Ehlers-Danlos Syndrome and Pain

*Disclaimer: I am not a medical professional. I am just a woman, laying on the floor, asking her body what the hell is wrong and how I can fix it.*

After the two years of a seemingly downhill slope of one surgery after another, one injury after another, two years of physical therapy and endless pain, I decided enough is enough and started diving deeper into my research.

Now don’t get me wrong. I am still in physical therapy and my therapist is amazing! But my recent broken ankle was the last straw for me. I knew that I must work to make my whole body stronger or I will only continue to get worse. However I also knew I must find a way to push past the pain. I mean, for any of us to truly treat our bodies right, we have to understand what’s happening with them.

So I became very excited when I learned there were different types of pain and they can all affect us differently throughout our chronic journey. Understanding pain is very important when it comes to EDS. Why? Because once the pain sets in, impaired movement patterns take hold which means decreased activity. With decreased activity, we lose muscle. But with hypermobility, we need muscle for stability.

Kathryn Lister, associate clinic director with Physiotherapy Associates, hosted a webinar sponsored by the Ehlers-Danlos Society in 2015 called Intelligent Exercise. In this incredibly informative video, she outlined how hypermobile bodies work, why they work that way, and how we can work with them with proper, targeted physical therapy and exercise. She gave a detailed review of the three basic types of pain. They are as follows:

Nociceptive Pain

Caused by an injury to body tissues. Most pain is nociceptive pain. It results from stimulation of pain receptors for tissue injury (nociceptors), which are located mostly in the skin or in internal organs.

Nociceptive pain is the type of pain everyone is most familiar with, everything from bee stings and burns and cut finger to broken leg, repetitive strain injury, dental procedures, nausea, and arthritis. 

Neurogenic Pain

A neurological pain syndrome and chronic pain that occurs when your nervous system does not work properly because of a disease or direct damage to a nerve or nerves. With some syndromes, the nerves signal pain even when there is not real feeling of pain.

Main contributors are lack of sleep, depression and anxiety, friends, family and of course pain and dysfunction.

Visceral Referred Pain

This is pain perceived at a location other than the site of the painful stimulus/ origin. It is the result of a network of interconnecting sensory nerves, that supplies many different tissues. When there is an injury at one site in the network it is possible that when the signal is interpreted in the brain signals are experienced in the surrounding nervous tissue.

In other words, the pain you feel in one part of your body is actually caused by pain or injury in another part of your body. For example, an injured pancreas could be causing pain in your back, or a heart attack could be triggering pain in your jaw.

I found this all so interesting and I incredibly enlightening. I now have a little more insight to how I have been impacted by pain and how life and EDS has also played a part in it as well. Now I can take what I have learned and apply it to enhancing functional abilities, rebuilding my quality of life and my strengthening program. But that’s a story for another blog. Stay tuned….

Lister’s video on Intelligent Exercise with all of the above information and more can be viewed on my blog or you can copy the link https://youtu.be/2LC-qUejV_A

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