I had momentarily passed out from the pain I experienced just washing my hands.<\/p>\n
I was diagnosed with complex regional pain syndrome, a poorly understood form of pain that is severe, chronic and debilitating. \u201cAlthough most cases are triggered by an injury, the resulting pain is much more severe and long-lasting than normal,\u201d notes the U.K.\u2019s National Health Services<\/a>. \u201cThe skin of the affected body part can become so sensitive that a slight touch, bump or even a change in temperature can cause intense pain. Affected areas can also become swollen, stiff or undergo fluctuating changes in color or temperature.\u201d<\/p>\n CRPS makes my skin feel like it\u2019s on fire on the inside yet freezing cold on the outside. My bones feel like they are broken, and my skin is so sensitive, it\u2019s difficult to wear clothes or shoes. My skin swells and turns reddish-purple. The simplest touch can feel like being stabbed with a red-hot poker. The condition can show up weeks, months or even years after an injury or surgery, but \u2014 and I often think this is the cruelest detail of all \u2014 it\u2019s not fatal.<\/p>\n Though CRPS typically affects the body part or region that was injured, mine has progressed to encompass my entire body. The left side of my face feels like Mike Tyson is using my cheekbone as a punching bag 24\/7. My arms are so sensitive I can\u2019t wear long sleeves, even on the coldest days. My feet feel like their bones have been ground to dust and their skin has been doused with liquid nitrogen, so when I walk, it feels like I\u2019m walking on shards of broken glass.\u00a0 This is my baseline \u2014 every minute of every day. It never gets better. I\u2019ve had to learn how to tolerate the pain enough to get out of bed and just do one small task a day.<\/p>\n Also Read: I Suffered From Debilitating Migraines \u2014 Until A Friend Suggested A Shocking Treatment I Never Expected To Work<\/a><\/p>\n About twice a month \u2014 usually when there\u2019s a change in the weather or if I have overexerted myself the day before \u2014 my pain will flare. My face will swell, often to the point I can\u2019t see or eat. Kisses from my pug feel like someone is running an industrial sander across my skin. The pain in my feet becomes so excruciating I can barely make the 20 steps from my bed to the bathroom.<\/p>\n An estimated 200,000 Americans are struggling with this condition, which The McGill Pain Index<\/a> lists as the most painful condition known to medicine. It is considered more painful than fibromyalgia or giving birth \u2014 even more painful than amputating a finger without anesthesia.<\/p>\n There is no cure for CRPS<\/a>. Even worse, doctors can\u2019t seem to agree on what causes it.<\/a> I\u2019ve been told it\u2019s anti-inflammatory or autoimmune. I\u2019ve heard that it\u2019s due to my autonomous nervous system being stuck in \u201cfight or flight\u201d mode because of childhood trauma. Or that it\u2019s because my original injury was immobilized. But the worst thing that doctors have said to me \u2014 and many other poor souls with CRPS \u2014 is that it\u2019s because our brains are broken. Or they think we\u2019re crazy. Or that we\u2019re just opioid-seeking addicts.<\/p>\n Like this article? Keep independent journalism alive. Support HuffPost<\/a>.<\/p>\n Ironically, because of the opioid crisis, I can\u2019t get pain medications. I\u2019m taking nine other types of prescription medicine right now, but none of them are for pain, and none of them really help. Instead, I tell my kids that I can\u2019t do things with them because I\u2019m in too much agony. I stay in bed on beautiful days when I\u2019d rather be gardening. I stay home instead of hiking or going to Seahawks games because even with a cane, I can only walk so far. I had to abandon my dream of publishing an upscale comfort food blog because I\u2019m in too much pain to cook. Many days, it\u2019s too painful even to move my fingers across a keyboard.<\/p>\n When the pain gets so bad I can\u2019t bear it, which is about three times a day, I can soften it some with cannabis. However, this means I don\u2019t dare venture into a state where the drug isn\u2019t legal, which also forces me to miss vacations, girls\u2019 trips, and Christmas celebrations away from home.<\/p>\n Also Read: My Doctor Gave Me A Devastating Diagnosis. A Year Later, My Follow-Up X-Rays Revealed Something Shocking.