Latest news with #chronicpain
SBS Australia
2 days ago
- Health
- SBS Australia
Chronic pain sufferers feel dismissed by healthcare professionals
Chronic pain sufferers feel dismissed by healthcare professionals Published 21 July 2025, 8:12 am Around four million Australians of all ages suffer from chronic pain. Many say they feel unheard and invisible in the healthcare system. Experts are calling for national investment in the space, including a holistic care approach to deal with often complicated causes.
SBS Australia
2 days ago
- Health
- SBS Australia
Nelli lives with chronic pain. It took her 20 years to find the right help
Nelli Stevenson has been living with chronic pain since she was a teenager — but it has taken her many years, and a serious medical emergency, to find the help she needed. Stevenson, 37, started experiencing chronic pelvic pain, along with a nerve pain called sciatica, when she was around 14 years old. These conditions later worsened after the birth of her child, and became chronic around three years ago. "I live with chronic persistent pain. I've had several medical professionals tell me I'll likely be in pain for the rest of my life," she told SBS News. "There is only so much they can do for me surgically. So, I manage my pain on a day-to-day basis through a number of physical interventions, as well as medical interventions as well." Stevenson works for a community legal service with flexible arrangements, and says she is fortunate to have access to a specialist GP and team who support her physical therapy and pain management. "However, it took me about 20 years of pushing through the medical system, constantly advocating for myself and fighting to be taken seriously, to be able to find that group of people," she said. This started in her late teens. "I was told, like most people with pelvic pain, that it's just part of being a woman, it's part of your period. I was gaslit for several years," she said. This had serious consequences. At one point, Stevenson says she had normalised the chronic abdominal pain she was experiencing that she didn't notice her appendix had ruptured. "I didn't present to hospital until 12 days after it had happened," she said. Stevenson ended up in ICU and needed two major surgeries to save her life. She says these caused significant scar tissue, which added to her chronic pain. She said she has heard many stories of late diagnosis, misdiagnosis and gaslighting from the chronic pain community. "They [medical professionals] aren't taking seriously these people who are saying, 'I cannot live like this anymore. I need more help.'" Chronic pain is taking longer to diagnose in 2025, according to a new report from peak consumer body Chronic Pain Australia . The 11th edition of its National Pain Survey, released on Monday to kick off a week-long awareness campaign, has revealed what it calls a "devastating national crisis" marked by diagnosis delays and a severe mental health toll. Waiting for a diagnosis Chronic pain is a common and complex condition characterised by persistent pain experienced on most days of the week, according to the Australian Institute of Health and Welfare. Approximately one in five Australians, or 3.6 million, live with chronic pain. However, Chronic Pain Australia believes the figure is higher. "That figure came from a study that was done about 15 years ago," Chronic Pain Australia chair Nicolette Ellis said. "What we're predicting chronic pain is sitting at in [terms of] prevalence is about four million Australians in this day and age, and [this is] projected to go up to five million in 2050." Of the almost 5,000 survey respondents, many had multiple conditions, including pain, joint pain and nerve pain, often experienced at the same time. Over half (54 per cent) of respondents reported waiting more than two years for a diagnosis, and 44 per cent waited over three years. This has increased from 42 per cent waiting over three years in 2024, and 41 per cent in 2023. Mental health impacts — and a 'pervasive' stigma Ellis said delayed diagnoses can contribute to the "vicious cycle" of chronic pain, including mental ill health. "For a lot of people, it takes away their identity, increases their mental health issues … and that's because of [what] pain can take away," she said. "If you're waiting for a diagnosis, typically you lose function. That might be reduced hours at work, or it might be leaving the workforce altogether." The report revealed 74 per cent of respondents had experienced mental health impacts, with 87 per cent experiencing sleep disturbances. Among other impacts was 63 and 59 per cent of respondents who experienced strain on family relationships and friendships. Stigma around chronic pain is "pervasive", according to the report, which found 74 per cent reported feeling ignored or dismissed. Ellis said this can come from health professionals along with friends, family, and community members. However, reported stigma from health professionals was higher than overall levels. "Many people feel gaslit or stigmatised by health professionals — that this is all in their head and it's not a true condition," she said. Calls for more complex care Despite the complex nature of chronic pain, the report found access to appropriate multidisciplinary and specialist care is falling short. Only 18 per cent of respondents received a referral to multidisciplinary pain management, and 30 per cent of those referred never secured an appointment. Ellis said access to multidisciplinary care is limited and dependent on location. "If you're in a metropolitan area, usually you can get into a tertiary or hospital-based pain clinic. But they have massive wait lists," she said. "Access to that kind of care is very limited." Chronic Pain Australia has been advocating for integrating multidisciplinary care programs into primary care settings. Ultimately, it wants to see chronic pain recognised as a condition in its own right — and made a national health priority. "Currently, we don't recognise pain as a condition in its own right; we recognise it as a symptom. What that means is that not only is chronic pain invisible to society, it's invisible in our health system data and in our policies," Ellis said. Ellis said recognising chronic pain in its own right would increase awareness of the condition, to guide adequate funding and resources. SBS News has contacted the federal health department for comment. It's understood the latest report will be presented to parliament later this week. For Stevenson, having access to early diagnosis and complex care can make an "extraordinary difference". "It means that someone who may otherwise be bedridden for weeks and weeks on end can actually participate in society, can maintain a healthy work-life balance, and can go about their days as a person living as pain free as possible, which surely we all deserve."
