Latest news with #ComplexRegionalPainSyndrome
STV News
28-07-2025
- Health
- STV News
'Chronic pain put my future on hold - I want the chance to take my life back'
A woman says her life has been 'ripped away' after being diagnosed with a rare chronic pain condition. Mairead Keen has lived with Complex Regional Pain Syndrome (CPRS) – a persistent, severe pain condition which is usually caused by injury – for eight years. At the age of 14, she suffered severe headaches, which doctors identified as a viral infection damaging her nerves, disrupting the signals travelling from the brain to the body. The CPRS diagnosis left the then-teenager confused as she had never heard of the incurable condition, which is estimated to affect 26 in 100,000 people. Now aged 22, Mairead feels like she is 'walking on glass' and that her future has been put on hold. 'I had a lot of plans when I was younger for what I wanted to do with my life', Mairead told STV News. 'That has all been ripped away from me. Now I live on painkillers and rarely get to leave the house. 'I only get one or two days every couple of months where the pain is easy to deal with. Other times I'm in bed or on the couch, with a lot of painkillers. 'It feels like a stabbing pain and an intense burning sensation. It started in my feet and my legs, they have always been the main point of pain, but a year after that spread all over my body. 'I am able to walk, but it just feels like I am walking on glass. Supplied The 22-year-old feels like she is 'walking on glass' and that her future has been completely put on hold. 'My stomach even hurts when I eat. It just makes me sad, there is just a lot of sadness.' For the first two years following her diagnosis, Mairead underwent numerous therapies with the help of NHS staff. However, after she started receiving care as an adult, a lot of her support network was taken away. The 22-year-old's mum, Marie Keen, believes there is 'no help out there' for people living with a chronic pain condition. Marie Keen told STV News: 'When Mairead was first diagnosed, she was in paediatric care, she got water therapy, physiotherapy and a psychiatrist. 'As soon as she turned 16, all that was taken away from her. She has never had physio since, and there is no support anymore. 'It feels like there is nothing in Scotland to help people like Mairead. There is just no help out there. 'My daughter is 22, but she feels like an 80-year-old.' Mairead is now raising money to undergo Calmare Therapy in Ireland. The treatment, also known as scrambler therapy, works by replacing pain signals with 'non-pain' information, potentially offering relief for various conditions like nerve pain, cancer pain, and opioid-induced pain. It involves applying electrodes to the skin around the painful area and delivering low-level electrical impulses that are designed to override the pain signals. The NHS has not yet approved it for routine commissioning due to insufficient evidence of its effectiveness and cost-effectiveness. But, the leading UK specialist clinic, the London Spine Unit, believe the treatment is an 'efficient and safe alternative for several different types of refractory chronic neuropathic pain, with a very rare possibility of adverse events'. Mairead hopes the therapy, which is available in the US, Australia, Ireland, Germany and Italy, will give her the chance to 'live a normal life'. 'We have tried different things over the last eight years, but nothing has ever worked', she explained. 'I feel like I am currently not living my life properly. We researched scrambler therapy, and it had a success rate between 80% to 90%. 'So I see this as a last chance to get my life back. I want to live a normal life. 'I want to have a family, a home and a job. All these simple things that were taken from me. 'It is a very lonely condition.' Public health minister Jenni Minto said: 'I am determined to improve care and support for people living with chronic regional pain syndrome. Everyone should be able to access the services they need, when and where they need them. 'We continue to work closely with the NHS to improve how services are accessed and delivered for patients, and we are making progress on the issues that people with lived experience of chronic pain have told us matter most to them.' Get all the latest news from around the country Follow STV News Scan the QR code on your mobile device for all the latest news from around the country
The Advertiser
20-07-2025
- Health
- The Advertiser
'Every day it's pain': chronic sufferers plead for help
Janina Wenzel is one of the estimated four million Australians suffering from chronic pain who feel unheard and invisible in the healthcare system. The Queensland woman has woken up every day for the last 30 years "feeling like she was hit by a semi-trailer", after suffering a wrist injury while working at a nightclub when she was 19. The now 48-year-old was diagnosed with Complex Regional Pain Syndrome, which causes significant pain in her right side. She wakes every day with nausea. "Every day it's pain, and sometimes it's worse, but most days I feel like I've been run over by a bus," she told AAP. Ms Wenzel has felt unheard by doctors for most of her life, many of whom have prescribed strong medications, with some having side-effects like burning her oesophagus. "So many specialists have just said 'it's in your head' but it's not in my head, you live a day in