<\/a><\/p>\n When I have an especially awful pain flare, which is about twice a month, I stay home and in bed, sometimes for as long as two weeks. I miss my kids\u2019 activities. I cancel on people so often they no longer ask if I\u2019m available to do something together. Being in pain is a lonely place to be, especially when you\u2019re being blocked in your recovery at every turn by doctors and insurance companies.<\/p>\n You might be thinking to yourself, \u201cWell, I bet she hasn\u2019t tried this…\u201d Yes, I have. I\u2019ve been on Lyrica, gabapentin, naltrexone, PTSD medication, and every SSRI on the market. I\u2019ve tried stellate ganglion blocks, spinal cord stimulators, lidocaine infusions and ketamine. I\u2019ve done physical therapy, trauma therapy, psychotherapy, massage, acupuncture, reiki, essential oils and grief retreats. My medical records resemble \u201dWar and Peace\u201d\u00a0\u2014 just as long and confusing, with too many in its cast of characters to keep straight. I\u2019ve seen over 20 doctors in four states.<\/p>\n Last year was a \u201cgood year\u201d because we \u201conly\u201d paid $10,000 out of pocket for my medical appointments, prescriptions and one round of ketamine infusions. I spent an additional $5,200 on medical cannabis.<\/p>\n My CRPS has gone into remission three times. The first two times were when my pain was mainly in my left arm. My doctor implanted a spinal cord stimulator, a pacemaker-type device that was embedded in my lower right hip. Wires are connected to the affected nerves at the base of my brain and a cord about the size and texture of a stereo cable runs down my spinal column to the pacemaker. The stimulator works by \u201cinterrupting\u201d the pain signal from my brain and sending a buzzing sensation to the affected nerves. I\u2019ve had six surgeries to replace the stimulator and the wires, including two during the two months before my wedding.<\/p>\n Also Read: To Let My Son Live, I Had To Kill The Dream Of Having A Daughter<\/a><\/p>\n The third time I went into remission after receiving multiple high-dose ketamine infusions over the course of four days.<\/p>\n Unfortunately, even with those treatments, my CRPS eventually returned. Now that I have had CRPS for over 20 years, my doctors have told me that it will probably never go back into remission. They frequently retitrate my prescriptions, but it\u2019s like they\u2019re rearranging deck chairs on the Titanic. They tell me to tell my brain that I\u2019m not in pain. They tell me to exercise, and then look at me blankly when I point to my cane and ask what exercise I should do when just managing the stairs in my home is a major feat.<\/p>\n “I took this photo of myself after watching hours of makeup TikToks to figure out how to hide the redness and swelling that I so frequently experience,” the author writes. Courtesy of Alex Hankin Hart<\/p>\n The pain is so bad that many CRPS patients would gladly sacrifice one or more body parts to be rid of it, but we\u2019re told that amputating the affected limb(s)<\/a>\u00a0could just leave us with phantom pain. And amputation won\u2019t help when CRPS starts attacking you inside your body.\u00a0 <\/p>\n I\u2019ve plunged into the deepest depths of depression and anxiety. The exhaustion alone is debilitating. It has also caused me to have gastropareses<\/a>, which means my body doesn\u2019t digest food correctly, so I experience constant nausea, cramps and bathroom experiences that are just too horrific to detail. I also get \u201cfake heart attacks,\u201d where it feels like a sword is repeatedly being stabbed through my chest. The list of symptoms goes on and on and on.<\/p>\n Also Read: I Got Inseminated In A Burger King Bathroom Just Off Route 57<\/a><\/p>\n Thankfully, many people with CRPS do go into remission months or years after being diagnosed, and up to 80% of individuals who do physical therapy can achieve some pain reduction<\/a>. However, in my case, PT failed and the pain spread to other parts of my body.<\/p>\n From my experience and in discussions with other CRPS warriors, it seems like only two treatments work for those of us struggling with chronic, long-term CRPS: repeated high-dose ketamine infusions<\/a> and Calmare biofeedback<\/a>. Both of these treatments work to reset our brains so our sympathetic nervous systems stop giving out incorrect pain signals. However, both are provided at only a few places and neither are covered by my insurance.