Today I am chatting with Shana Kagan, founder of Jedi Tedi about her son’s Complex Regional Pain Syndrome diagnosis.

Since November is CRPS Awareness Month, I thought I would help shed a little more light on Complex Regional Pain Syndrome. This is something that my son was unfortunately diagnosed with this time last year after a competitive soccer injury. After days of not being able to bear weight on his leg after the injury, we saw a local sports medicine doctor who x-rayed my son’s leg. Although swollen, he did not find any significant injury: certainly nothing that would cause the amount of pain he was in. An MRI came back clear as well...

In the doctor’s office, after the MRI, we were given a diagnosis of CRPS. For my son, the symptoms were pain disproportionate to the initial injury, inability to bear weight on his right leg, inability to bear any contact with his right leg and cold to the touch body temperature below the affected knee. We were sent on our way and told to let the doctor know if he didn’t get better in 6 weeks at which time we would be sent to the pain clinic at our local children’s hospital.

For my son, his pain lifted about a week and a half after his injury and although he has experienced a handful of “flare ups” over the past year, it is not something that we are dealing with chronically. While I am grateful for my own son’s recovery, other patients are not as lucky.
It seemed important to bring more awareness to this not only for the sake of those currently suffering, but as a reminder that you never quite know what it’s like in someone else’s shoes. And you certainly can’t judge a book by its cover.

Recommended Resources:
• Know someone with CRPS or want to donate to Jedi Tedi? Find out more information at jeditedi.net or follow Jedi on Facebook
• Visit the RSDSA for more information about CRPS in youth
• Need help with your child’s chronic pain? Check out Conquering Your Child’s Pain by Lonnie Zeltzer

Timestamps:
• What is CRPS? (4:23)
• The Struggle to get Diagnosed (7:33)
• Prognosis (9:14)
• Pain Levels (10:49)
• Let’s Not Judge (12:58)
• Treatments (15:54)
• Therapies (22:34)
• Giving Back (29:20)

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