my life," she said. Her chronic pain has caused strain in her relationships, sparked severe depression and suicidal ideation. She's also under financial stress. "I think my family, my friends, would have an easier life, especially my parents, if they didn't have to care for me; their life would be so much easier," she said. She is one of nearly 5000 people in a nationwide survey by Chronic Pain Australia, which reveals the toll that chronic pain is taking. "To us, it's unfortunately not surprising ... but we're really concerned that things are getting much worse," Chronic Pain Australia chairperson Nicolette Ellis told AAP. Nearly three-quarters of sufferers experience mental health issues as a result of their pain, while nearly two-thirds are unable to work and experience financial strain. Some of those surveyed reported that waiting years for a diagnosis robbed them of their "dreams" and "life". About 63 per cent of chronic pain sufferers report strain on their family relationships as a result of their conditions. Some said their family thought they were just "lazy", while others were abandoned by relatives who did not believe they were sick. More than half have reduced independence, and a quarter are no longer able to drive. Multidisciplinary pain management and specialised care are important treatments to help improve the quality of life for sufferers, Ms Ellis said. But only 18 per cent of those surveyed received a referral to a multidisciplinary pain management clinic, and 30 per cent of those never secured an appointment. Ms Ellis said the report showed the path forward needs to provide better access to specialised care. "It's the most burdensome condition ... it's more burdensome than mental health, and mental health has a really big spotlight and then (chronic pain is) completely missing from national policy frameworks," Ms Ellis said. She called on the federal government to make treating chronic pain a national priority, change the coding system to recognise it as a health condition, and provide more localised funding to primary care Lifeline 13 11 14 beyondblue 1300 22 4636 Janina Wenzel is one of the estimated four million Australians suffering from chronic pain who feel unheard and invisible in the healthcare system. The Queensland woman has woken up every day for the last 30 years "feeling like she was hit by a semi-trailer", after suffering a wrist injury while working at a nightclub when she was 19. The now 48-year-old was diagnosed with Complex Regional Pain Syndrome, which causes significant pain in her right side. She wakes every day with nausea. "Every day it's pain, and sometimes it's worse, but most days I feel like I've been run over by a bus," she told AAP. Ms Wenzel has felt unheard by doctors for most of her life, many of whom have prescribed strong medications, with some having side-effects like burning her oesophagus. "So many specialists have just said 'it's in your head' but it's not in my head, you live a day in my life," she said. Her chronic pain has caused strain in her relationships, sparked severe depression and suicidal ideation. She's also under financial stress. "I think my family, my friends, would have an easier life, especially my parents, if they didn't have to care for me; their life would be so much easier," she said. She is one of nearly 5000 people in a nationwide survey by Chronic Pain Australia, which reveals the toll that chronic pain is taking. "To us, it's unfortunately not surprising ... but we're really concerned that things are getting much worse," Chronic Pain Australia chairperson Nicolette Ellis told AAP. Nearly three-quarters of sufferers experience mental health issues as a result of their pain, while nearly two-thirds are unable to work and experience financial strain. Some of those surveyed reported that waiting years for a diagnosis robbed them of their "dreams" and "life". About 63 per cent of chronic pain sufferers report strain on their family relationships as a result of their conditions. Some said their family thought they were just "lazy", while others were abandoned by relatives who did not believe they were sick. More than half have reduced independence, and a quarter are no longer able to drive. Multidisciplinary pain management and specialised care are important treatments to help improve the quality of life for sufferers, Ms Ellis said. But only 18 per cent of those surveyed received a referral to a multidisciplinary pain management clinic, and 30 per cent of those never secured an appointment. Ms Ellis said the report showed the path forward needs to provide better access to specialised care. "It's the most burdensome condition ... it's more burdensome than mental health, and mental health has a really big spotlight and then (chronic pain is) completely missing from national policy frameworks," Ms Ellis said. She called on the federal government to make treating chronic pain a national priority, change the coding system to recognise it as a health condition, and provide more localised funding to primary care Lifeline 13 11 14 beyondblue 1300 22 4636 Janina Wenzel is one of the estimated four million Australians suffering from chronic pain who feel unheard and invisible in the healthcare system. The Queensland woman has woken up every day for the last 30 years "feeling like she was hit by a semi-trailer", after suffering a wrist injury while working at a nightclub when she was 19. The