The Chronic Pain Experience Podcast

Deana Tsiapalis

Conversations about chronic pain management, the chronic pain experience and interviews with experts to inspire, motivate and change your relationship to pain.

  1. Oct 22

    From Chronic Pain Recovery Coach To Patient - Navigating life with a rare Autoimmune disease

    Scroll to the bottom of the page to listen to the Audio version of this blog post. Foreword: A heartfelt thank you to the wise and wonderful Alesia Briggs for generously sharing her time and for the thoughtful, meaningful conversation about my health journey. Alesia is an incredible coach, and I’m so grateful for her curiosity, compassion, and the opportunity to share my story through her eyes. What happens when the tools you teach others meet a serious illness of your own? You find out that knowing the science does not make you immune to being human. I help people understand persistent pain, work with their nervous systems, and find a way forward. Then I was diagnosed with granulomatosis with polyangiitis, or GPA, a rare form of vasculitis, and suddenly I needed to draw on that knowledge myself. There was fear. There was uncertainty. There were moments when I could not take in what doctors were telling me. Being a coach did not mean I should somehow handle all of that perfectly. The tools helped, absolutely. But they did not give me every answer. They helped me take the next step while I was still frightened, still learning, and still very much a person going through something she had never chosen. Understanding Pain Beyond the Physical Symptoms What gap were you trying to fill through your work and the Chronic Pain Experience Podcast? There is so much information emerging about pain, and it does not always reach the people who need it. Some people have never been introduced to the newer science of pain. Their doctors may not have had much training in it either. That is not about blaming anyone. It is about recognizing a gap. During lockdown in 2020, I spent more time learning alongside other pain providers, and that deepened my work enormously. I love a good conversation, so a podcast felt like a natural way to share what I was learning. Reaching fifty episodes was a happy accident. I had not pictured that milestone when I started, and I have learned a tremendous amount along the way. How did you come to work with people living with chronic pain? My interest started well before this diagnosis. I am also a Pilates instructor, and people often came to movement looking for something that felt safe and accommodating. One woman, Michelle, taught me so much. She had lived through fibromyalgia, cancer, and a long list of other health challenges. Getting to know her helped me recognize how many parts of the illness experience were not being addressed. I had also experienced migraines and headaches, and my mother lived with migraines. So pain was not unfamiliar to me, even though I was not living with constant pain myself. What fascinated me was everything beyond the biological piece: the psychological experience, the nervous system, and the impact of difficult life experiences. Getting sick made that wider picture even more real. Where do chronic pain and chronic illness overlap, and where are they different? They are not interchangeable. Someone can have debilitating persistent pain without imaging providing a clear explanation. With an illness like mine, doctors eventually identified a disease process affecting my body. But there is overlap in the uncertainty, the fear of a flare, the changes in daily life, and the way we relate to our bodies. Living with either can affect how alert we feel to symptoms and how confident we feel about doing ordinary things. So far, I have not been living with persistent pain from vasculitis, although there was certainly pain during my illness. What has helped is recognizing that pain education and nervous system tools can support my experience without replacing the medical treatment I need. From an Ordinary Illness to a Long Hospital Stay How did your illness begin? At first, I thought I had the same cold or flu-like bug my family had. My husband and children got through it. I seemed to be getting through it too, until I was not. I travelled to Winnipeg with my daughter and kept going downhill. I lost about ten pounds, could not keep food or fluids down, was coughing terribly, and became so exhausted I could barely get off the couch. That was definitely not me. When I went to hospital, lung cancer was raised as a possibility almost immediately. Hearing that was frightening, especially before we had a clear explanation. Then more problems appeared: my lungs, my kidneys, a major digestive tract bleed, fluid buildup, and concern about my heart. It was a cascade of things, rather than one straightforward symptom. How long did it take to get a diagnosis? I was hospitalized for about six and a half weeks. It took roughly four weeks before there was a clearer understanding of what was happening, and even then there were competing possibilities. I had care across two hospitals, with different teams contributing. I am grateful for that. The benefit is that