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

“The endless cycle of seeing doctors and never seeing any change or improvement” is how one 43-year-old woman from the US described what it’s like to live with chronic overlapping pain conditions. Long Covid has helped highlight issues surrrounding chronic illness but many people around the world have had to cope with debilitating symptoms of chronic pain for years, often without receiving adequate professional help.

A 2011 report by the US Institute of Medicine recognised a cluster of chronic pain conditions that predominantly affect women and frequently co-occur. They were dubbed “chronic overlapping pain conditions” by the US Congress and include: vulvodynia, temporomandibular disorders, myalgic encephalomyelitis/chronic fatigue syndrome, irritable bowel syndrome, interstitial cystitis/painful bladder syndrome, fibromyalgia, endometriosis, chronic tension-type and migraine headache and chronic low back pain.

A reader callout asking for experiences of living with chronic overlapping pain conditions received more than 700 responses from people in 32 countries.

Though it’s not a scientific survey, an analysis of the callout responses shows that 504 people with a chronic pain condition also said they have been diagnosed with an auto-immune disease. Out of 758 responses to the callout, 37 people (5%) said they had been diagnosed with long Covid. A further 12 people said they thought they had long Covid but hadn’t had a diagnosis. Of the 37 people who had a long Covid diagnosis, 27 (73%) said they have also been diagnosed with three or more chronic pain conditions. About three-quarters of the respondents identified as female, and a quarter male.

Many described similar experiences of how life-affecting pain conditions were often not taken seriously by health professionals and how it can be difficult to get proper diagnosis and treatment. The impact of living with undiagnosed pain conditions on people’s mental health was brought up in many of the replies, though when patients received treatment and compassionate care there could be very positive results.

Here, 10 readers share their experiences of living with pain conditions.

‘Perhaps a stint in the shoes of a chronically ill person would assist in the empathy stakes’

It has taken years in some cases to “prove” that I suffer from crossover conditions – it took five years to be diagnosed with Parkinson’s, as I was only 29. Having chronic illness and pain is not necessarily viewed with empathy by specialists when there are no concrete test results. I have had cancer – that they understood. Random back pain and two to three migraines a week? Not so much. Chronic illness is partly so draining because of the constant explanations people expect for an inability to be “normal” every day. A lack of comms between various specialists is frustrating and tiring. Chronic pain and illness is still seen as malingering by many, within medicine and without. Perhaps a stint in a person who is chronically ill’s shoes would assist in the empathy stakes. Kate, 49, former journalist who works in mental health, Melbourne, Australia – lives with chronic migraine, chronic tension-type headache, ME/CFS, chronic low back pain, rheumatoid arthritis, dystonia, severe neuropathy and young onset Parkinson’s disease.

‘I have had GPs who clearly do not know what CFS/ME is’

Mel, 27, from Glasgow, Scotland
Mel: ‘I feel that because I am a young woman my pain level is not believed’

I waited seven years to access treatment for temporomandibular joint disorder (TMJD) despite the fact that I had chronic migraines so regularly I couldn’t work full-time. At one point I was recommended treatment and then was told there was “no point” once I disclosed I also had mental health problems, because the condition would just recur. I have had chronic fatigue syndrome (CFS/ME) for around five years but have never been formally diagnosed as this does not seem to be an option. There are no treatments. I have been referred to a centre for integrative care who offer support in living with the condition but I had to ask for the referral after a recommendation from a friend with the same condition. I feel that because I am a young woman my pain level is not believed and the debilitating impact of these conditions on my life is not recognised. I have had GPs who clearly do not know what CFS/ME is and also do not believe it exists. I had to struggle and argue for several months with my GP to get a Covid vaccine despite the fact I have been shielding since the outbreak of the pandemic due to the increased risk that CFS/ME gives me, because I am terrified of how long Covid would impact me. Mel, 27, Glasgow, Scotland, UK – lives with ME/CFS, irritable bowel syndrome and temporomandibular joint disorder.

‘I hope concern [over] long Covid can bring much more understanding’

I experience pain pretty much the whole time, and struggle with my energy on a daily basis, and have to some degree acclimatised myself to it. Conventional doctors have been unable to help as they have only seen symptoms in isolation. After 30 years or so of a total dismissal of my symptoms, there has been a little more understanding in recent years. But essentially all that they [health professionals] can do is to prescribe a drug to deal with a particular symptom. They have no understanding of the interconnectedness and complexity of what I am having to deal with. Their arsenal of drugs can only create a temporary panacea. I have had to learn to take life at the pace I can manage, not push myself too hard. I have to manage my diet, drink little or no alcohol and rest every two hours or so. I have tailored my work to what my body can manage. I have found practising things like yoga or Tai Chi helpful to manage my general energy, but nothing has significantly ever reduced the constant pain in my upper body and abdomen. The single most difficult aspect of dealing with these conditions/symptoms is not the pain or exhaustion, but the inability of doctors and others to take the time to try and understand what is going on, even just to listen properly. I hope that the concern for the results of long Covid can bring much more understanding, help and compassion for the hundreds of thousands of individuals who have been having to cope with the same symptoms for many, many years, as well as those who are now finding their recovery from Covid is not straightforward. The medical profession needs to see beyond drugs alone, and to connect the resources of various practitioners in order to understand what is really going on for people who suffer conditions brought on by viruses or other causes. We have come a long way from the labels of “yuppy flu”, but there is much further to travel yet. Nick, 59, teacher, Devon, UK – lives with chronic migraine, chronic tension-type headache, fibromyalgia, ME/CFS, irritable bowel syndrome, chronic low back pain, and chronic neck and shoulder pain.

