In preparation for my disability exam, I started paying attention to where my pain was. I think being someone who is chronically ill, and with pain being a major factor, the pain signals going to our brain overwhelms our thought process.
I’ve read a number of jokes and memes about how when going to a doctor and the doctor asked where’s your pain those with EDS or lipedema have a comeback, something like “where does it not hurt?”, or maybe “well, my nose doesn’t hurt!” And although descriptions like that are accurate (and therefore funny to us) I feel they don’t make sense to the doctor, and the doctor has trouble comprehending what we’re going through.
Some advice I had received before my disability exam, was to be able to describe my pain. Over the past couple weeks, I would sit back close my eyes to determine where exactly the pain was coming from and how to describe that pain. Personally I was quite shocked at my results and I gained many, many insights.
Let me describe the process a little further. For me, there’s typically the one pain signal that I’m getting from the body. I register “pain”. When I sit back and ask – where is that coming from, I find the one pain signal that is overwhelming the rest. Then I say, “OK – let’s look beyond that pain” to other parts of the body, and I’ll go body part by body part evaluating….
One of my first insights using this technique, my pain isn’t constant in one location – it moves. And although I knew it moved, I thought it was moving day to day. But unless I have an injury, the pain is CONSTANTLY moving to different parts of my body. For instance right now I feel the pain from my fingers, and if I concentrate and look past that, I feel the pain in my elbow joint then as I examine the rest of my body I can feel the right side of my pelvis acting up. I just moved my leg in my right knee had a slight jolt of pain and I also noticed my left ankle, As I breathe I can feel a tightness in my back below my shoulder blades
But now if I change position or move those various limbs, where I experience pain most likely will be in all new places. So now, the pain from my hands is radiating up the outside of my arm up to the elbow, and the fingers are tingling. My neck is tight, and the top of my right shoulder is impacted when I twist my neck. The tightness I felt in my back is gone, and I’ve relieved the pain in my pelvis.
If I get up and walk – I may not notice the pain in my neck any longer, but I’ll now be dealing with pain in feet, knees and wobbly ankles. I really hadn’t realized I had pain in SO many areas, since I was receiving that one overwhelming pain signal.
I’ve found that I tend to try to remain still until the current pain becomes great enough that the possibility of relieving it by shifting overcomes the potential of the new pain that will be experienced in the new location.
All of these insights, honestly, really aren’t new to patients in chronic pain – we “intrinsically” know all of this. (But, I know for myself, I really haven’t put it into words – or acknowledged that I had pain in SO many locations, or that my pain moved — I was just always overwhelmed with the thought of “pain” wherever it came from.) It’s why we remain still, or shift – ask for help when trying to move/ sit-up/ stand or don’t… because we “know” the pain we are moving into, and the pain that we are hoping to leave behind by accomplishing that move.
But I am hoping that putting these things into words will help to explain to those around us and to our doctors who are not in chronic pain what we are feeling to help them understand our pain.