you have people bringing different perspectives. The difficult part is that you also have a lot of information and opinions to process. Eventually, my nephrologist came in with a look I will never forget. She thought she knew what it was: a particular form of vasculitis. That became GPA. For general background, the National Institute of Arthritis and Musculoskeletal and Skin Diseases provides an overview of vasculitis. Having a name did not make everything easy, but it gave us a direction. How did you cope with weeks of not knowing? I kept reminding myself that a possibility was not the same thing as an answer. We did not know whether it was cancer. We did not yet know exactly what it was. I needed to avoid treating the most frightening explanation as a confirmed fact. That is much easier to say than to do. Sometimes you need someone beside you to gently bring you back to what is actually known. I was not trying to tell myself that nothing serious was happening. Something serious clearly was happening. I was trying to stop my mind from adding certainty where the medical team did not yet have it. For me, that distinction made the waiting a little more manageable. Family, Brain Fog, and Asking for Support How did you decide what to tell your children? Initially, my husband and I agreed not to mention cancer until we knew more. We wanted to protect them from a possibility that might not be the diagnosis. But uncertainty created its own fear. When my daughter saw the worry on my husband’s face at the hospital, she thought I had died. That was a painful reminder that families fill in the blanks when they do not know what is happening. We decided to include our children in conversations with the doctors, and for our family, that helped enormously. They could hear information directly and understand more of what was going on. I would not assume every family needs exactly the same approach. The useful conversation is: What do you want to know, and how can we help you feel included? Were you able to keep track of all the medical information? Honestly, no. I knew brain fog was real through migraines and through working with people who experience it. But this was different. I was amazed by how difficult it became to absorb and organize information. My husband was incredible. He is an engineer and a numbers person, and he listened, asked questions, and helped clarify things when I could not. Later, when I had questions, he could often remind me what had been said. He also has a rare disorder, so we had to protect his health, including making sure he went home to sleep. Not everyone has a partner who can do that. A trusted friend, another family member, or an agreed recording of an appointment may help preserve information. The point is not to expect yourself to remember everything while seriously unwell. Using the Tools Without Demanding Positivity Which tools from your coaching work helped in hospital? One was understanding that symptoms were happening in a context. There were real medical problems, and pain was part of that experience. I did not need to turn every sensation into a new story about everything getting worse. During procedures, I would remind myself that something could be frightening while I was also being cared for. That helped me move through the moment rather than treating every piece of information as another threat. I also looked for small things that were neutral or good. I was not forcing myself to feel grateful for failing health. That would have felt impossible. But my family was there. Someone was helping me. There were still points of connection. Those were things I could genuinely hold on to. What were the turning points in your recovery? The first was getting a diagnosis and beginning treatment directed at it. That felt like moving from survival toward a first step forward. The next was noticing that treatment was helping enough that I could start thinking about home. I had been through transfusions, procedures, and a lot of difficult days. I had also been nearby when other patients experienced traumatic events. I was ready to leave before my team felt I was ready. Thinking about sleeping at home gave me something concrete to look toward. Neither turning point meant the whole journey was resolved. They mattered because they made the next part imaginable. Sometimes that is what hope looks like: not a complete answer, just a believable next step. Remission, Movement, and a Different Relationship With Your Body What does remission mean for you now? Being told I was in remission was wonderful news. It did not mean everything had returned to how it was before. My kidney function remains very low, and a kidney transplant is part of the conversation. There is also the possibility of relapse. So I am learning to live with good news and ongoing uncertainty at the same time. What helps most is talking with my specialists. Each conversation gives me a deeper understanding, and that makes things a little less frightening. I may never know why this happened. I would love an explanat

    From Chronic Pain Recovery Coach To Patient - Navigating life with a rare Autoimmune disease
  2. Aug 14