SBS Australia
3 days ago
- Business
- SBS Australia
SBS News in Filipino, Monday 21 July 2025
The Prime Minister pledges a year of delivery with his policy agenda, as Parliament resumes. A survey of 5,000 Australians reveals the toll of chronic pain. Tourism is a major pillar of the Philippines' economy, contributing 8.9% to the national economy and providing 6.75 million direct jobs to Filipinos. PAKINGGAN ANG PODCAST SBS Filipino 21/07/2025 07:57 Filipino 📢 Where to Catch SBS Filipino 📲 Catch up episodes and stories – Visit or stream on Spotify , Apple Podcasts , Youtube Podcasts , and SBS Audio app.
Daily Mail
3 days ago
- Health
- Daily Mail
EXCLUSIVE The truth about 'suicide headaches' and the bizarre treatments I tried in search of a cure
Tom Zeller Jr has done just about anything to get rid of his headaches. He's chugged 60 glasses of water in a day, inhaled oxygen straight from the tank and even tripped on magic mushrooms on top of the western Montana mountains. The 56–year–old science journalist was diagnosed about three decades ago with cluster headaches, debilitating headaches that strike randomly and drag out for weeks or months at a time. While it could be years between attacks, they return as fast as a lightning strike, with Zeller likening them to resting your hand on a hot burner and not being able to take it off. Zeller told 'They're excruciatingly painful. The tend to come on really, really quickly, within a matter of seconds. You don't usually have a warning and they will knock you down to the floor until they're over.' Zeller, who lives in Montana, spent much of his adult life suffering attacks up to four times a day for months at a time until they suddenly disappeared. His clusters have slowed in recent years, but like the 1 in 1,000 Americans with the disorder, Zeller waits for the next attack with limited tools at his disposal. In his newly released book, The Headache: The Science of a Most Confounding Affliction – and a Search for Relief, Zeller detailed his decades–long search for cluster headache relief, along with the wackiest things he's tried to quell the pain. 'I never wanted to write this book, to be honest. I did not want people to know I had headaches. It's just terrible to be seen in this way,' Zeller told 'But I also felt like if you're going to write a book, they say, "Write about what you know." I realized that I know headaches.' Cluster headaches are extremely painful and strike quickly in frequent attacks, or 'clusters,' lasting weeks or months at a time, earning the grim nickname 'suicide headaches.' The disorder usually causes sharp and stabbing pain in or around the eye, restlessness, tears and eye redness, forehead sweating, swelling around the eye and eyelid drooping. While a close relative of migraines, they're far less common. About 0.1 percent of Americans have had a cluster headache attack at some point in their lives, while 15 percent – most of whom are women – have migraines. For Zeller, the attacks drove a wedge in his journalism career, often forcing him to 'retreat from opportunities in the newsroom.' 'It's not easy. The book talks about how any sort of headache disorder is kind of a drag on the momentum of your life. They're always slowing you down,' he said. 'When I wasn't having the headaches, I felt like I was pretty bold and pretty accomplished as a journalist. But when the headaches would come on, I would sort of disappear and I would work from home a lot. 'There's a lot of stigma attached to headaches in a weird way. I tried very hard to make sure that no one knew that I had these headaches. You start to hide and that meant hiding from opportunities at work too.' Throughout the book, Zeller detailed a laundry list of unorthodox treatments he tried or researched. 'I was being ground down by the relentless injections, self–administered into an abdomen bruised and pockmarked by previous jabs, and overuse of the medication was likely driving an endless cycle of rebound attacks,' he wrote in his book. 'Given this unappealing tableau, why not shrooms?' Psilocybin, the active compound in magic mushrooms, has been shown to alter how the brain processes and perceives pain signals and is thought to reduce inflammation. He's also tried inhaling capsaicin, an extract in chili peppers that gives them their signature heat. Some research suggests it helps desensitize nerve fibers in the nasal passages that transmit cluster headache pain to the brain. Zeller also rented oxygen tanks from a welding supplier as a 'really fast way to abort a cluster headache attack.' 'I also remember a forum saying that if you just tried to chug like 60 glasses of water a day, or some absurd amount, it would cure your headaches. I was willing to try, but all I did was visit the toilet a lot with headaches,' he recalled. Zeller said many patients with cluster headaches have to rely on bizarre hacks because of the lack of medications geared specifically toward their condition. 