Darkness enveloped the bedroom as I sobbed silently next to my sleeping husband. The clock read 2:00 AM—right on schedule. My back had seized into excruciating stiffness, marking another night of interrupted sleep. Seven years of this torment had stretched my patience, exhausted my resources, and nearly broken my spirit.
Yet through this long journey of misdiagnoses, invalidation, and suffering, I was to discover something profound: understanding pain changes pain.
My path from helpless victim to empowered manager of my condition came as a result of new scientific knowledge that transformed my relationship with chronic pain. And it could transform yours, too.
The Beginning: Pain Became An Unwelcome Companion
The pain started insidiously, about three months after my first child was born. Something wasn’t right.
Night after night, I’d awake around 2:00 AM, my back locked in agonizing stiffness and spasm. Sleep became a luxury I couldn’t afford. My husband would wake to the sounds of my muffled sobs as I tried desperately to find a position that offered even momentary relief.
“You need to see someone about this,” he’d say, concern etching his face.
Eventually, I visited my doctor, who listened briefly before prescribing opiates. The medication helped initially—dulling the edges of my suffering enough to function. I also saw an osteopath who performed some manipulations on my back. For a while, I believed the pain would be temporary. Surely it would subside as my body recovered from pregnancy and childbirth.
Instead, those first disturbing symptoms marked the beginning of a journey that would reshape my entire existence. The opiates masked the worst of it, but underneath, something was fundamentally wrong with how my body processed pain signals.
My doctor referred me to a physiotherapist who ordered an MRI that revealed mild scoliosis. “This wouldn’t cause the level of pain you’re describing,” the specialist physio said dismissively. They assigned an extensive set of exercises, which I dutifully performed despite the additional discomfort they caused. After a year of no improvement, I was discharged from their care with a clinical note stating there was “nothing more they could do.”
Those words echoed in my mind during countless painful nights that followed. Nothing more they could do. Was this my life now?
The Descent: Pain Became My Identity
At first, the morning light brought hope, because once I started moving around, the stiffness and pain improved until the next night. But that didn’t last.
Pain that had initially confined itself to night began creeping into daylight hours. Simple tasks—picking up my child, loading the dishwasher, sitting at my desk—resulted in more pain and stiffness that took my breath away. Four times daily, I reached for opiates, which gradually became less effective while introducing unpleasant side effects: constipation, brain fog, and a disturbing emotional numbness.
During the COVID pandemic, everything intensified. Stress, lack of movement, and isolation created the perfect conditions for pain to flourish.
Before getting pregnant with my second child, I decided to wean off opiate medication. COVID restrictions were lifted, as were my spirits, and for a brief time, there was some small improvement. However, joy quickly gave way to a new challenge during pregnancy: symphysis pubis dysfunction. This painful condition affects the pelvic joints during pregnancy, making even walking excruciating.
“We’ll prescribe low-dose opiates again,” my doctor said matter-of-factly. “Just until delivery.”
Following my second child’s birth, the pain escalated dramatically. Not only did my back troubles return with greater intensity, but pain spread throughout my legs—my knees, ankles and feet throbbed in agony. I developed migraines. Higher doses of opiates followed, along with over-the-counter medications. Medical appointments became exercises in frustration, with healthcare providers increasingly dismissive of symptoms they couldn’t objectively measure.
One physiotherapist suggested my pain might be “all in your head,” while another recommended I “just push through it.” Their invalidation stung almost as much as the physical pain itself. Being dismissed when you’re suffering creates a special kind of loneliness—you begin questioning your own experiences, wondering if perhaps you are somehow manufacturing your suffering.
And sadly, research shows this experience is distressingly common. A 2021 review found that chronic pain patients frequently report feeling delegitimized by healthcare providers, which correlates with poorer outcomes and increased emotional distress.
The Turning Point: Finding Validation and Understanding
After years of being dismissed, I was finally referred to a local specialist pain management clinic, which became my watershed moment. Within minutes of our initial online consultation, the specialist noticed something previous health professionals had missed.
“Have you ever been evaluated for hypermobility?” she asked.
She guided me through several simple movement tests, then nodded knowingly. “I’m pretty sure you have a hypermobility syndrome,” she explained. “It’s a connective tissue disorder that explains your pain perfectly, but I’ll need to assess you face-to-face to be sure.” A month later I had my assessment and was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS).
