We Are In This Together!
Written by Shannon McMullen for the RSDSA blog.
How and when did you develop CRPS/RSD?
I developed CRPS in spring 2018, following multiple ankle sprains that never fully healed. I was cleared to run again by my doctor, but that led to aggressive tendonitis that would not go away. Eventually, I was in a boot and on crutches for some time to try to give my ankle a rest, and after that the CRPS came on. It was very hard to get a diagnosis as the physical therapy place I was going to did not understand why being in the pool was painful (told me to do it anyway) and they did not understand why touching my foot was so painful.
Eventually, we went to another physical therapist who worked tirelessly and tried everything, and I mean everything, to figure out what was going on. Having seen a CRPS patient before, he knew the signs. I will never forget the day he told us that we needed to go someplace big before this got even worse. After that, I did end up in a rehab program for three weeks and I am eternally grateful for the ways Mark and that program helped me get my life back.
What has daily life been like since your diagnosis?
Daily life has been much more exhausting, but also freeing. I have learned not to stress about things in school and worry about grades and perfection. I take less things for granted and spend a lot of time reflecting on my life.
What is one thing you wish those without CRPS/RSD could understand?
CRPS and chronic pain are composed of both physical pain and emotional pain. The physical pain and misunderstanding lead to being lonely and feeling misunderstood, so it does not help when we are ridiculed or not supported. Chronic pain is constant pain, and constant friendship, love, and support go a long way.
What advice would you give to newly diagnosed Warriors?
Don’t give up. You have an opportunity to fight this disease and let it make you stronger, rather than defeat you! Trust that there is a plan and that there are things out there to help. You are not alone and many CRPS warriors would love to talk to you and encourage you!
What advice would you give to Warriors who have had CRPS/RSD for many years?
You are so strong to keep fighting every day and we are in this together!
What activities or treatments have helped you find temporary or long term relief?
The pain program I did, turmeric pills, prayer and spending time with God, DISTRACTION (talking to friends, adult coloring, music, etc.), listening to music, and exercising even if it is just light exercise.
What else would you like to add?
You are not alone and instead of asking “why me,” tell your CRPS “try me” because you are stronger than the CRPS monster! I am so proud of you for continuing to fight! Do not be afraid to ask for help as it does not make you weak, rather it makes you strong! CPRS is a great opportunity to learn how much we need each other!
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