now 48-year-old was diagnosed with Complex Regional Pain Syndrome, which causes significant pain in her right side. She wakes every day with nausea. "Every day it's pain, and sometimes it's worse, but most days I feel like I've been run over by a bus," she told AAP. Ms Wenzel has felt unheard by doctors for most of her life, many of whom have prescribed strong medications, with some having side-effects like burning her oesophagus. "So many specialists have just said 'it's in your head' but it's not in my head, you live a day in my life," she said. Her chronic pain has caused strain in her relationships, sparked severe depression and suicidal ideation. She's also under financial stress. "I think my family, my friends, would have an easier life, especially my parents, if they didn't have to care for me; their life would be so much easier," she said. She is one of nearly 5000 people in a nationwide survey by Chronic Pain Australia, which reveals the toll that chronic pain is taking. "To us, it's unfortunately not surprising ... but we're really concerned that things are getting much worse," Chronic Pain Australia chairperson Nicolette Ellis told AAP. Nearly three-quarters of sufferers experience mental health issues as a result of their pain, while nearly two-thirds are unable to work and experience financial strain. Some of those surveyed reported that waiting years for a diagnosis robbed them of their "dreams" and "life". About 63 per cent of chronic pain sufferers report strain on their family relationships as a result of their conditions. Some said their family thought they were just "lazy", while others were abandoned by relatives who did not believe they were sick. More than half have reduced independence, and a quarter are no longer able to drive. Multidisciplinary pain management and specialised care are important treatments to help improve the quality of life for sufferers, Ms Ellis said. But only 18 per cent of those surveyed received a referral to a multidisciplinary pain management clinic, and 30 per cent of those never secured an appointment. Ms Ellis said the report showed the path forward needs to provide better access to specialised care. "It's the most burdensome condition ... it's more burdensome than mental health, and mental health has a really big spotlight and then (chronic pain is) completely missing from national policy frameworks," Ms Ellis said. She called on the federal government to make treating chronic pain a national priority, change the coding system to recognise it as a health condition, and provide more localised funding to primary care Lifeline 13 11 14 beyondblue 1300 22 4636 Janina Wenzel is one of the estimated four million Australians suffering from chronic pain who feel unheard and invisible in the healthcare system. The Queensland woman has woken up every day for the last 30 years "feeling like she was hit by a semi-trailer", after suffering a wrist injury while working at a nightclub when she was 19. The now 48-year-old was diagnosed with Complex Regional Pain Syndrome, which causes significant pain in her right side. She wakes every day with nausea. "Every day it's pain, and sometimes it's worse, but most days I feel like I've been run over by a bus," she told AAP. Ms Wenzel has felt unheard by doctors for most of her life, many of whom have prescribed strong medications, with some having side-effects like burning her oesophagus. "So many specialists have just said 'it's in your head' but it's not in my head, you live a day in my life," she said. Her chronic pain has caused strain in her relationships, sparked severe depression and suicidal ideation. She's also under financial stress. "I think my family, my friends, would have an easier life, especially my parents, if they didn't have to care for me; their life would be so much easier," she said. She is one of nearly 5000 people in a nationwide survey by Chronic Pain Australia, which reveals the toll that chronic pain is taking. "To us, it's unfortunately not surprising ... but we're really concerned that things are getting much worse," Chronic Pain Australia chairperson Nicolette Ellis told AAP. Nearly three-quarters of sufferers experience mental health issues as a result of their pain, while nearly two-thirds are unable to work and experience financial strain. Some of those surveyed reported that waiting years for a diagnosis robbed them of their "dreams" and "life". About 63 per cent of chronic pain sufferers report strain on their family relationships as a result of their conditions. Some said their family thought they were just "lazy", while others were abandoned by relatives who did not believe they were sick. More than half have reduced independence, and a quarter are no longer able to drive. Multidisciplinary pain management and specialised care are important treatments to help improve the quality of life for sufferers, Ms Ellis said. But only 18 per cent of those surveyed received a referral to a multidisciplinary pain management clinic, and 30 per cent of those never secured an appointment. Ms Ellis said the report showed the path forward needs to provide better access to specialised care. "It's the most burdensome condition ... it's more burdensome than mental health, and mental health has a really big spotlight and then (chronic pain is) completely missing from national policy frameworks," Ms Ellis said. She called on the federal government to make treating chronic pain a national priority, change the coding system to recognise it as a health condition, and provide more localised funding to primary care Lifeline 13 11 14 beyondblue 1300 22 4636
