'I struggle every day with the loss of my former life': what it's like to live with chronic pain

One 43-year old woman from the US describes what it is like to have chronic, overlapping pain. While Long Covid helped to highlight the issues surrounding chronic illness, many people have struggled with chronic pain for years.The US Institute of Medicine recognized a group of chronic pain conditions in a 2011 report. They mainly affect women and often co-occur. The US Congress referred to them as chronic overlapping pain conditions. They include vulvodynia/temporomandibular disorder, myalgic and chronic fatigue syndromes, temporomandibular disorders and myalgic encephalomyelitis/chronic tired syndrome, myalgic encephalomyelitis/chronic fatigue, myalgic encephalomyelitis/chronic fatigue, irritable bladder syndrome, interstitial cystitis/painful fibromye, chronic tension-type and headaches and chronic low back pain.More than 700 people from 32 countries responded to a reader's call asking about their experiences with living with chronic, overlapping pain conditions.Although it is not a scientific survey of chronic pain conditions, analysis of callout responses revealed that 504 people also claimed to have an auto-immune disorder. Of 758 people who responded to the callout, 37% said they were diagnosed with long Covid. Another 12 people claimed they believed they had long Covid, but had not been diagnosed. 27 of the 37 Covid patients (73%) also claimed they had been diagnosed with at least three chronic pain conditions. About three quarters of respondents were female and one quarter were male.Many people shared similar stories of how their life-threatening pain conditions were not treated seriously by healthcare professionals. It can also be difficult to receive proper diagnosis and treatment. Many people mentioned the negative effects of living with undiagnosed conditions. However, compassionate care and treatment can lead to very positive outcomes.Ten readers share their stories of living with chronic pain.Maybe a brief stint as a patient with a chronic illness would help you to empathize.Some cases took years to prove I suffered from cross-diagnoses. It took me five years to be diagnosed as having Parkinsons. I was just 29 when I was diagnosed. Specialists don't always view chronic illness or pain with empathy, especially if there aren't concrete test results. They understood that I had cancer. You get random back pain and up to three migraines per week. It's not so. Because chronic illness is so draining, there are constant explanations that people expect for inability to be normal every single day. It is frustrating and exhausting to not have a unified voice between specialists. Many people still consider chronic pain and illness malingering, both within and outside medicine. Maybe a brief stint as a patient with chronic illness would help you to empathize. Kate, 49, is a former journalist who now works in mental healthcare, Melbourne, Australia. She has chronic migraines, chronic tension-type headaches, ME/CFS and chronic low back pain.I've had GPs that clearly don't know anything about CFS/ME.Mel: My pain isn't believed because I'm a young woman.Despite having chronic migraines that caused me to be unable to work full-time, I waited seven long years before I was able access treatment for my temporomandibular disorder (TMJD). After I had disclosed that I also had mental health issues, I was advised to seek treatment. Otherwise, the condition would recur. Although I have been suffering from chronic fatigue syndrome (CFS/ME for about five years, it has never been diagnosed. There is no treatment. After being referred by a friend suffering from the same condition, I was referred to an integrative care centre that offers support for living with it. However, I had to ask for the referral. My pain level and debilitating effects of these conditions on me as a young woman isn't acknowledged because they aren't believed. I've had GPs that don't know anything about CFS/ME and who also don't believe it exists. My GP refused to give me a Covid vaccine, despite me having been protecting myself since the outbreak of the pandemic. I was afraid of the long-term effects of Covid. Mel, 27 years old, lives in Glasgow, Scotland, UK with ME/CFS and irritable bowel syndrome.I hope that long Covid's concern can lead to more understanding.I feel pain almost every day, struggle with energy, and have gradually adapted to it. Conventional doctors are unable to treat me because they only see the symptoms. My symptoms were dismissed for 30 years. Recently, I have come to terms with my condition a little better. They can only prescribe medication to treat a specific symptom. They don't understand the complexity and interconnectedness of what I am dealing with. Their drug arsenal can only provide temporary relief. I've had to learn how to live my life at my own pace and not to push myself too much. My diet is controlled, I drink very little alcohol and take a break every two hours. My work is tailored to my body's needs. Although I find Tai Chi and yoga helpful in managing my energy levels, nothing has ever significantly reduced my constant pain in my abdomen and upper