    Beyond Medication: Exploring Evidence-Based Alternatives for Chronic Pain

    Scroll down to the bottom of the page to listen to the audio If you have lived with persistent pain for months or years, you may know this cycle far too well: a diagnosis, a prescription, perhaps a specialist referral, and then back into daily life still hurting and still wondering whether this is really all there is. It is not all there is. That does not mean conventional medicine has no place in pain care. It absolutely does. But far too many people are never told about the wider landscape of treatments that may help them. The goal is not to reject medicine. It is to expand the conversation so you can make informed decisions about your own healing. ​Why Many Doctors Do Not Discuss Alternative Pain Treatments One of the most common beliefs in chronic pain is this: If an alternative therapy really worked, my doctor would have mentioned it. Unfortunately, that assumption does not hold up well. Many doctors receive remarkably little education about pain during medical school. Their continuing education may be shaped by pharmaceutical-funded journals, conferences, and representatives. Meanwhile, the major medical publications often give limited attention to integrative and alternative pain therapies. That does not make doctors uncaring. Most are busy, overwhelmed, and doing their best within a system that has not equipped them to address chronic pain comprehensively. In one survey of primary care physicians at academic medical centers, a majority reported that they did not feel competent treating pain. So when a doctor does not mention acupuncture, biofeedback, mindbody approaches, chiropractic care, movement therapy, energy psychology, or other options, it may simply mean they do not know enough about them. It does not mean those approaches have no value. Alternative Therapies Are Not Just Placebos There is a deeply ingrained belief that natural or integrative therapies are somehow less legitimate because they do not work like a drug. But chronic pain is not just a chemical problem. It is a complex experience involving the brain, nervous system, immune system, muscles, tissues, memories, stress levels, movement patterns, and more. Research support for pain treatments can be surprising. When comparing broad categories of chronic pain treatment, mindbody therapies have substantial research support. In one review of peer-reviewed research using an AI research tool, 73% of studies found mindbody therapies effective for chronic pain, while the remainder found they were possibly effective. None concluded they were ineffective. Opioids, by comparison, had much more mixed findings. That does not mean opioids never have a role. It means they are not the simple, evidence-backed answer many people were led to believe they were. Mindbody approaches do not mean pain is imaginary or “all in your head.” Pain is real. But your nervous system is always part of the pain experience. When the body is stuck in fear, stress, vigilance, and overwhelm, pain can intensify. Learning to calm that system can make a meaningful difference. Stress Changes the Body This is not blame. It is physiology. Stress and fear can create muscle tension, reduce circulation, interfere with digestion, disrupt sleep, and make healing more difficult. Relaxation and nervous system regulation can help reverse some of those patterns. That is why tools such as biofeedback, guided relaxation, trauma-informed therapy, and gentle mindbody practices can be so valuable. For some people, simply realizing they have some influence over their pain experience is a turning point. Feeling completely helpless can make pain even more frightening. Regaining even a small sense of control can begin to change the whole picture. Pain Can Be Structural, Nervous System Driven, or Both It is important not to swing too far in the other direction. Not every pain problem is caused by stress, trauma, or nervous system sensitization alone. Sometimes pain has a structural component that needs to be identified and addressed. Sometimes tissues are injured, shortened, overloaded, inflamed, or functioning poorly after surgery or an accident. Sometimes a treatment aimed only at nervous system regulation will not resolve the underlying physical issue. But even when pain is structural, the nervous system still matters. Long-lasting pain often brings fear, avoidance, deconditioning, frustration, grief, and hypervigilance. Those reactions are understandable, and they can compound suffering. The most helpful question is not, “Is my pain physical or psychological?” The better question is: What pieces are contributing to my pain, and which ones can I address now? For many people, the answer involves more than one piece: Medical evaluation for injuries, disease, and structural concerns Gentle movement to rebuild strength and confidence Nervous system regulation and stress reduction Support for trauma, anxiety, sleep problems, or