Category Archives: Feature stories

Guest Post: “The Party Never Stops”

By Antonia Sinibaldi, an Ambassador for SPINALpedia

If you are or know someone that is new to SPINALpedia or new to spinal cord injury, this article may answer some of your questions. One amazing thing that comes with having a spinal cord injury is nerve pain. For those of you who do not suffer from any type of neuropathy, you’re missing out on a huge party. And the party gets hotter depending on how severe your injury is. Not everybody can be invited. You have to be a VIP.

Here are it’s definitions:

Neuropathy is a disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.

Neuralgia is intense, typically intermittent pain along the course of a nerve, especially in the head or face.

Peripheral neuropathy is weakness, numbness, and pain from nerve damage, usually in the hands and feet.

I had my accident when I was 2 years old. All I’ve ever known is life with this injury. One thing I notice is that my nerve pain, which causes spasticity, gets worse the older I get. I am not just sensitive to touch, I am also very sensitive to vibration. Vibration bothers me when I am driving in my van more so than at a party or an outing. One way I can describe to you what it is like living with pain and sensitivity is, imagine your body feels like it has ants all over it and those ants have prickles like porcupines. The body is confused and the problem with spinal cord injuries are that the signals in the body are not properly working or being received.

Some people explain this nerve pain as stabbing. There is not just one symptom, or medication to this issue. There is not just one resolution to the problem either. It’s a plethora of options. Exercise is very important for people with spinal cord injury. Think about it this way, the body is trying to move but the signal is not allowing that to happen in the proper way. That’s why exercise is so important. The human body needs to move no matter what. Exercise for me is a double edged sword. When I exercise I spasm and when I don’t exercise I spasm. However spasming after exercising feels better than when I do not exercise. It feels good to move and stretch.

The signal from the nerve pain does not feel as bad after exercising. That is not just me, there are other people with spinal cord injury that have similar results with exercise. Aside from exercise, there are other ways to manage pain. Diet and medication are important for pain management too. There’s food that is good for the nervous system. Trust me, I’ve done my research. I know what I’m talking about. Over exerting the body can increase pain; nerve pain, spasticity, clonus, and rigidity.

I know that the thought of “I can’t do this anymore” comes to mind often when you have a spinal cord injury. No matter how long you have had the injury, it is nearly impossible not to have that thought sometimes. That’s why I am writing about it now. It is not easy to find writings from the patient’s point of view, it is usually the doctors documenting about spinal cord injury.

That is why SPINALpedia is fantastic! All the writings are from people with injuries or close caregivers. It is helpful to hear and read other people’s stories. It really does get better over time.

To read all about Antonia, plus our other Ambassadors, visit our Ambassador page

SPINALpedia Summer Newsletter 2018

  • Follow this research at Boston Children’s here

  • Follow the research at BioArctic here

  • Follow the research at King’s College London here