Language of Nerve Pain

Often when we (patients) seek out a medical professional with pain symptoms, we give simple descriptions, being unable to fully explain what we are going through. “It hurts.” “It burns.” “It tingles.” “It is numb”. While true, these don’t provide much information. The medical professional is left to (hopefully) ask the right questions, but sometimes may simply fill in the blanks based on their experience.

It can be hard for some of us to sit and really think at length about our pain, most of the time we are doing everything we can to avoid thinking about it.  Still, it is a way you can advocate for yourself with your medical team and others by providing that fuller, detailed description about your pain. You can give your medical professionals the information they need while also demonstrating you have thought your symptoms and their impacts through. The attached charts provide more descriptive language to choose from when self-evaluating the pain(s) are you experiencing.

The information you provide to the medical professional should have multiple components:

The goal is to pull all this information together into a concise description.

Examples are listed below to demonstrate how you could practically these lists.  Including an emotional impact may also be valuable particularly when working to help family or friends understand how neuropathy impacts you and your life.

Note: The attached table of language attempts to display similar or related types of pain horizontally in increasing levels of intensity, however this is not always possible.

Examples

1. Shock Pain?
   • Pain words (w/qualifiers & intensity):  I have a strong searing pain, like an electrical shock, but bigger. Its an 8.  When I touch anything metal, I get a strong shiver.
   • Directionality:  It goes from the tip of my toe to the middle of my foot.
   • Time Factor/Frequency: It only lasts a second, but it repeats every 5 or 10 seconds, sometimes for hours.
   • Impact: Each time it happens it is so strong it takes my breath away and makes my whole body convulse.
   • Impact: When it happens, I don’t dare drive, I can’t focus, I can’t think about anything else but making it stop. 
   • What’s been Tried: I’ve tried creams, meditation, massage, ice.  Nothing seems to help.
   • Difference with Change: Sometimes ice will slow it down. Caffeine makes it and other symptoms worse.

• Burning Pain?
  • Pain words (w/qualifiers & intensity):  I have a scalding pain that lingers all day or all night that changes in from a 4 all the way up to a 9. It is extremely sensitive to the touch everywhere I can reach.
  • Directionality:  It is all over my whole left side, my knee to ankle, across the back up to my arm pit.
  • Time Factor/Frequency: It is relentless, it never goes away.
  • Impact: It is very excruciating and debilitating. I am unable to participate in any activities or movement.
  • Impact: I can’t get more than an hour of sleep at a time.
  • What’s been Tried: I take the max allowed Tylenol, and I use Voltaren and other over the counter meds. I am getting ready to try medical cannabis.
  • Difference with Change: I have to stay in one position all the time or risk increasing my pain.

• Tingling or Prickling?
  • Pain words (w/qualifiers & intensity):  I get a lot of tingling in my legs. It is a lot of sharp needle pokes. Starts in my toes and goes up my feet and legs.
  • Directionality:  It goes everywhere on my legs and feet, also on my back and arms and hands.
  • Time Factor/Frequency: It is at least daily, sometimes many times in a day.
  • Impact: I have to pound my feet or toes for 15 to 20 min to get rid of it (if I am somewhere I can even take off my shoes). If I can get my shoes off it is less, but not always. 
  • What’s been Tried: I try movement, rubbing, banging, anything to get circulation going in my feet and legs. LivRelief and walking helps. Walking gets rid of it faster. Applying heat can also help.
  • Difference with Change: NA

Wording Ideas

Time Factor/Frequency & Directionality

Intensity & How it Changes

This resource may be helpful in journaling or preparing for a doctor visit. For this reason we have attached a pdf of the original document this post is based on:

Click Here to view a downloadable version of this post

Your input on the value of this post would be very much appreciated. Please leave a comment if you have feedback or something to add to the list.