Lili

Patient Leader

“Taming the Beast” is both a book (in progress) and a blog about alternative care for chronic pain. How did I come to be doing this work? Like most of my readers, I am a person who lives in pain. In my case, this pain comes from full body RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome), trigeminal neuralgia, osteoarthritis, colitis, post herpetic neuralgia and biliary disease. It is not unusual for a sufferer of chronic pain to have other illnesses; disorders of pain, immune or central nervous system (CNS) dysfunction often come to exist side by side in the same beleaguered body. Pre-existing immune dysfunction made treatment of the RSD/CRPS all but impossible for me, leading to a decade of indescribable suffering as well as an intensive search for non-pharmaceutical answers to a disease that is rarely treated with anything but drugs or invasive surgical measures. During 10 years of terrible struggle, I was extremely motivated to find every possible natural or non-pharmaceutical method to relieving pain and then, to finding alternative treatments for a wide range of bodily dysfunctions as the disease progressed. It was a difficult task; many things I tried did nothing, some greatly worsened my condition. But one by one I found tools and techniques that truly helped. Bit by bit, I reclaimed my life. I am not “cured”, I am not (yet) in remission, but I have regained abilities and mobility that I never thought to see again. I have learned ways to have a full and often happy life despite sharing it with a monster, and to ease suffering and improve functioning in almost every part of the body and mind. Although I didn’t know it then, I began the journey of writing this book when first diagnosed with RSD. When, after years of pain, study, trial and error in isolation, I forged connections, reaching out (thanks to the internet) to other sufferers who generously shared their knowledge and experience, I saw how even those who could take medications were suffering for a lack of alternative care options. The idea of sharing what I’d learned became ever harder to ignore, and eventually coalesced into “Taming the Beast”. I’d had an enforced education; now I wanted to take this body of knowledge, forged in the fire of suffering (mine and so many others’) and see it used to ease the lives of the many, many people in pain, worldwide. My unusual history had given me a specific body of knowledge which I now hope and believe will be of help to all who must also fight the beast that is chronic pain. Initially, I was focused entirely on RSD/CRPS. The need was so great and the dearth of alternative care so acute. RSD/CRPS had such a dire reputation that some health professionals simply turned away; it was so misunderstood that others denied its existence, or believed it to be a form of mental illness (research has now shown this to be unfounded). But over time, I saw that many pain disorders shared the hallmarks of RSD/CRPS if not the severity, and that, when it comes to pain, comparisons are pointless. Suffering is suffering and so many people are suffering! Also, most disorders of pain eventually impact immune functioning and CNS, causing symptoms that are almost as hard to bear as the pain itself. And because of a lack of other options, most chronic pain patients end up taking a toxic stew of pharmaceuticals in their desperate struggle to find peace in a pain-filled body. It became clear to me that pain patients’ needs were not being met by the medical profession, and that all shared to some degree the stigma and misunderstanding that is such a bane to suffers of RSD/CRPS. I have kept a focus on RSD/CRPS, both because it is the area of my own personal experience, and one of great need, but also because it encompasses such an incredible array of symptoms; in covering the it, I cover the vast majority of symptoms of other diseases of pain, including arachnoiditis, arthritis, fibromyalgia, post herpetic neuralgia, trigeminal neuralgia, diabetic neuropathies, lupus, MS, shingles, environmental illnesses and a wide range of other neuralgias, neuropathies, immune system, neurological and mitochondrial diseases. Many of these disorders are now or have been previously overlooked and under-estimated. The needs of their sufferers are also great. And the techniques that work for RSD/CRPS will work for them. Initially, I thought I might write a blog once the book was finished and available, as a way to let others know of its existence; but somehow, the idea kept pushing forward. On a practical note, as a member and administrator of a number of information/support networks, I repeatedly found myself answering the same critical questions; it seemed a good idea to provide a spot where people could find those answers any time to review as needed. As well, I have been encouraged by both my family and by the many brave and brilliant RSD/CRPS angels in my life to share not only the information, but the experience of this work. Thus, “Taming the Beast” (the blog), was born here and now, despite the fact that this work is still in progress and must wax and wane with my condition. I hope that my blog will be a living thing, a place of continuing learning for my readers and myself. I want to share my work, my experience, and my knowledge, and also share in the experiences, triumphs, challenges, and knowledge of my readers, and to identify the needs that are as yet unfilled. I am currently hard at work on a survey, as yet another way of asking my readers’ input to make “Taming the Beast” into the truly inclusive, “patient’s best friend” that I so badly want it to be. I want this book, and this blog, to really reflect our global community of people in pain, and I am grateful for the opportunity to help lessen daily suffering and share the knowledge that I have fought so hard through so many challenging years to bring together.

Past Awards Participation

Third Annual Health Activist Awards

Nominations

Rookie of the Year

Fourth Annual Health Activist Awards

Nominations

Best Kept Secret Health Activist Hero Best in Show: Blog
Lili

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