<\/p>\n CRPS is known as \u201cthe suicide disease\u201d<\/a> because of the severity and longevity of the pain it causes, and because there is no known treatment guaranteed to work, let alone a cure for it. Our disability makes working nearly impossible. We\u2019re a burden to our families. And the difficulty of obtaining pain medication makes our lives even harder.\u00a0<\/p>\n When I was first diagnosed, my doctors prescribed opioids, which allowed me to continue to hold a high-pressure job in technical marketing. But now, I\u2019m not allowed a single oxy or hydrocodone pill, even though I have no history of abusing my prescriptions and have offered to take regular drug tests.\u00a0<\/p>\n It\u2019s not just CRPS patients who are regularly affected by pain. According to a recent CDC study<\/a>, an estimated 20.9% of U.S. adults had chronic pain lasting more than three months in 2021, while 6.9% of Americans had high-impact chronic pain that limited their daily activities. Despite this, the medical community, currently grappling with an opioid crisis, sticks their heads in the sand every time anyone even dares utter the word \u201cpain.\u201d<\/p>\n So what needs to change? Nursing and medical schools need better education for their students on pain management and how to deal with patients who are experiencing chronic pain. CRPS patients\u2019 lives are hard enough as it is, but we face even more challenges because, too often, we\u2019re dealing with medical professionals who don\u2019t know enough about pain, won\u2019t listen to us, and don\u2019t seem to have any compassion for us. <\/p>\n There also needs to be better education and research on opioids and other pain medications. My dream is that a pharmaceutical company will discover a non-addictive painkiller that will be covered by insurance, Medicare and Medicaid. But until that happens, we need better options and better access to them, including ketamine infusions and Calmare biofeedback that are available at more hospitals without costing patients their life savings. We also need cannabis legalized in all 50 states.<\/p>\n As I write this, I\u2019m finishing a five-week intensive outpatient program which, instead of doling out treatments one by one, combines all that modern medicine and pain psychology have to offer. In addition to receiving ketamine infusions, physical therapy, occupational therapy and medicine management, I\u2019m also learning about neurobiology. For example, I had no idea that physical and emotional pain are processed similarly by the brain and that addressing one kind of pain can be crucial to alleviating another. <\/p>\n To do that, I\u2019m learning how to incorporate multiple forms of psychotherapy, such as acceptance and commitment therapy (ACT), cognitive behavioral therapy (CBT) and dialectical behavioral therapy (DBT), into my life. Most importantly, I\u2019ve found my tribe \u2014 a group of people who have also suffered from severe chronic pain in isolation for far too long \u2014 and their support means the world to me.<\/p>\n I\u2019m also learning to grieve the loss of my former life. I\u2019ve realized that I\u2019ll probably never check hiking to the top of Mount Si off my bucket list or wear my 4-inch python Louboutin heels again, and while that is devastating, it\u2019s also OK. I\u2019m learning to find and love the new me \u2014 a person whose life isn\u2019t solely centered around my CRPS. There is only so much I can control, and I don\u2019t know what\u2019s ahead for me. I will most likely always have CRPS, but I refuse to let my condition write my entire story. I want to do whatever I can to live my life as fully as I can, and I want to help others with similar challenges do the same.<\/p>\n Alex Hankin Hart lives in the Seattle suburbs with her amazing husband and son, and a pug named Banshee. She is a die-hard Seahawks fan, and in better times, enjoyed cooking, yoga and gardening. Alex is currently working on her first novel, \u201cWolves in Cashmere Clothing.\u201d<\/p>\n This piece was previously published on HuffPost and is being shared again as part of HuffPost Personal\u2019s \u201cBest Of\u201d series.<\/p>\n Do you have a compelling personal story you\u2019d like to see published on HuffPost? Find out what we\u2019re looking for\u00a0here<\/a>\u00a0and\u00a0send us a pitch at pitch@huffpost.com.<\/a><\/p>\n Related…<\/p>\n![\""I](\"https:\/\/www.newsbeep.com\/us\/wp-content\/uploads\/2026\/06\/ff2050d19f8b5b48fee411d6f2693cdf.jpeg\"\/)
<\/p>\n