'The thing that surprised me most, and what probably prompted the book, was that so little research was out there on primary headache disorders,' Zeller explained. Patients are often prescribed beta blockers, antipsychotics, antidepressants and other drugs manufactured for other illnesses, as they can treat headaches in some people. Recently, the advent of CGRP drugs has changed the picture. Approved by the FDA in 2018, these preventative drugs block or reduce the effects of CGRP, which causes migraine and cluster headache pain. 'A lot of times you'll find a drug or remedy that does kind of work, but the body adapts. We're very plastic, and over time, those things start to wane,' Zeller said. Zeller uses the CGRP medication Emgality, the only FDA approved medication specifically designed for cluster headaches and migraines. The cluster headache dose of Emgality is significantly higher than the migraine dose – 300 milligrams compared to 120 milligrams – and both versions are given through a subcutaneous injection just under the skin. 'Cluster headaches are their own unique animal, so once the headaches start happening, it does seem to be pretty hard to stop,' Zeller revealed. 'But I think three times in I'm sort of convinced that the CGRP blockers work for me to stop a bout from happening.' Like migraines, cluster headaches often become less frequent and severe with age, which some research suggests could be due to hormonal fluctuations and altered blood vessel function in the brain. Zeller's clusters in recent years have slowed and can now fall years apart, but he's far from being in remission. 'I don't think I, or anyone really, is out of the woods yet,' he said. For now, Zeller said he hopes his new book will help improve cluster headache awareness and provide a sense of community for readers with the condition. In his research, he spoke with several cluster headache and migraine patients who at first were 'guarded' and wary of speaking about their experience over fears of it being trivialized. But throughout the interviews, they became excited because they had 'this pent–up desire to just unload about it.' 'I hope they feel seen by the book,' Zeller said. 'Someone out there is paying attention and you can take heart in that, and if you're able to buy time between painful bouts, I hope that you know the book will be affirming in that you know you're not alone.' The Headache: The Science of a Most Confounding Affliction – and a Search for Relief is available on Amazon, Barnes & Noble, Target and others.
WebMD
5 days ago
- Health
- WebMD
10 Things I Wish People Knew About Life With Psoriatic Arthritis
When I first heard the words 'psoriatic arthritis,' I didn't fully understand how much it would change my life. Like most people, I thought arthritis was something that happened when you were older. I assumed it was mostly about hand pain, maybe stiff knees, a little trouble getting up in the morning, nothing too life-changing. But what I've come to learn is that psoriatic arthritis is a full-body, life-altering, invisible illness that reshapes how you move through the world. And honestly? Most people don't really understand it. I don't say that with bitterness. I say it because I used to be one of those people. And now, after years of living with PsA, I find myself wishing there was a little more awareness, a little more patience, and a little less guessing. Here are 10 things I wish people knew about life with psoriatic arthritis. 1. It's More Than Just Joint Pain When people hear 'arthritis,' they tend to picture sore knees or aging hips. They don't picture someone in their 20s struggling to open a water bottle or hold up a gallon of milk. Psoriatic arthritis affects my whole body. The joint pain is real and it shows up in my hands, my knees, my spine, but it's only one part of the story. PsA also comes with skin flares, tendon pain, eye inflammation, brain fog, and fatigue so heavy it feels like gravity tripled overnight. I remember one morning when I couldn't button my jeans because my hands just wouldn't work. I sat on the floor and cried, not because of the pain, but because I couldn't even get dressed by myself. No one prepared me for the everyday ways my body would start working against me and how much more help I would need. 2. It Can Happen at Any Age When I tell people I have arthritis, I often get the same surprised reaction: 'But you're too young to have that!' Psoriatic arthritis doesn't check your birthdate before it shows up. I was diagnosed in my 20s, at a time when I was supposed to be building momentum, chasing opportunities, and saying yes to life. Instead, I was learning how to pace myself and how to sit with loss. I get why people are surprised because our culture tends to associate arthritis with the elderly. But chronic illness doesn't have an age limit. Sometimes, it walks into your life just as you're getting started. 