Written by Abby Sams for the RSDSA blog.
My name is Abby Sams and I was diagnosed with RSD/CRPS at age 19, over seven years after its official development.
When I was 12, I injured my knees playing with friends and myself, my family, and my doctors all agreed it was likely a growing pain situation, or a simple “runners’ knee” that would clear itself up eventually. I ended up having to wear knee braces almost constantly for several years. My skin was purple, and my knees and thighs hurt to touch. I hated pants and always opted for our uniform skirts or shorts even during the winter. My daily life since diagnosis has changed tremendously.
Now that I have answers I am able to do physical therapy at home and be more active in ways that suit my needs without having to worry about further injury. I am a wheelchair racer and college student and I able to deeply enjoy both of those things and many others even with RSD.
I wish people could understand how good RSD/CRPS patients get at hiding their pain. RSD/CRPS pain is rated one of the most painful things a human being can experience on the McGill Pain Scale, but when you are living with that constant pain for years on end you learn how to hide it or push through it rather easily which often leads to people without RSD/CRPS not believing just how bad it is.
However, if I could tell a newly diagnosed warrior anything it would be to keep going. I know it sounds cliché but that’s it. Some days are going to be so much worse than others and it can feel like there is no light at the end of the tunnel or no end at all but it does get easier even if it does not get better and that is worth fighting for.
For long term RSD/CRPS warriors, I would tell y’all that I am here for you, I know what you are going through and you are not alone. I know sometimes it feels like there are just a million things going on and nobody gets it, but we get it. This amazing community of people is here for you, ready to fight for you and support you.
As someone who the spinal cord stimulator, nerve blocks, and ketamine infusions did not work for and were not options, the best treatment I have found for myself has been physical activity. It started as just moving my knees gently through squats or lunges, maybe just two or three a day. Then over the years it was walking every day even just down to my mailbox and back. As a patient that also has Ehlers-Danlos Syndrome and a multitude of other chronic illnesses, I have found that even being in my wheelchair and doing wheelchair racing has improved my pain in my legs. Getting that circulation flowing in spaces other than my legs has proven to benefit my whole body. It’s the little things that can make big differences, so don’t underestimate their power.
Keep fighting friends,
Abby
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