of pain. We have learned to reserve levels 9 and 10 for "take my butt to the hospital NOW" pain. We have this understanding because we live in chronic pain and because we are constantly asked to assess the level of pain we are in.

As we discussed all of this we then somehow ended up discussing how people describe their pain. What terms we use and how each of us perceives certain pain. I realized that a person suffering from pain describes that pain much differently than someone who has been trained in a medical field. Someone like my Physical Therapist would not explain a pain in their shoulder the same way that I would. A doctor might describe pain in the lower back differently than someone like me who has not been trained but simply suffers with it all the time. These differences can lead to extreme misunderstandings.

For instance I learned today that the headaches I get, though as severe as a migraine, are not called migraines. I don't remember what he called them. I call them pain induced migraines but there is an actual name for them which means exactly what I call them but leaves the word migraine, which confuses doctors, out of it.

I suffer from pain every day of my life. Some days are worse than others and the pain often moves and changes. I often do not let it show to people outside of my immediate family because it doesn't serve me to do so. I have been trained by doctors and life in general that most people do not want to know how much pain I am really in or they won't believe it when I tell them. I find that it is common for people to believe that someone in pain like mine is exaggerating, when in reality we are usually downplaying the amount of pain we are in.

Today, for instance, my right thigh hurt. It feels like it is bruised but I haven't done anything to it. My shin hurt as well but only if touched. I had pain in my abdomen as if someone was driving knives into both sides just above my hips. If I took a breath that was just a little too deep it felt like spikes driving into my right side and my right shoulder blade in back. I couldn't wear a bra because the pressure on my spine where it touched my back hurt so intensely, it was like needles driving into one vertebrae. It felt like sharpened knitting needles being driven into my shoulder blades on both sides in my back. I could feel my shoulder popping as if it popped in and out, though I know it didn't actually pop out. And I don't even know how to describe the pain in my neck and head. And these were just the worst pains, the minor ones are not worth mentioning.

Most people don't want to know all of that. Even our doctors have trouble believing all of this or understanding it. We live in constant pain but beyond that we live under constant scrutiny and seldom understood or believed.

With all of that in mind, how can a pain scale of 1 to 10 aptly capture our true level of pain? It can't. However, as chronic pain sufferers it is our responsibility to learn to work within this system no matter how inadequate it may be. We easily are more familiar with our own bodies than those who do not live with pain every day because we are unfortunate enough to truly feel every part of our body at some point.

I have spent years complaining about how this system does not work for anyone and certainly not for people who suffer from chronic pain. I have now come to the conclusion that it can work if we MAKE it work, it is simply never explained well enough to those in chronic pain.

Usually we are told that 10 is the worst pain you've ever experienced, but with a chronic pain sufferer that is not a sufficient way to explain this. Chronic pain sufferers need to see this 1 through 10 scale in a whole new manner.

1. YAY! A Pain free moment (ie: of course there is pain but it's thankfully so little that it might as well be pain free)
2. Totally can handle it (ie: like being poked with a knuckle but nothing too terrible)
3. Tolerable if I don't do to much 
4. Tolerable but getting difficult
5. I need my pain meds
6. Might need more than normal medication, and maybe a warm bath.
7. Take meds, lay down, I'd cry if this wasn't so typical to my condition
8. If this gets any worse we might need to go to the Doctor or ER 
9. I need someone to take me to the Doctor or the ER NOW
10. Call and ambulance or rush me to the ER right now!

This still might not be perfect. Feel free to tweak it to your specific needs. Whatever you decide, I encourage you to really get to know your pain and your body and find a way to work within the confines of this pain scale in order to help your medical care providers at least some way to understand you.

Our descriptions of our pain might not always work for our care providers, but if we can find a way to work within the terms they are used to understanding and we can communicate our interpretation to them as well, we have a better chance and receiving the most appropriate care.