depression Hands-on therapies, devices, or other symptom-relief tools A knowledgeable guide who can help sort through the options Why Chronic Pain Care Can Feel So Overwhelming People living with pain are often told to keep searching, but then they are handed an internet full of conflicting information. That can be exhausting. There are new technologies, ancient healing traditions, physical therapies, psychological approaches, medical interventions, devices, and products. How is anyone supposed to know where to begin? This is why a pain navigator or informed practitioner can be so helpful. Rather than offering a one-size-fits-all solution, a good guide looks at the full context: What conditions do you have? When and how did your symptoms begin? What treatments have you tried? What helped, what did not, and what made things worse? How is pain affecting sleep, work, movement, relationships, and hope? What financial and practical limits need to be considered? Chronic pain treatment should be individualized. What works beautifully for one person may do little for another. The point is not to chase every possible therapy. It is to identify the options most likely to fit your circumstances and try them thoughtfully. Starting Without Spending a Fortune Cost is real. Many integrative services are not covered by insurance, and chronic pain can already create financial strain. But not every helpful step requires a major investment. Start with the basics that support the nervous system and body as a whole. Use Free Mindbody Resources There are free relaxation exercises, breathing practices, guided meditations, and introductory tools available online. Some pain-focused apps also offer free trials or limited access. These are not magic fixes, but they can be a practical starting point for lowering stress and building skills. Simple energy psychology techniques, including forms of tapping or holding acupressure points while focusing on stress, pain, or distressing memories, may also help some people settle their nervous system. Move in the Smallest Possible Way Movement matters, even when pain makes movement intimidating. This does not mean pushing through severe symptoms, running a marathon, or pretending fear does not exist. It means starting somewhere safe and realistic. For one person, that may mean walking to the mailbox. For another, it may mean a few minutes of gentle mobility work. Water exercise can be especially helpful for back and joint pain because a pool supports some of the body’s weight. Community pools, YMCAs, and certain Medicare Advantage plans may offer lower-cost access. Long periods of complete inactivity can lead to weakness and deconditioning, which may make pain and function worse over time. Tiny, consistent steps count. Support Your Body With Everyday Choices Eating more real food and fewer heavily processed foods, improving sleep where possible, and finding manageable ways to move are foundational. These basics do not solve every pain condition, but they create a better environment for recovery. There Is Always More to Learn About Your Options The human body is not simply a collection of chemicals and cells. It is also electrical, neurological, mechanical, emotional, and conscious. The brain, heart, and nerves all involve electrical activity. The body responds to light, touch, movement, magnetic fields, safety, and connection. That broader understanding opens the door to approaches that conventional pain care may overlook. Some people benefit from physical therapy, chiropractic care, acupuncture, massage, neurofeedback, light therapy, microcurrent therapy, pulsed electromagnetic field devices, neuromuscular stimulation, or other tools. Some of these options can be used at home after a one-time purchase. Others may be covered partially by insurance. An electric massager, for example, can be an inexpensive, practical tool for recurring muscle pain. The right choice depends on the person, the condition, and the circumstances. There is no single treatment that works for everyone. But there are far more possibilities than many people have been led to believe. Hope Is Not Wishful Thinking There are people who have lived with pain for decades and eventually found an answer. There are people who have recovered from severe fibromyalgia, complex regional pain syndrome, disabling back pain, and profound mobility limitations. Their paths were not always quick, simple, or inexpensive. But recovery became possible when they found the missing pieces. If you have been told, “There is nothing more we can do,” please do not assume that means there is nothing more available. It may only mean that the person you asked did not know the full range of options. You deserve care that sees the whole of you. You deserve information that helps you make decisions. You deserve providers who listen, take your pain seriously, and understand that healing can require more than a prescription. Do not lose hope. Keep looking, get informed,

