Awareness Will One Day Bring Us a Cure
Written by Shannon Beckman for the RSDSA blog.
In 2009, I was at a concert to see my favorite band. I was downstairs and I heard the music start so I ran up the stairs in my flip flops. I stumbled and ended up falling backwards, landing on the step behind me, and hyperextending my big toe. While I was in a lot of pain in the days that followed, I heard from everyone that, “There is nothing you can do for a broken toe” and hoped it would heal on its own. It began to get worse and eventually I ended up in a walking boot, with instructions to ice it frequently for six weeks.
As weeks went by, the pain got increasingly worse and the symptoms got stranger. My entire foot rotated between a bright red, angry color and a pale, purple shade. I began to experience shooting pains up my leg and every inch of my foot began to feel the intense pain that RSD/CRPS patients know so well. After three months of boots, foot apparatuses and pleading with the doctor that, “This pain is not normal,” I was sent to a foot specialist. Instantly when he felt the ice cold temperature of my foot and saw the purple coloring, he diagnosed me with RSD.
I will never erase from my mind my first day of physical therapy. They started with desensitization and I remember crying in pain as the PT ran a Kleenex over my foot. Slowly, we worked our way up to a towel, sandpaper, massage, and beyond. Over the course of the next year it was a constant attempt to figure out something that would stop or slow the RSD’s progression. I did at least 12 nerve blocks, physical therapy, and was on a heavy load of medications. I had been an athlete all my life. I loved running more than anything and thrived on pushing myself to physical limits. Now, I could barely walk and could not even sleep under a sheet because of the sensitivity. I dreaded car rides, because the vibrations of the car brought me such intense pain. The pain eventually began to work its way up into my lower leg and into my other limb.
As my fellow RSD/CRPS sufferers know, this type of pain can not be fully explained. There is the reason why it is positioned at the top of all Pain Indexes. The most accurate description I have ever heard of RSD/CRPS is that, “Someone has set your veins on fire.” There is no relief and no real end in sight. It is physically and mentally exhausting. I was in my last year of graduate school and trying my best to juggle life as a newly diagnosed RSD patient while attempting to live a seemingly normal life on the outside.
In the summer of 2011, My husband and I got a huge surprise. We were going to be parents. Due to some issues in my medical history, doctors had always told me that my odds of having a child without fertility help were slim. As happily surprised as I was, my initial response to the pregnancy was fear. I had been on a prescribed cocktail of Lyrica, Savella, a clonidine patch, and several other medications. I had also recently had a nerve block and a DEXA scan, all of which are contraindicated in pregnancy. My fears for the baby were also coupled with fears for myself. If I was in this much pain with medication, how in the world could I function without them? What would the extra weight do? It was a complex series of emotions running through our family.
My fears slowly eased, however, as my pain drastically improved throughout the pregnancy. Even though pain was still there, it was almost like getting to go back to the time before the awful disease had struck. I knew that the increased hormones were probably helping my cause and that more than likely the pain would return after pregnancy, but I was thankful for a few months of relief.
Our perfectly healthy daughter, Ally, was born on March 14th, 2012. And call it luck, hormones, or my own personal miracle, RSD pain returned, but in a much milder form. I know that all parents share unique bonds with their children, but I will forever be so thankful for the little one that brought me out of the dark shadows of this difficult disorder. Had the horrible pain from RSD continued, my life would still be overflowing with joy due to our amazing little girl. But something about carrying her allowed my foot to be healed, and for that I will always be grateful.
For the past eight years, I have continued to deal with RSD, although in a milder form than many of our RSD/CRPS Warriors. I do have pain everyday and I have to be very careful to take care of my foot. Something as simple as a blister, a stepped on Lego, or a falling can of tomatoes can send it into a flare that takes weeks or months to recover from. Cold weather is especially rough and keeping my feet warm during the winter season is vital.
Although my RSD still presents me with challenges, it is not lost on me how lucky I am that my condition is where it is. There are thousands who suffer in pain daily and my heart breaks for each and every person that struggles and is diagnosed. To the newly diagnosed patient, my advice would be “Do not lose hope!” I am an example of a young person that actually improved over time, even when it all seemed hopeless. A quote that helped me through my most difficult days was from actor Michael J. Fox. When asked about his challenges with Parkinson’s disease, he responded, “I’ve accepted that this is my situation, but I’m not resigned that it has to be this way always.” Try and wake up everyday with the belief that today could be better than the day before.
To those RSD/CRPS Warriors actively struggling with this disease, thank you for sharing your stories. This community has helped so many people, regardless of the stage they are in, learn and grow in pursuit of better mental and physical health. The stories raise awareness; the awareness will one day hopefully bring us a cure.
To the caregivers and loved ones, Thank You. Watching someone you love in pain is excruciating. When a patient is diagnosed with RSD, everyone around them is affected. My husband, Keith, has been so good to me throughout this journey. I could not have tackled this road on my own.
To all my fellow RSD survivors (and you ARE a survivor if you have made it this far), please remember you are SEEN, you are LOVED, and you are NEVER alone. 🧡
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