Originally appearing on the Unchargeables, this article has been reprinted in it’s entirety with permission. The original can be viewed here.
My name is Capricious. I’m 46 and I live among the rolling bluegrass hills of Kentucky.
I took the name Capricious after decades of being forced to constantly compromise and change plans. What I wanted to accomplish never quite lined up with my capabilities, making it appear that I was fickle or impulsive to the outside world.
I was diagnosed with the rare genetic disorder known as Hypermobile Ehlers-Danlos Syndrome (hEDS) less than a year ago. Ehlers-Danlos Syndrome is a disorder which affects the body’s production of collagen and can affect everything from the joints and skin to bones and organs, as collagen provides a matrix for almost every material making up the human body. I searched 19 years for answers about what was wrong with my body and visited dozens of doctors. In the early years, I was often told to lose a few pounds and exercise more, that my pain couldn’t possibly be that bad, and was sometimes accused of somatization.
Eventually, as my condition grew more severe and the problems too obvious to ignore by doctors, I was diagnosed with a kidney disease called focal segmental glomerulosclerosis (now in remission), degenerative disc disease, carpal tunnel syndrome, fibromyalgia, chronic fatigue syndrome (ME/CFS), a form of dysautonomia common to EDS called Postural Orthostatic Tachycardia Syndrome (POTS), osteoarthritis, irritable bowel syndrome (IBS), Gastroesophageal Reflux Disorder (GERD), severe chronic migraine, tension headaches, cluster headaches, endometriosis and polycystic ovarian syndrome (PCOS). Since my diagnosis with EDS, I’ve also been working on obtaining diagnoses and help for the additional comorbid conditions of gastroparesis and a Mast Cell Activation Disorder, for which I clearly meet the clinical criteria.
Uncomfortable with my initial diagnoses of fibromyalgia and ME/CFS and convinced they didn’t fully explain my experiences, I was always on the lookout for other explanations. I had a lifetime of issues that only got worse with age. This didn’t seem to be true of most of the other ME/CFS and fibro patients I knew or read about who had a sudden onset of symptoms.
Early Onset of Symptoms
For me, everything started in my early teens, which I now know is quite typical of EDS “zebras.” Even before that, I was a sickly child, frequently fighting systemic infections and viruses, often struggling with allergies to body care products, perfumes and cleaning products. As a teen, I battled insomnia, fatigue and pain in my legs and feet, lower back pain, and headaches. I had a lot of stomach issues and my allergies grew worse. My periods were unbearable, with terrible cramping, hormonal fluctuations, migraines, and alarmingly heavy flows. At 19, I herniated two discs in my spine lifting a patient, only I didn’t know I had because doctors refused to do any imaging until I was in my mid-30’s, always telling me my pain couldn’t be that bad.
By my early 20’s, I found working on my feet excruciating and exhausting. I went to school to try to escape manual labor and customer service positions. While in school, I tore my Achilles tendon walking up stairs at a leisurely pace. I thought this very strange, but no one else seemed to care. Or perhaps they simply didn’t believe me, even though by then I’d had tendonitis in almost every major joint in my body. I had odd pains all over. Sometimes my joints didn’t work right and would pop and throb. It was many years before I discovered that these were subluxations, the close cousin of dislocations. The joint is still somewhat operational, but not quite in place.
Before graduating in 2003, I was diagnosed with kidney disease and started having my first symptoms of dysautonomia; heat intolerance and hydration issues which caused me to have heat stroke at an amusement park and a near heart attack during the flu. My gastrointestinal problems became chronic and I began taking prescription medication for my GERD.
I was accepted to a graduate program at the University of Cincinnati and provided with a Presidential Fellowship for my academic work. I started the fall of 2003, as I was already 30 and didn’t want to delay my career any longer than necessary. My dreams were all coming true and I was excited to embrace this next phase in my life. But I was utterly defeated within 3 weeks by the terrain of the Appalachian foothills. It seemed every class I took or taught was uphill from the last and I didn’t have the energy to walk that campus and compete as a graduate student and teaching assistant. I was forced to withdraw.
I returned to work for a company I had temped for through most of the summer. I became the executive assistant to the Vice president, a grueling and stressful position that demanded much of me both physically and intellectually and my time was entirely the VP’s. It mattered not if it was 3am or 3pm. I crashed under the weight of the physical and emotional stress and took a part time job while trying to grow a business in real estate, but both were too physical and demanding and I soon took another administrative position, this time in Human Resources with a small company. Each move appeared whimsical and strange to the outside observer, but each was to accommodate my ever growing list of health problems.
Total Disability without Diagnosis
My kidney disease resolved, but the fatigue, heat intolerance and ‘chronic dehydration’ issues did not. Despite working out, eating well and taking the best care of my body in my life, my digestive system eroded, my injuries only compiled and my back pain became constant and severe. I began having migraines at least weekly and my insomnia was a near constant companion. In late 2008, when my back pain changed and became so severe I could barely walk, I was forced to leave regular employment. I finally had surgery after much delay in late 2009.