    Beyond Medication: Exploring Evidence-Based Alternatives for Chronic Pain
  3. 08/20/2025

    Why Do I Hurt So Much? Episode 1/3

    ​​If you’ve been searching for ways to reduce chronic pain and feel like you’ve tried everything—medication, procedures, therapies—but the relief never lasts, this guide is for you. In the final episode of a three-part series from Pain 2 Possibilities, I will walk through why pain becomes stubborn and, more importantly, what you can do about it. Below I’ll summarize and expand on this evidence-based approach so you have a clear, practical plan to reduce chronic pain and reclaim more of your life. 1) Why this matters: chronic pain is not just about tissue Many people assume ongoing pain equals ongoing tissue damage. That’s not always true. To reduce chronic pain we need to understand that pain can be a multi-system problem: structural/mechanical, nervous system sensitization, and psychological/social factors. When treatments only address one area, especially just the structural side, pain often persists.  I see many treatments help briefly but not change the long-term trajectory. This is common and points toward nervous system sensitization as a major contributor to stubborn pain. 2) What changes when pain becomes chronic Decades of research show living with chronic pain changes the body in measurable ways. These are not “in your head” in a dismissive sense; they are changes in neurobiology, perception, and regulation. Here are some examples to watch for if you want to reduce chronic pain: Altered brain maps: People with chronic pain often struggle to rapidly identify left vs. right side or to draw a limb accurately (common in complex regional pain syndrome). Sensory perception shifts: Body parts can feel “different” to the brain—bigger, smaller, fuzzier—because the brain’s representation has shifted. Regulatory dysfunction: Immune, autonomic, and pain systems become overactive producing unpredictable symptoms. Changed movement patterns: Pain and pain anticipation change how you move. The brain learns protective patterns that can reinforce pain long-term.Recognizing these patterns helps you and your clinician decide if the focus should be on retraining the nervous system to reduce chronic pain—not just fixing tissue or reducing immediate intensity. 3) Why many treatments don’t give lasting relief To reduce chronic pain you must understand which part of the problem a given treatment actually addresses. I break these into four categories: treatments that change pain intensity, treatments that address structure/mechanics, mind-body approaches, and nervous-system-specific interventions. Pain intensity tools: Analgesics, injections, nerve blocks, TENS. These can lower the immediate volume of pain—like turning down a stereo—but often don’t fix the faulty wiring causing the noise to return. Structural/mechanical treatments: Physiotherapy for joint stability, chiropractic alignment, surgery, weight loss. Essential when the problem is structural—but not sufficient when sensitization drives pain. Mind-body methods: CBT, meditation, journaling, apps like Curable. Useful for addressing thinking, fear, and stress, but alone can fall short when pain pathways are overactive. Nervous system retraining: Education + graded, neuroscience-based drills that directly target the altered neurobiology of chronic pain. 4) Evidence-backed treatments that target the nervous system When the nervous system is involved, evidence-based interventions focus on changing how the brain processes body signals. These methods are designed to rewire and desensitize the nervous system progressively and safely: Pain education: Understanding pain reduces threat and fear. Knowledge changes perception; when you know what is happening and why, your brain can reduce defensive responses. Graded motor imagery (GMI): A sequence of interventions (left-right discrimination, motor imagery, mirror therapy) proven useful in conditions like complex regional pain syndrome and other sensitized states. Sensory discrimination training: Peripheral “bottom-up” work that refines sensory maps—touch labelling, texture recognition, and precise sensory tasks. Motor retraining: Gentle graded exposure to feared movements, broken down into micro-steps to rebuild confidence. Mirror therapy: Visual feedback to re-align brain representation with actual movement and reduce perceived threat. Top-down approaches: Imagery, visualization, and cognitive tasks that change brain expectation and cortical processing. Combining bottom-up and top-down approaches is more powerful than either alone. The nervous system learns from both peripheral input and central expectation—so to reduce chronic pain we must retrain both directions. 