Why I Created My Own Pain and Fatigue Scale for My Psoriatic Arthritis
Pain is subjective. Some of us can handle it in high amounts, while others wince at the slightest twinge of it. Those of us who have a chronic-pain condition like psoriatic arthritis are so used to the presence of pain in our lives that we often build up a higher tolerance to it, making it difficult to convey our pain levels to others.
A few years ago, my friend and patient leader Carly Medosch, presented at Stanford Medicine X in a session on how chronically ill patients don't necessarily match up to the standard pain scale that doctors use. She asked me to help in the research of her presentation by sharing my own daily pain experience. I took photos of myself on different days with varying levels of pain. You may be surprised by some of the numbers attributed to the photos.
Back then, a pain level of 5 on a scale from 1 to 10 was a normal occurrence for me. I was used to it and able to function decently, so many doctors didn't necessarily believe I was in constant pain. To them, I looked normal and seemed to be functioning like a regular human being.
I ended up getting to a point where I didn't feel like I was being taken seriously and I knew I had to take my health into my own hands. So I began tracking my own symptoms to try to unlock my health and the results ended up astounding me.
I started thinking about my days and how pain and fatigue affected my activities, my mood, my energy, my sleep patterns, etc., and from there I assigned descriptions to each number.
My pain and fatigue scale ended up looking something like this:
0 - No Fatigue or Pain
1 - Activities are barely impacted
2 - Activities are slightly impacted, but I don't really give it a second thought. I can run errands, for example, without stopping.
3 - Activities are slightly impacted I can run errands, but consciously need to not overdo it.
4 - Activities are somewhat impacted; I can run errands, but when I get home I need to rest.
5 - Activities are impacted and fatigue/pain must be factored in. Running errands might require slowing down, sitting at times or even using a wheelchair.
6 - I'm not leaving the house unless I have to. I can do activities around the house, but I'm moving slowly and lying down often.
7 - Minimal movement from bed; fatigue causes nausea
8 - Activities severely affected, minimal movements, and fatigue keeps my eyes closed
9 - Can't stop shaking from the pain, causes sleeplessness and/or sleeping so much that I can't wake up
10 - Coma; unbearable pain
Having a pain scale that was specific to me, I knew I would always be ranking my pain and fatigue consistently. This really helped me convey accurate pain and fatigue levels to my rheumatologist and pain-management doctor. They appreciated the extra mile I went to have a scale in place, and because of it, they began taking me more seriously.
Each day I ranked my pain and fatigue in the morning and in the evening. After a while of collecting data on myself, I began to easily draw conclusions on how my food, activities, and other triggers were influencing my pain and fatigue. It's so incredibly important for you to track your symptoms because it can truly help you get a handle on your condition and get you on the path to living your best life!