Perth Now
20-07-2025
- Health
- Perth Now
'Every day it's pain': chronic sufferers plead for help
Janina Wenzel is one of the estimated four million Australians suffering from chronic pain who feel unheard and invisible in the healthcare system. The Queensland woman has woken up every day for the last 30 years "feeling like she was hit by a semi-trailer", after suffering a wrist injury while working at a nightclub when she was 19. The now 48-year-old was diagnosed with Complex Regional Pain Syndrome, which causes significant pain in her right side. She wakes every day with nausea. "Every day it's pain, and sometimes it's worse, but most days I feel like I've been run over by a bus," she told AAP. Ms Wenzel has felt unheard by doctors for most of her life, many of whom have prescribed strong medications, with some having side-effects like burning her oesophagus. "So many specialists have just said 'it's in your head' but it's not in my head, you live a day in my life," she said. Her chronic pain has caused strain in her relationships, sparked severe depression and suicidal ideation. She's also under financial stress. "I think my family, my friends, would have an easier life, especially my parents, if they didn't have to care for me; their life would be so much easier," she said. She is one of nearly 5000 people in a nationwide survey by Chronic Pain Australia, which reveals the toll that chronic pain is taking. "To us, it's unfortunately not surprising ... but we're really concerned that things are getting much worse," Chronic Pain Australia chairperson Nicolette Ellis told AAP. Nearly three-quarters of sufferers experience mental health issues as a result of their pain, while nearly two-thirds are unable to work and experience financial strain. Some of those surveyed reported that waiting years for a diagnosis robbed them of their "dreams" and "life". About 63 per cent of chronic pain sufferers report strain on their family relationships as a result of their conditions. Some said their family thought they were just "lazy", while others were abandoned by relatives who did not believe they were sick. More than half have reduced independence, and a quarter are no longer able to drive. Multidisciplinary pain management and specialised care are important treatments to help improve the quality of life for sufferers, Ms Ellis said. But only 18 per cent of those surveyed received a referral to a multidisciplinary pain management clinic, and 30 per cent of those never secured an appointment. Ms Ellis said the report showed the path forward needs to provide better access to specialised care. "It's the most burdensome condition ... it's more burdensome than mental health, and mental health has a really big spotlight and then (chronic pain is) completely missing from national policy frameworks," Ms Ellis said. She called on the federal government to make treating chronic pain a national priority, change the coding system to recognise it as a health condition, and provide more localised funding to primary care Lifeline 13 11 14 beyondblue 1300 22 4636
West Australian
20-07-2025
- Health
- West Australian
'Every day it's pain': chronic sufferers plead for help
Janina Wenzel is one of the estimated four million Australians suffering from chronic pain who feel unheard and invisible in the healthcare system. The Queensland woman has woken up every day for the last 30 years "feeling like she was hit by a semi-trailer", after suffering a wrist injury while working at a nightclub when she was 19. The now 48-year-old was diagnosed with Complex Regional Pain Syndrome, which causes significant pain in her right side. She wakes every day with nausea. "Every day it's pain, and sometimes it's worse, but most days I feel like I've been run over by a bus," she told AAP. Ms Wenzel has felt unheard by doctors for most of her life, many of whom have prescribed strong medications, with some having side-effects like burning her oesophagus. "So many specialists have just said 'it's in your head' but it's not in my head, you live a day in my life," she said. Her chronic pain has caused strain in her relationships, sparked severe depression and suicidal ideation. She's also under financial stress. "I think my family, my friends, would have an easier life, especially my parents, if they didn't have to care for me; their life would be so much easier," she said. She is one of nearly 5000 people in a nationwide survey by Chronic Pain Australia, which reveals the toll that chronic pain is taking. "To us, it's unfortunately not surprising ... but we're really concerned that things are getting much worse," Chronic Pain Australia chairperson Nicolette Ellis told AAP. Nearly three-quarters of sufferers experience mental health issues as a result of their pain, while nearly two-thirds are unable to work and experience financial strain. Some of those surveyed reported that waiting years for a diagnosis robbed them of their "dreams" and "life". About 63 per cent of chronic pain sufferers report strain on their family relationships as a result of their conditions. Some said their family thought they were just "lazy", while others were abandoned by relatives who did not believe they were sick. More than