body. These conditions/symptoms are not difficult to deal with. The most frustrating aspect is the inability of doctors or others to understand the situation, even to listen. I hope that long Covid's concern can help bring more understanding, compassion, and help to the many thousands of people who have had to deal with the same symptoms for years. To understand the true nature of people suffering from viruses or other causes, the medical profession must look beyond drugs and connect with different practitioners. Although we have made great strides since the days of the yuppy virus, there are still many things to do. Nick, a teacher from Devon, UK, has chronic migraines, chronic tension-type headaches, ME/CFS and chronic low back pain. He also suffers from chronic neck and shoulder pain.I'm sure there are many like meKat: We (fellow long-haulers), don't know how long we'll be ill.I am 41 years old and have been disabled since March 2020 when I was diagnosed with Covid. I used to have two jobs. In my spare time I went hiking and walked my dogs. I am now in a wheelchair. Although the long Covid diagnosis was simple to obtain, I have not received any treatment. My long Covid clinic sent me an email to inform me that they are unable to treat me because I am too sick. In October, I was diagnosed with chronic thromboembolic disorder and was referred by the Pulmonary Hypertension Service. It was caused by a massive pulmonary embolism. We (fellow long-haulers), don't know how long we'll be ill, or if we'll get better. I don't want to be disabled, I want my life back. Although I don't suffer from anxiety, I have been depressed since I became largely housebound. Is there any support? I wasn't sick. I had a job, a life and was due to purchase our first home. Now we are stuck. Every day I feel the loss of my old life. There are many people just like me. We need treatment and management. These are the answers. Kat, 41 years old, Hampshire, UK, has long Covid and chronic heart disease.After receiving Covid, everything became more apparentIt's been a difficult 12 years. I still don't know if I am correctly diagnosed. I am almost certain that I have ME/CFS. Before testing became available, I was diagnosed with Covid in the early 2020s. Although I am being told to take vitamins right now, I was prescribed a steroid last year and an antiviral. I felt much better but can't find a doctor who will prescribe me the same medications. After getting Covid, everything became more severe. I experienced new symptoms, including shortness of breath and loss of taste and smell. These symptoms were ongoing for 15 months. It can be frustrating to have symptoms only treated by specialists and not the whole picture. Rose, 57, is a former Florida legal secretary. She has long Covid, chronic migraines, endometriosis and fibromyalgia.According to the doctor, my knees were hurting because my parents were divorcingGillian, 45: I don't want to live on painkillers. They don't always work and they make my life miserable.At the age of 19, I was diagnosed as having ankylosing Spondylitis (AS). At 28 I was diagnosed with Crohn's disease and at 29 I was diagnosed as having osteoporosis. It took me a while to be diagnosed with AS. It was around eight years ago that I first experienced it as a child. My favorite sport was swimming, but I experienced a terrible pain in my sitting bones. I couldn't walk and had no choice but to be carried. Nobody knew what was wrong. I experienced strange pains like these every now and then throughout my childhood. My doc checked me for cancer and told me that my knees were hurting because my parents were divorcing. My GP assured me she would find the problem and I was finally diagnosed with ankylosing spondylitis. My sister was also diagnosed, and we were both treated in Toronto by the most skilled rheumatologist. He really helped us all. It has been somewhat difficult to find the right treatment. I mainly take non-steroidal antiinflammatory drugs (NSAIDs), and I swim a lot. It is important to keep moving. Crohns is a serious condition that can be painful. Although Crohns can be very painful, I have been told that mine is mild to moderate. I don't take any medication for it. The problem is the pain. Painkillers don't always work for me and I find it hard to live without them. I use my brain to make a living and don't want to lose that. They are sometimes necessary for me, and it is not always easy to reach the GP. I was asked if I was looking for drugs and I was told that yes, that is why I came to you. Recently, I was suffering from rib pain for half of the night. It hurts to breathe. I have to lie down and sit up. It's a nightmare. What are you going do? I'm going to take more pills and continue my day. Gillian, 45, a writer from Canada, lives with IBS, chronic low-back pain, ankylosing Spondylitis, and Crohn's disease in Somerset, UK.All of my chronic diseases have been identified and diagnosed by my female healthcare team.In 2013, I was first diagnosed with various conditions. I received a definitive diagnosis of endometriosis in 2019 after a laparoscopy. This was also the year that I switched to an all-female general practitioner clinic. Before I changed