While there are MANY secondary conditions related to SCI, I wanted to highlight a few of the most common and the ones I have experienced with my own injury. These secondary conditions can often be more frustrating than the paralysis itself. Over the course of the next few blog posts, I’ll be highlighting some of these secondary conditions.
Neurogenic pain occurs when there is a disruption in the transmission of nerve signals from the body to the brain and can manifest itself into the sensation of pain. This type of pain exists below the injury site and can be experienced by both incomplete SCI and complete SCI. Even for those who have little to no feeling due to their SCI, they still may feel this type of pain!
Imagine you’ve gone out in the cold and your fingers and toes are so cold they feel numb. You run them under warm water to get the blood circulating. When you’re warming up you feel intense “pins and needles” or a “burning” sensation.
Imagine a time when your leg or arm has “fallen asleep” because you crossed your legs too long, slept on your arm, etc. as your limb is waking up you feel intense “pins and needles” or “burning” sensation.
For many of us with SCI this “pins and needle” or “burning” sensation is everywhere, or in select areas of our body below the level of injury. It doesn’t go away, we live with it 24/7. It can range from annoying all the way up to severe. Certain activities, temperatures, infections, etc… can cause it to become much worse!
Medications exist to dull the sensation, but there are side effects: Brain fog, dizziness, fatigue, short-term memory loss, inability to focus, and dry mouth, just to name a few. While medication can be helpful, it doesn’t completely eliminate the pain. We learn to live with it, but at times it can take over and keep us in bed all day.
My C5 incomplete injury causes severe neuropathy from just under my shoulders down. It is worse when I am tired, have an infection, get too hot, or am stressed. I take Neurontin to dull the pain, but it never goes away.
I want to stress to all the readers that this is NOT a “poor me, pity me” post. This is meant to bring awareness to the many other things people with SCI deal with on top of paralysis or partial paralysis. Even those of us that can stand up or walk with or without assistance have to deal with these somewhat invisible secondary conditions on a day-to-day basis.
Illustration By Amanda Russell
In 2013 I was in a car accident resulting in an incomplete C5/6 SCI. I recently received my Master’s degree in nursing from University of Michigan and am working on my Doctorate in nursing practice. I’m passionate about changing healthcare for people with disabilities using education and awareness. I live in Oregon with my husband and 3 dogs. We participate in activities like skiing, kayaking, biking & ATV’s! Every summer we explore the country in an adaptive RV.