Instead of returning to work after my surgery and recovery in 2010 as expected, I found that I was left with all over body pain, worse fatigue and the migraines that sometimes bothered me had become frequent visitors. My undiagnosed POTS had grown so severe that I collapsed in the post office in 2012 and after that, I was always at risk on my feet.
By 2013, I spent so much time with severe migraines, dizziness, nausea and vomiting, I was spending more time in my bed than anywhere else. Sometimes, my migraines would last for several days, completely unresponsive to meds, leaving me powerless to do anything but lie in a dark room with a bucket beside me. Simply standing would bring on waves of nausea and dizziness. If I raised my hands to get a dish from the cupboard, most days I would end up on the floor.
By 2015, I could hardly leave my own room unassisted and I didn’t really want to. My head pain was constant, my eyes so light sensitive I couldn’t bear to look at a computer or phone screen and my memory and concentration so poor I couldn’t even read. I languished in that bed, usually unable to sleep due to severe insomnia and pain, for weeks at a time. I was constantly plagued by subluxations, muscle spasms, and had developed tremors and yips. I vomited regularly. My body was on fire and I was under constant attack by strange symptoms. I had few drugs to help me through.
Desperate for Answers
Since I am allergic to or intolerant of most pain relievers and neuropathic drugs, I was denied sufficient pain relief. All I had to rely on was Advil, a mild muscle relaxer, and my triptans. In the face of the kind of pain I was dealing with, these treatments were laughable. By 2015, I was determined to make up for all the ways modern medicine and my doctors had failed me. I was determined to find viable treatments and prove the doctors wrong by figuring out what was really wrong with me and do everything in my power to get better.
Every moment that I could bear was spent at a computer researching and reading, trying to discover things that would help me crawl out of the deep well of pain I was trapped in and the origin of my problems. I discovered POTS and helped my doctor figure out who to send me to for diagnosis. I found antioxidants and natural pain relievers that helped some, but I never found a viable diagnosis, try as I might. I eventually learned about EDS through an awareness meme shared by a Facebook friend. I was intrigued by how well its primary features seemed to fit me and might make sense of my whole history. It took me a year to find and obtain an appointment with someone who could diagnose me, but by the time I was done with my research, I was certain I had finally found the answer.
Post-Diagnosis Wins and Losses
Diagnosis felt like a huge victory after 19 years of unanswered questions, excruciating pain, fatigue, and dozens of peculiar symptoms. I didn’t even wait for a doctor to diagnose me to start learning about EDS and how to take the best care of my condition. I joined Facebook groups and read all the research I could find in an effort to understand the disease and begin taking advantage of the copious advice available. I started following the advice of other patients and leading experts in the field of Ehlers-Danlos research and treatment. I began taking supplements, doing physical therapy and myofascial therapy to relieve pain, protect my joints and help heal some of the cognitive deficits I’d been suffering from for years. I started new medications with the help of the doctors I did have. By the time I was diagnosed, I was feeling much better.
I was so relieved and feeling so much better in fact, that I was flummoxed when I attempted to work a few hours a week driving for Uber only to fail after a few months. The short drives would inevitably put me back to bed with migraines, fatigue, and other symptoms. It wasn’t until a few months later, when spring hit and I was suddenly severely allergic to pollen (and within weeks, almost everything else in the known universe) that I put together that it was likely a mast cell disorder wreaking all of this havoc. Having dealt with an odd history of unusual allergies that sometimes went away and sometimes came back with a vengeance, I knew a mast cell condition was a strong possibility when I’d first learned it was a common comorbid condition. But I had put it on a list to address later, thinking it wasn’t such a big deal since I was feeling so much better. Of course, since putting it off has caused this cumulative and extreme effect, I certainly wish I had taken it more seriously.
As Ehlers-Danlos Syndrome and most of the other conditions I have are incurable, I will never be well. However, knowing what I have and how to treat it has been absolutely invaluable and given me more of my life back than I dared to dream. I’m still mostly housebound due to mast cell issues, but I’ve come a long way in the short time that I learned about EDS and its common comorbid conditions. I am able to read, write, draw and paint again. I can care for myself and my home unassisted and most weeks I get out to run errands and go to appointments without major payback. Some weeks, I even enjoy a nice afternoon out with my husband at a movie, museum, play, festival or sporting event.
Perhaps most importantly to me and my mental health, I get to write and feel somewhat productive again. I really enjoy sharing all I’ve learned with others, here at the Unchargeables and The Zebra Pit. It not only helps me feel like I’m paying forward all those good deeds, when others helped me find solutions for my specific problems, but gives me a sense of purpose and puts my degrees to good use. I’ve also made some pretty amazing friends along the way.
I know my future is as uncertain as ever, but I still have a lot of hope. I’m no longer bitter about the years of being denied a diagnosis or the disbelief I often faced about my illness from doctors, friends and family. I know that no matter what happens, I now have a cadre of experts, along with my own research skills and creative abilities, to help me solve whatever comes along. My future may be uncertain, but that doesn’t mean I have to live in constant fear. There’s a big, beautiful world out there I’d much rather focus on instead.