Sometimes I get asked, what does it feel like?
Here are a few descriptions of my pain.
- Take a toothpick and stick it into the soft fleshy part of your hand, between the thumb and forefinger. Push down and hold. Keep it there for about 30 minutes. Alternate the severity of the pressure. Sometimes it is like that for a full day for me.
- Do you know when your toes are so cold they are almost blue? Then you take them and stick them in hot water. That burn that is like that all through my spinal column
- My hair hurts my skin. Sometimes the wind will blow my hair against my neck. Most of my life that tickled. Now it feels like someone is taking a red hot curling iron and dragging it across my face and throat
- I get what feels like an electric shocks shooting through my arm. Sometimes down my spine.
- Swallowing hurts. You know when you are dehydrated and you finally get some water. It takes a few swallows to get it down because your throat is dry. It feels like that for me, but it is more like someone has their thumb pressed against my throat, choking me.
- Burning, my spinal column feels like acid being pumped up and down all day, every day.
- Warm rushes; sometimes I think “oops” and I look down to see if I have spilled warm water on myself. There is nothing there.
I have other kinds of pain, but these are some that I am unable to control. I can’t change my position to make it better and medication doesn’t get rid of it. Sometimes I find it helpful to hear that I am not alone. I am not sure if anyone else out there wants to share a story, but it is helpful to know I am not crazy?