GPs in 2019, I saw another misogynist. I quote: The problem is that women can do medicine, but once they finish their residency, they want to go on to maternity leave. I was then sent to a rehabilitation gym to strengthen my joint. Although I saw some improvement after about a year, my feet and ankles still hurt. I was referred to another rheumatologist by my current GP. I had a nuclear scan and was diagnosed with rheumatoid (RA) by the doctor. Now I'm 22 and am on so many pills, that if anyone shook me, I would probably rattle. My hypermobility causes my knees to hurt all the time. However, my RA is largely under control and I have been taking a contraceptive pill (very expensive) since age 14 and having a laparoscopy at 20. My endometriosis is also well managed. Because I want to make sure that one woman doesn't feel as ignored and dismissed as I felt in those years, I'm now entering womens healthcare. All of my chronic diseases have been identified and treated by my female healthcare team. I can multiply two and two together to make four. I am now in a better position. Allie, 22-year-old student midwife from Melbourne, Australia, has endometriosis and temporomandibular joints disorder, vulvodynia. She also suffers from joint hypermobility syndrome.Fibromyalgia is stigmatized and many people believe it is all in their heads.Kulvinder, 55 years old: I've stopped trying to explain to people the effects of fibromyalgia on my life and mental state. It's easier to pretend that everything is fineIn 2019, I was diagnosed as having fibromyalgia. Prior to that, I was a great podiatrist in the NHS. Although I enjoyed being active, and I loved long walks, and skiing, when I started experiencing pain in my neck, wrists, and back, it was difficult for me to continue my work as a podiatrist. I was unable to accept the diagnosis, the fatigue, brain fog and chronic pain that it brought and often cried. My independence and self-reliance had changed to being dependent on my husband. My mental health was in crisis and it was difficult for me to get out of bed every day. After two years, I had to retire from ill-health and start living on a small pension. Although Cornwall has helped my mental health, I feel like someone has taken my life. My previous GP was wonderful and supportive. People may assume that I'm fine. But what they don't see is my pain. They see how I have to lie down when my neck hurts or that it takes me three to walk again. I stopped explaining to people how my fibromyalgia affected my life and mental state. It is easier to pretend that everything is fine. Fibromyalgia is stigmatized and many people believe it is just a matter of luck. Kulvinder, 55 years old, lives in Cornwall, UK with fibromyalgia.Endometriosis was diagnosed after 20 yearsIt took me 20 years to be diagnosed with endometriosis. I was 31 at the time. One doctor told me that my excruciating pain was due to the fact that I was embarrassed to be a female. Although I didn't have any prescription painkillers, I was sent immediately for major surgery. I have also had herniated neck and back discs. Physical therapy and exercises are used to treat it. I take fluoxetine as a prophylactic for my migraines. I have IBS and I follow a diet that restricts certain enzymes. I also avoid dairy products and many vegetables because of my abdominal adhesions. Doctors have told me that I have a high threshold for pain and tend to underestimate the severity of my symptoms. Cynthia, a retired professor from Sweden, has endometriosis and chronic migraine. She also suffers from irritable bowel syndrome (temporomandibular joints disorder), chronic low back pain, herniated cervical discs, and abdominal adhesions.I was able to find a pain clinic in a hospital that listened.Nicolas, 43 years old: I was a professional saxophone musician and was stopped by a promising career.I am a 43 year-old male with nearly 16 years of chronic pain, fatigue and fibromyalgia. I was a professional saxophone player, but my career took me out of the game. In 2003, I noticed lower back pain, neck pain, and tensions. However, this was due to too many activities, including practicing the instrument and playing in concerts. Also, I had a part-time job at a supermarket. In July 2005, I felt like a thousand knives were piercing my spine as I tried to get out of bed. I saw many doctors and physiotherapists over the next 18-months, which was quite distressing. It's all in your head. Everyone has pain. You have to get over it. To look at you, everything seems fine. I kept seeing doctors and tried to find alternative medicine. There were many, including the most benign and harmless wellness practitioners, as well as the most corrupt gurus. It was all a waste of money, but it had little or no effect. 2013 was the year I discovered a pain clinic in a hospital that listened to me and diagnosed me with central sensitive syndrome, fibromyalgia. It was like feeling a sense of relief to know that it wasn't in my head and that the pain was real. I also needed mental health support and medical follow-ups. Nicolas, a 43-year-old musician and sound engineer from Brussels, Belgium, has fibromyalgia. He also suffers from chronic low back pain.