half have reduced independence, and a quarter are no longer able to drive. Multidisciplinary pain management and specialised care are important treatments to help improve the quality of life for sufferers, Ms Ellis said. But only 18 per cent of those surveyed received a referral to a multidisciplinary pain management clinic, and 30 per cent of those never secured an appointment. Ms Ellis said the report showed the path forward needs to provide better access to specialised care. "It's the most burdensome condition ... it's more burdensome than mental health, and mental health has a really big spotlight and then (chronic pain is) completely missing from national policy frameworks," Ms Ellis said. She called on the federal government to make treating chronic pain a national priority, change the coding system to recognise it as a health condition, and provide more localised funding to primary care Lifeline 13 11 14 beyondblue 1300 22 4636
Time Business News
11-06-2025
- Health
- Time Business News
CRPS: Understanding & Managing Chronic Pain Early
CRPS, which stands for Complex Regional Pain Syndrome, is a confusing and frustrating condition. It doesn't receive much focus, but it leads to a lot of pain and disruption for those who have it. Many times, CRPS starts after an injury, even if it's just a sprain or a tiny fracture. However, the body's reaction is not what is expected. Pain intensifies. Swelling lingers. Moving the body gets very hard or stops altogether. A major problem with CRPS is that it touches both the mind and the body. Chronic pain can hurt someone's mental health. Simple tasks like dressing, walking the dog, or typing on a keyboard now seem too hard or are no longer possible. You may feel more isolated when people don't understand what you're going through. People living with CRPS may start to feel that they have lost their identity. That feeling of being weighed down is very real. Anxiety can be something you feel all the time. After months or years of suffering, depression can start to affect a person. Having these emotions is normal, as illnesses often change everything in your lives. CRPS can be tricky to diagnose because it doesn't show up in standard tests like blood work or basic X-rays. Often, it's a diagnosis that comes after other causes have been ruled out. And because it isn't visible in the same way a broken bone is, it may be dismissed early on. Some people are told their symptoms are 'in their head' or just exaggerated. That kind of misunderstanding can delay treatment and cause deeper harm. Doctors who are familiar with CRPS rely on the patient's history and symptoms to diagnose it. Swelling, changes in skin color or temperature, and continuous, intense pain that seems out of proportion to the injury are key signs. Early diagnosis makes a real difference. The sooner CRPS is identified, the better the chances of slowing it down. Though there is no cure, taking action early can reduce the long-term effects. One of the first steps is finding the right medical team. Pain specialists, physical therapists, and neurologists can work together to create a treatment plan. Medication may help with nerve pain. Physical therapy can keep the affected limb moving. Occupational therapy can make daily activities easier again. Movement is important. As painful as it may be, staying active, within safe limits, can prevent further deterioration. Gentle exercises, guided by professionals, can prevent muscles and joints from stiffening permanently. Some patients find relief with alternative therapies. Mirror therapy, for instance, uses visual tricks to retrain the brain. Others may explore acupuncture, meditation, or biofeedback to manage symptoms. While these approaches don't cure CRPS, they can give people a greater sense of control. It's also worth paying attention to mental health. Counseling, support groups, and mindfulness techniques help many people cope. Talking to someone who understands the emotional side of chronic pain can be a powerful form of healing. CRPS can come with challenges that go far beyond the physical symptoms. The cost of treatments, time away from work, and the emotional strain of living with chronic pain can pile up. If the condition was caused by an accident, especially one involving negligence, there may be a path to compensation. Those living in areas with specialized legal resources may consider speaking with an attorney. For example, if you reside in the area, a California CRPS lawyer may be familiar with the condition and can help guide you through your options. They understand the depth of CRPS and how it affects every part of life, making it easier to present a clear case. Legal action won't erase the pain, but it can offer some peace of mind. Financial relief may help cover medical bills or replace lost income. More importantly, it can offer a sense of justice, something that matters when you've endured an experience that few truly understand. CRPS is undeniably hard to live with. It doesn't follow a predictable course, and recovery isn't always quick or complete. But people do find ways to live full lives despite it. Education is key. When people understand what CRPS is, they're better equipped to support someone who lives with it. And for those newly diagnosed, learning more can help them take an active role in their care. READ ALSO: Escape from Abuse: When Changing an Identity Saves a Life TIME BUSINESS NEWS