Tears welled in my eyes—not from pain, but profound relief. Having a name for my condition validated years of suffering that others had dismissed. Someone finally believed me.
The specialist explained that hEDS causes joints to extend beyond normal ranges, creating instability and ultimately pain. My pregnancy had likely triggered symptoms by adding stress to an already vulnerable musculoskeletal system. But joint hypermobility was just one aspect of this complex condition. Because hEDS affects collagen—a structural protein found throughout the body—it can cause a constellation of seemingly unrelated issues: gastrointestinal problems like IBS, dysautonomia affecting heart rate, blood pressure and temperature control, anxiety, chronic fatigue, bladder problems, fragile skin, brain fog, and more. This explained why my symptoms extended beyond musculoskeletal pain into other bodily systems that conventional medicine typically treats as separate conditions.
Despite this breakthrough, I faced another obstacle: a year-long waiting list for the actual pain management program.
Rewiring Pain: The Science Of A Protective Nervous System
At our first pain management session, we were told the real-life story of a man who, when walking on a building site, stepped on a nail which went through the bottom of his boot and caused excruciating pain. However, when he finally got to the hospital and the shoe was removed, they found the nail had passed between his toes without touching his skin.
This phenomenon—experiencing real pain without tissue damage—perfectly illustrates how our brain’s threat detection system works. Pain isn’t always proportional to physical harm; it’s the nervous system’s prediction of potential damage.
My pain management program taught me that chronic pain fundamentally changes nervous system function. After years of continuous pain signals, my brain had become hypervigilant—interpreting normal sensations as threats requiring immediate protective action. And on the flip side, some people are more likely to have a hypervigilant nervous system in the first place, either through genetic factors such as neurodivergence, or through certain life experiences, and so are more likely to experience chronic pain where others wouldn’t.
“Your nervous system is overprotective,” my pain specialist explained. “Like an alarm system that blares at the slightest movement.”
Modern pain science embraces a biopsychosocial model, recognizing that biological factors (my hEDS), psychological elements (unhelpful coping strategies, anxiety, thought patterns), and social aspects (isolation, invalidation, stressful life circumstances or events, past or current trauma) all contribute to chronic pain. This complex interaction explains why purely physical treatments don’t work.
Perhaps most surprising was learning that opioids—the medications I’d depended on for years—actually worsen chronic pain over time. I knew that they became less effective as your tolerance built up, but I learned that research shows they cause hyperalgesia, increasing sensitivity to pain and creating a vicious cycle where more medication produces diminishing relief.
Neuroplasticity—the brain’s ability to reorganize itself—offers hope. Just as my nervous system learned to amplify pain signals, it could learn to interpret sensations differently. This realization shifted my perspective from helpless victim to active participant in my healing.
The program introduced me to pain neuroscience education (PNE), which has shown remarkable effectiveness in reducing pain intensity and improving function. Understanding how and why I hurt, changed my relationship with pain itself.
The link between hypermobility and neurodivergence particularly resonated with me, as I have a family history of both. Dr. Jessica Eccles’ groundbreaking research suggests people with joint hypermobility are significantly more likely to experience anxiety, depression, and neurodivergence, e.g. autism and/or ADHD. This insight prompted me to investigate my own undiagnosed traits of autism and ADHD, and realize that they were contributing to my pain.
Understanding these connections didn’t eliminate my pain, but it provided context that made it less frightening and isolating. The mystery was unraveling, and with that came a sense of agency I hadn’t felt in years.
Dialing Down the Threat: Practical Strategies for Pain Management
My first attempt at pacing lasted exactly three days before ambition derailed my efforts.
Feeling slightly better after starting the program, I got carried away “getting things done” as I do, paying for it with three days of increased pain. This cycle of overexertion followed by forced rest—known as “boom and bust”—had dominated my life for years.
Pacing, I learned, means doing less than you think you can, not pushing until pain stops you. Starting with short intervals of activity, followed by rest, regardless of how I felt, created sustainable activity patterns. Gradually, I built tolerance without triggering my hypervigilant nervous system.
Research confirms this approach works: a systematic review found that activity pacing significantly improves function and quality of life in chronic pain patients.
