The Sun Will Rise Again
Written by Juanita Franke for the RSDSA blog.
How and when did you develop CRPS/RSD?
I developed CRPS in October of 2018. While working as a faculty member at Pacific Northwest Ballet and teaching Pilates, I sustained a minor injury to my left knee. I knelt down, heard a ”pop, ” and spent the afternoon icing my knee. By the next day, I could only walk with crutches. Within two days, I started experiencing the swelling, discoloration, and skin temperature differences that I now know to be symptoms of CRPS.
Unfortunately, it took three and a half months for a diagnosis. While I know my diagnosis was relatively quick compared to the averages, it was nonetheless frustrating to endure six weeks of physical therapy, numerous trips to the emergency room, surgery, another six weeks of PT, and still not have a diagnosis. At one point, I thought I was really going crazy!
What has daily life been like since your diagnosis?
Since diagnosis, life has been a roller coaster. I spent a couple of months doing graded motor imagery, mirror therapy, and desensitization work alongside traditional physical therapy, but I still could not walk unassisted, and my pain levels were unchanged. During this time, I added in Emotional Awareness and Expression Therapy (EAET) with a highly skilled psychologist. With his help, I was able to transition off of most medications.
Of course, there also had to be a reckoning with my way of life. I had to quit my jobs, both of which I really loved. I had to give up hiking, camping, and kayaking with my family. Seven months after the onset of my CRPS, my husband and I made the difficult decision to leave our community in Seattle in order to move closer to my parents and sisters.
Life is slowly returning to some kind of equilibrium. I have days where I am able to do all of my activities, run my new crochet business, and walk without my cane. There are days, though, when I can barely get out of bed due to the pain. I am learning to pay attention to my cold foot, the pins and needles in my hip, and the ache in my knee. When I accept the messages my body is sending and pace myself, life goes much more smoothly.
What is one thing you wish those without CRPS/RSD could understand?
I wish people could understand that CRPS is always there, whether I am actively in a flare or not. I wish they could understand that I may need to cancel at the last minute, and I am at least as frustrated as they are. I cannot always do today what I could do yesterday, and if I ignore my body, I will be the worse for it.
What advice would you give to newly diagnosed Warriors?
Hang in there! Find a good physical therapist and a good psychologist. Prioritize your sleep, nutrition, and pacing. Be vulnerable and ask for help. The sun will rise again, though it may not feel like it right now.
What advice would you give to Warriors who have had CRPS/RSD for many years?
I have no advice to give. I am still learning to live with CRPS, and I am amazed at all the wonderful things I see fellow Warriors achieving. This disease may come with added challenges and disappointments, but it does not mean an end to happiness and fulfillment.
What activities or treatments have helped you find temporary or long term relief?
I have found the most relief through buying a new, motorized bed frame. I can raise my legs with ease and take the pressure off. Simply resting with my feet up has been a real game changer.
I have also found relief in changing up my diet. After a Whole30 reset, I found that sugar, dairy, and gluten really contribute to my pain levels. Without these triggers, my pain level is around a 1 or 2 – present but not unbearable. After eating any of them, I found myself relegated to bed with pain levels preventing sleep or rest.
Of course, all of this is just icing on the cake. I could not have reached this place without the help of my physical therapist, psychologist, or pain specialist. Getting good medical care was the real game-changer. They taught me that I still had agency, despite being at the mercy of this disease.
What else would you like to add?
I am so thankful for the Warrior community. Reading articles, blogs, and Instagram captions keep me from feeling so alone on those nights when the burning will not stop long enough for me to get decent sleep.
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