3. It's an Invisible Illness Some days, I can look completely fine while my body is quietly unraveling underneath. One time I pushed through a brunch with friends while my hips and lower back were screaming. I smiled through the meal, made small talk, but spent the entire time wondering if I'd be able to walk back to my car without limping. PsA is invisible. You can't see my pain, you can't see my fatigue, and that can make it harder for people to understand. There's no visual marker that says, 'This is hard for me today.' Sometimes, the hardest part isn't the pain, it's accepting my limitations. 4. Fatigue Is Not Just Being Tired There's tired, and then there's psoriatic arthritis fatigue. This isn't the kind of tiredness that a nap can fix. It's a deep, body-wide exhaustion that can sneak up without warning and without a reason. I've had days where brushing my hair felt like a full workout. I've had days where I couldn't keep my eyes open after a simple grocery run. Often, I sit in my car gathering the energy just to go from the car to the front door. The worst part? Sometimes I'll wake up even more tired than when I went to bed. There's no guaranteed reset from even the best sleep. 5. Flare Days Are Real I wish people understood how wildly unpredictable psoriatic arthritis can be. One day, I can feel almost normal. The next, I might not be able to get out of bed. The swings are fast, and they don't always give warning. I've had to cancel plans at the last minute, leave grocery carts half-full, and cut workdays short because a flare came out of nowhere. It's not about flakiness, it's about a body that makes the rules without telling me. I have to adapt accordingly and fast. Sometimes I feel guilty or angry, but mostly I just wish my body would keep me in the loop. 6. The Mental Toll Is Heavy Living with PsA is more than a physical challenge. It's also an emotional one. There's grief over the things I've had to let go: hobbies I can't do anymore, spontaneous trips I no longer plan, long walks I have to think twice about. There's anxiety about when the next flare will hit. Wondering if my medication will stop working or worrying if I will be OK the day of my wedding. Will I be able to dance that day? Or will I be sitting that one out? I've sat with this grief quietly. I've cried in parking lots. I've worked hard to find joy where I can. Therapy, community, and honest conversations have helped, but this is a mental load I carry every day. 7. Medications Help, but They're Not Magic When people hear I'm on medication, they sometimes assume I'm 'better.' I understand why — it's comforting to believe that medicine fixes things. But the truth is medications can help manage symptoms, but they don't cure psoriatic arthritis. Even on the best days, I'm still working around pain, stiffness, and fatigue. Finding the right medication is often a long, exhausting process. I've switched treatments, dealt with side effects, waited months for something to finally (maybe) work. There's progress, but I'll never be back to 'normal.' 8. It Can Impact Work and Relationships PsA doesn't clock out at 5 p.m. It touches every part of life. I've worried about being seen as unreliable when I needed to take time off or calling out sick too much. I've fought with companies to get accommodations that allow me to do my work. I've watched friendships slowly fade because I had to say 'no' too many times in a row. But I've also been lucky to have people who stayed. Friends who texted 'no pressure, but I'd love to see you.' Co-workers and managers who believed me. Those people have made all the difference. 9. Self-Advocacy Is Constant Living with psoriatic arthritis means I have to speak up for myself — a lot. Whether it's asking for accommodations, pushing for treatment approvals, or simply explaining what I need to my partner, self-advocacy has become part of daily life. Sometimes it's empowering. Other times, it's exhausting. I've had to fight insurance companies, challenge assumptions, and remind myself that I'm worthy of care. There's a weight to always having to explain yourself, but the more we talk about it, the easier it becomes for the next person. 10. What Actually Helps People often ask how they can support someone with a chronic illness. The answer is simple: Believe us. Believe us when we say we're tired, even if we look fine. Believe us when we cancel plans, even if we were OK yesterday. Believe us the first time we say we're struggling. What helps the most isn't grand gestures – it's flexibility, patience, and the quiet message that we're not a burden. A 'thinking of you' text. An invitation with no pressure. A friend who sticks around. Those small things are what carry me on the hardest days. Final Thoughts Living with psoriatic arthritis has changed me. It's slowed me down in ways I didn't expect. It's taught me to listen to my body, to be patient with myself, and to ask for help even when it's uncomfortable. There's grief in this life, but there's also gratitude – for the people who understand, for the days when my body feels manageable, for the moments I still get to enjoy. If you've made it this far, thank you for taking the time to understand a little more about what life with PsA looks like. And if you're living this life too – I see you, I get it, and you're not alone.