Movement became medicine—but not in the punishing “no pain, no gain” manner often prescribed. Instead, I was taught gentle mindful movement stretches adjusted for hypermobility, along with carefully designed, slowly built up strengthening exercises, which supported my joints without threatening my nervous system.
Sleep hygiene practices reduced my nighttime pain episodes. Establishing a consistent bedtime routine, limiting screen exposure before sleep, and creating a restful environment by doing progressive muscle relaxation before bed gradually improved my sleep quality. Better sleep meant less pain, creating a positive feedback loop.
Self-compassion proved surprisingly powerful. Years of invalidation had taught me to criticize my limitations. Learning to treat myself with the kindness I would offer a friend struggling with chronic illness counteracted shame that intensified pain.
I learned to recognize societal pressures that exacerbated my condition. Our culture’s glorification of “pushing through pain,” constant productivity, and people pleasing, particularly harms women, who are already disproportionately affected by chronic pain conditions and less likely to receive adequate treatment according to research. I learned to say no – to others, and to my own incessant need to be busy.
Mindfulness meditation initially seemed impossible—sitting still with pain felt counterintuitive. Starting with brief guided body scans allowed me to observe sensations without judgment or resistance. Over time, this practice helped disconnect the automatic fear response from pain sensations.
Perhaps the most remarkable achievement came when I began a carefully structured opiate weaning program. Over ten weeks, I gradually reduced my medication dosage under the guidance of the pain clinic, substituting the strategies I’d learned for pharmaceutical relief. The outcome shocked me—after years of dependence, believing I would never cope without it, I was medication-free with no increase in pain levels. My nervous system had truly begun to readjust.
These approaches weren’t quick fixes, but very gradual recalibrations of a nervous system that had been stuck in high alert for years. And I don’t always get it right. Sometimes I slip back into old, unhelpful ways of thinking and behaving, but being aware of that is half the battle. You can’t make change without awareness, after all.
The Path Forward: Systemic Change Is Needed
My personal journey illuminates broader issues in chronic pain management that demand attention.
The scale of chronic pain is staggering. According to a meta-analysis, an estimated 28 million adults in the UK live with chronic pain—approximately 43% of the population. In the United States, the numbers are equally alarming, with over 50 million adults (20.4% of the population) experiencing chronic pain, and 19.6 million enduring high-impact chronic pain that limits life or work activities, according to the CDC. Yet despite affecting more people than diabetes, heart disease, and cancer combined, chronic pain receives a fraction of the research funding and public health attention.
The average wait time for specialized pain services in the UK varies, with some patients waiting over two years to access the treatment they need, according to data. This delay often worsens conditions that might respond better to earlier intervention. Healthcare systems must recognize chronic pain as a priority, not an afterthought.
The scale of opioid use for chronic pain is a huge problem too. In the UK, data shows that approximately 5.6 million people receive opioid prescriptions annually, with a 34% increase in opioid prescribing over the past decade despite limited evidence for long-term effectiveness. The situation in the US is even more dire, where opioid prescribing rates peaked in 2012 with 81.3 prescriptions per 100 persons, contributing to over 500,000 opioid-related deaths between 1999 and 2019, according to the CDC. Healthcare systems must implement alternatives to opioid therapy as first-line treatments for chronic pain, while ensuring accessibility of evidence-based pain management programs.
Medical education requires fundamental updates. Many practitioners still operate from outdated pain models that fail to incorporate modern neuroscience. During my seven-year journey, not one healthcare provider mentioned hEDS or nervous system sensitization until I finally reached the specialized pain clinic.
Gender bias in pain treatment demands urgent correction. Studies consistently show women’s pain reports are more likely to be dismissed, attributed to emotional causes, or undertreated compared to men with identical symptoms. This systematic invalidation adds unnecessary suffering to already challenging conditions.
For individuals currently struggling with persistent pain, I offer this hope: understanding changes everything. While I haven’t eliminated my pain, comprehending its mechanisms transformed it from a terrifying mystery to a manageable condition. Knowledge truly is power when it comes to healing a hypervigilant nervous system.
My chronic pain continues, but it no longer ruins my life. By understanding pain, I’ve reclaimed agency in my healing journey—and you can too.