5) What recovery actually looks like Recovery is individual. To reduce chronic pain successfully you should plan for a process, not a quick fix. Outcomes vary—some people become pain-free, others find pain becomes background noise, and many regain function and confidence even while some symptoms persist. Common recovery milestones include: Less fear around movement and activities More predictable day-to-day pain intensity Improved sleep and energy Increased ability to work and participate in valued roles A toolkit you can use for flare-ups for life Change requires time, patience, and daily practice—often only minutes per day. The brain didn’t rewire overnight; it won’t undo overnight either. But consistent, incremental practice creates new neural pathways that reduce chronic pain over weeks and months. 6) The recovery formula: the components you need to change pain longterm Based on the latest research,  The 16 Week Change Pain Academy pulls together these components to form a practical formula to reduce chronic pain: Precursors: Rule out red flags and clarify the type of pain (acute damage vs. chronic sensitization). Pain education: Learn what pain is and why it acts the way it does. Building Your Foundations: Sleep, stress, daily routines, pacing, and a flare plan. Retraining (bottom-up + top-down): Graded motor imagery, sensory discrimination, mirror therapy, and movement reassociation. Coaching: Guidance, accountability, and help tailoring the steps to your unique pain experience. Support & community: People who understand chronic pain and can give and receive help. Accountability: Small, regular check-ins to keep you advancing. All of these pieces together create an ecosystem where recovery can happen. Missing one piece makes the process slower or less effective. To reduce chronic pain, you don’t need every possible therapy—you need the right combination for your situation, applied consistently. 7) Precursors: what to check first Before starting a nervous-system-focused program to reduce chronic pain, make sure you’ve addressed the basics: See a physician to rule out red flags (serious pathology requiring immediate care). Confirm whether imaging or structural problems explain the pain. Before you begin on any pain recovery plan it is wise to ensure you are living/working in a safe environment.  Clarify your goals: what do you want life to look like when your pain improves? Only once those precursors are clear can you safely and effectively focus on retraining to reduce chronic pain. 8) Coaching and community: why they matter Coaching is not a luxury; it’s an active ingredient in many successful recoveries. A skilled coach helps you turn knowledge into daily practice, asks powerful questions, and holds you accountable. Community reduces isolation and provides practical tips, empathy, and the chance to learn from others who have reduced chronic pain. Support—whether from family, clinicians, or peers—affects outcomes. If you feel dismissed by your healthcare team, find supportive people who understand the biopsychosocial model of pain. 9) What to expect from a structured program A well-designed, evidence-informed program to reduce chronic pain will typically be: Structured and incremental—lessons and drills build slowly. Multimodal—education, retraining, sleep and stress foundations, pacing. Interactive—live coaching or group sessions plus peer support. Practical—daily, short brain retraining exercises that fit into real life. The 16 week Change Pain Academy is designed around these principles: science-first, practical, and supportive. They’re not a quick fix but a methodical path that gives you skills to reduce chronic pain long term. 10) Common obstacles and how to overcome them Two common traps slow recovery: “boom and bust” activity cycles and perfectionism. Boom-and-bust creates flare cycles—overdo one day, crash the next. Perfectionism leads to avoidance or all-or-nothing thinking. Both amplify pain by reinforcing threat beliefs and limiting gradual gains. To reduce chronic pain, replace extremes with pacing and compassionate persistence: set small goals, measure progress, and accept that incremental change compounds into meaningful improvements. 11) When to seek professional help If your pain is changing quickly, progressing, or accompanied by red-flag symptoms (significant weakness, sudden weight loss, fever, loss of bowel/bladder control), seek immediate medical care. Once red flags are excluded and pain is chronic or unexplained, consider a program or clinicians versed in pain neuroscience to reduce chronic pain effectively such as The 16 Week Change Pain Academy. 12) Final thoughts: hope + persistence Stubborn pain feels isolating, but the science is clear: nervous systems are adaptable. Even long-standing pain can change through targeted education, graded practice, and supportive coaching. My message—and this practical guide—is about understanding the biology, building daily habits that retrain the brain, and creating a support system that helps you persist. Recovery is a process, and each small, consistent practice rewires your nervous system toward safety and function. You can reduce chronic pain and build a life you enj

    Why Do I Hurt So Much? Episode 1/3

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Conversations about chronic pain management, the chronic pain experience and interviews with experts to inspire, motivate and change your relationship to pain.

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