Hello everyone!! My name is Zipporah and this is my fibromyalgia blog (including other chronic pain disorders). I have had fibromyalgia for about 7 years now and, before that, I had complex regional pain syndrome (also known as reflex sympathetic dystrophy) for 4 years.
I was only in my early teens when CRPS/RSD developed in my knees without rhyme or reason. Before that, I had been an active, sporty and outdoorsy kid. But I soon realized it was no longer possible to pursue my love of running track or to even participate in gym class at school. Year by agonizing year my knee pain grew worse, starting in my right knee, then moving to my left, and eventually spreading up and down my legs. I walked with difficulty, could hardly bear wearing pants let alone having someone touch my knees, and considered cold temperatures and AC the embodiments of evil as they instantly increased my pain. I was put on pain medications, narcotics and antidepressants only to have them not work, to eventually build up a tolerance to them, or to suffer problematic side effects such as night terrors. A year after developing CRPS/RSD, I even underwent a nerve block by spinal epidural. It helped, but my continually worsening pain soon overrode it.
Eventually, I plateaued; my pain had an average level that only worsened with exertion or cold or when I had a flare-up that transported my average pain level to new and irreversible heights. So, I learned to survive by avoiding these things and by taking “as needed” pain medications to carry me through the flare-ups and the adjustment to a new pain level. Doctors could not offer any other explanations or new ideas so my mother stopped taking me to them and we did what we could on our own to manage my disorder and still give me some quality of life.
With each flare-up, my pain would also spread further up my body and finally, with a severe flare-up in 2007, it began affecting me from my neck down to my legs. We did not realize this at the time, but my CRPS/RSD had morphed into fibromyalgia. I had begun to use a wheelchair to get around school, but I still tried to walk some of the time. At some point, I began taking Lyrica and it took the edge off enough for me to reserve my wheelchair only for times where I expected a lot of walking. With Jehovah God’s help and a strong determination, I was able to go on student trips to Israel in 2008, where I kept from using my wheelchair even once, and to France in 2009, on which I did not even take my wheelchair. I even worked at a grocery store to make money for my trip to France, standing for 6 hours at a time! It seemed that I had found some kind of equilibrium despite continuing flare-ups and worsening pain.
But then, I began college (which, with negligible job experience and an inability to stand, walk or even sit for long periods of time again and again, seemed my best chance at snagging a job). The size of the campus prompted me to again begin using my wheelchair, eventually “upgrading” to a motorized scooter due to the strain on my arms. I began feeling worse, less able to maintain the truce I had with my pain, and was confused by changes in its behavior and increasing unpredictability. I started seeing a doctor again and increased my Lyrica. A visit to a pain specialist in 2011 confirmed the suspicion I had had for a few years–I had fibromyalgia. On the firm advice of the specialist, I stopped using my scooter and made myself walk around campus again. Lo and behold, I could walk longer distances and not die from the effort!! I demoted the scooter to backup and pushed myself to walk as much as possible.
I had my worst setback in the winter of 2012, when I slipped on some ice and fell on my left hip and side. Until that point, my pain had usually been worse in my right leg. Right after it happened, I felt jarred, but not too damaged. I knew that sometimes the real pain had a delayed reaction, so I filled up my tub and began soaking. Within minutes, the pain in my hip was growing worse and became so severe that I had to call my mother to help me out of the tub and go to the hospital. For the next month and a half I learned the true meaning of the word “housebound”! I only left my mother’s bed (my room was on the second floor of our townhouse, too far from the kitchen and my mother) to slowly, stiffly and painfully limp to the bathroom and kept myself doped up on Dilaudid, Percocet and Flexiril. Eventually, I began leaving the house and started physical therapy to recover. The benefit I gained from physical therapy, and additionally warm pool therapy, opened my eyes. I was prejudiced against physical therapy because when I first got CRPS/RSD, I was sent there and was forced to suffer through manipulation of my legs and “desensitizing” exercises that actually worsened my condition. But this new experience showed me that I needed to throw off such prejudice and begin taking better care of myself.
From then on, I determined to pursue better and more active management of my health. It has been slow-going, but I am making progress and I would like to share this journey with other chronic pain sufferers, especially other young women with juvenile fibromyalgia. And so, my blog is born! With it, I hope to show all of the chronic pain sufferers out there, particularly us women, that they are not alone and that stagnation is not necessary. I, myself, have only just started truly taking care of my health and I want to help others who are new to their pain or who are new to properly managing their pain. Follow along as I struggle to learn how to handle my Fibromyalgia, offering commiseration, encouragement, information and tips along the way!