Since my Fibromyaliga has worsened my idea of a “10” on the pain scale has changed dramatically. What I defined as a “ten” five years ago is so far from a “ten” today. I was a pain “baby”. A paper cut would drive me to the point of tears. As my disease has progressed (and yes, it does progress) my pain levels have become so high that it’s hard to arbitrarily assign it a number. When I visit my pain management specialist, she has a form that we use to show her where our pain is. It has a line drawing of a body (front and back) and we are to mark where our pain is and how we rate the intensity of our pain. Most of the time, mine looks like I’m been “coloring” the body with my pencil because there is not one part of my body that does not hurt. There are some areas that are worse than others but for the most part my entire body is racked with pain 24 hours a day, 7 days a week, 365 days a year. The hardest part of answering any questions about my pain level is assigning my pain a numerical rating.
We’ve all heard the “rate your pain on a scale of one to ten with ten being the worse pain you’ve ever experienced.” I often wanted to ask “today”, “this week”, “this month”, “this year”? Some days it could be “what hour”? According to About. Com the Numerical Scale is designed to be used by those over the age of 9. The numerical scale gives the user the option to verbally rate their scale from 0 to 10 or to place a mark on a line indicating their level of pain. 0 indicates the absence of pain, while 10 represents the most intense pain possible. In theory, this Numerical Rating Pain Scale allows the healthcare provider to rate pain as mild, moderate or severe, which can indicate a potential disability level. Pain scales are subjective. Remember when I said I was a pain “baby”? Five years ago I would have said that an ankle sprain was a 10. Comparing that ankle sprain pain to my daily Fibromyalgia pain, Myofascial pain, Chronic Fatigue pain, Neuropathy pain and the pain from my edema when it’s exacerbated knocks it down to a “1”. I have to wonder how “Severe” can cover four numbers? Are there stages of “Severe” that I’ve not heard about?
The Wong Baker Faces Pain Scale combines pictures and numbers to allow pain to be rated by children over the age of 3 and adults. The faces range from a smiling face to a sad, crying face. A numerical rating is assigned to each face, of which there are 6 total. I laughed out loud when I read the notes below the faces. I literally can’t remember the last time my pain was a “2” and forget about a “0”. Like the numerical scale, it’s so subjective. I can’t remember having anything but an “8” or a “10” going by this scale. Believe it or not, I can be at an “8 – Hurts a Whole Lot” and my pain can do their definition of a “4 – Hurts Little More.” It’s not unusual at all for me to be “Hurting a whole lot”, then “Hurt a little more” so that I hurt worse..
Chronic pain suffers need a reliable pain scale to convey to their pain levels to medical providers. When my brain fog isn’t too bad, I like to do research on my illnesses. Recently I came across the fibromyalgia pain scale below at. FM/CFS/ME Resources. This Fibromyalgia Pain Scale gives a “definition” for each number, eliminating the guesswork that is involved when attempting to use the Numerical Rating Pain Scale or the Wong Baker Faces Pain Scale. I’ll be using the FM/CFS/ME scale in my posts.
Here's the FM/CFS/ME pain scale:
Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems.
Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual.
Level 3: Your minor pain is strong enough to get your attention. You resort to Over-the-Counter (OTC) medications.
Level 4: The pain is getting stronger, you are taking more OTC medications but they don't last long. You begin to cut back on your activities in favor of just sitting down.
Level 5: You can't ignore this pain for more than an hour, even with OTC Medications. You cut back of all activities except the most important ones. Work is possible, but just barely.
Level 6: You simply can not ignore your pain for even a few minutes. Prescription pain medications provide you with limited functioning abilities.
Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time. You limit your activities in order of importance. You really can't work well.
Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything. Work is out of the question.
Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.
Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get.
I like this pain scale because I can say that my pain is “only a 3!” Those are the days that I wake up and go “Wow! I feel pretty good” in the way that people without chronic pain would go "I feel awful". It’s on those days that I try to do my errands and get as much housework done as I can without overdoing it. There’s a problem with having a Level 3 day. They are so few and far between that I tend to do as much as I possibly can because I don’t know when I’ll be a Level 3 again. Because of overdoing, a day that starts out a Level 3 can become a Level 6 by the end of the day.
My normal everyday pain level varies from Level 4 to a Level 8. I realize that is a wide range but Fibromyalgia, Chronic Fatigue and Myofascial Pain can cause a wide range of pain. It’s unpredictable and uncontrollable. It can literally change in a 15 minute period. I’m sure as you read my posts over time there will be a day where you’ll see that change. It can change because I over do it or for no reason that I can figure out. It’s life with chronic pain. Throw the peripheral neuropathy in and well… this post is long enough but I’m sure we’ll talk about it soon. That’s just the way my life is.