‘I know there are thousands like me’

Kat, 41, Hampshire, UK
Kat: ‘None of us (fellow long-haulers) have any idea how long we will be ill’

I’m 41 and am now disabled since catching Covid in March 2020. I used to work two jobs, go hiking in my spare time, and walk my dogs. Now I’m in a wheelchair. The long Covid diagnosis was easy to get but, as yet, I have received no treatment for it. I have an email from my long Covid clinic to say that they cannot treat me as I’m too ill. The chronic thromboembolic disease was diagnosed in October and I was referred to the Pulmonary Hypertension Service. This was a result of a massive pulmonary embolism, thought to have been caused by Covid. None of us (fellow long-haulers) have any idea how long we will be ill or if we will get better at all. I don’t want to be on disability, I want my life back. I do not suffer from anxiety but I have become depressed since becoming largely housebound. Where is our support? I wasn’t sick, I had a life, a career, and we were due to buy our first house and now we are stuck. I struggle every day with the loss of my former life. I know there are thousands like me, and we need proper treatment and management. And answers. Kat, 41, Hampshire, UK – lives with long Covid and chronic thromboembolic disease.

‘Everything became more pronounced after getting Covid’

It has been a long, hard road – 12 years to be exact – and I am still not sure I am properly diagnosed as I am almost positive I have ME/CFS. I developed Covid in early 2020 before testing was available. Right now I have been told to take vitamins, but last year I was on a steroid and an antiviral and felt much better, but I can’t find a doctor to put me back on those medications right now. Everything became more pronounced after getting Covid and I developed new symptoms – mainly shortness of breath, sore throat, loss of taste and smell, which were ongoing for over 15 months. It can be quite frustrating being passed off to specialists, only treating symptoms they know and not looking at the full picture. Rose, 57, former legal secretary, Florida, US – lives with long Covid, endometriosis, chronic migraine, fibromyalgia, ME/CFS, irritable bowel syndrome and chronic low back pain.

‘The doc told me my knees hurt because my parents were getting divorced’

Gillian, 45
Gillian, 45: ‘I don’t want to live on painkillers (they don’t always work) and they make me stoned (and not in a fun way)’

I was diagnosed with ankylosing spondylitis (AS) aged 19, Crohn’s disease at 28 and osteoporosis at some time in between. It took ages to get diagnosed with AS. My first memory of it was as a kid, about eight years old. Swimming was my thing, but one day I had a horrible pain in my sitting bones, I couldn’t walk and had to be carried. No one knew what was wrong. Throughout childhood, I would get weird pains like this now and again. I got checked for cancer, and the doc told me my knees hurt because my parents were getting divorced. Eventually my GP promised she would figure out what was wrong and I finally got diagnosed with ankylosing spondylitis. A few years later, my sister was diagnosed and we were both seen in Toronto, by the best rheumatologist ever, he really helped us both. The treatment has been a bit hit and miss. Mostly I take non-steroidal anti-inflammatory drugs (NSAIDs) and swim a lot. You have to keep moving. Along with the AS comes Crohn’s, which isn’t fun. The Crohn’s can be painful but I’m told mine’s mild to moderate and I don’t take anything for it at the moment. The tricky thing is pain. I don’t want to live on painkillers (they don’t always work) and they make me stoned (and not in a fun way). I use my brain to earn a living and don’t want to screw that up. Sometimes I need them though and it’s not always easy to get to the GP. I’ve been asked/told if I’m “drug-seeking” and it’s like, yes that is why I have come to see you. I was up half the night recently with rib pain. It hurts to breathe, lie down, sit up, there’s a stabbing sort of ache in my side ribs. Crap sleep. But what are you going to do? Me, I’m going to take some more pills and get on with the day. Gillian, 45, writer, from Canada, lives in Somerset, UK – lives with IBS, chronic low back pain, ankylosing spondylitis and Crohn’s disease.

‘My entire healthcare team is female now, and since then all of my chronic illnesses have been diagnosed’

I first got “sick” in 2013, and was diagnosed with various things but got a concrete diagnosis of endometriosis in 2019, when I had a laparoscopy. (This was also the year I switched to an all-female GP clinic.) In 2019, prior to changing GPs, I saw one, who was a misogynist – I quote: “The problem with letting women do medicine is as soon as they’re finished with their residency they want to go on maternity leave.” I got a diagnosis of joint hyper-mobility syndrome and was sent on my way with advice to try a specialist rehabilitation gym to strengthen my joints. After about a year at this gym, though I had seen some improvement, I still had pain in my ankles and feet. My current GP referred me to another rheumatologist and I had a nuclear bone scan, and I was given my diagnosis of rheumatoid arthritis (RA). So now I’m 22, and on so many pills that if you shook me I’d probably rattle. My knees hurt basically all the time due to my hyper-mobility, but my RA is largely under control, and due to continuous use of a (very expensive) contraceptive pill since I was 14, and the laparoscopy when I was 20, my endometriosis is pretty well managed too. I am now going into women’s healthcare because if I can stop one woman from feeling as unheard and brushed off as I did in those years, it will have been worth it. My entire healthcare team is female now, and since then all of my chronic illnesses have been diagnosed and treatment programs have begun. I can add two and two together and make four. Women are often undermined in their own healthcare, consciously or unconsciously, but I’m now in a better place. Allie, 22, student midwife, Melbourne, Australia – living with endometriosis, temporomandibular joint disorder, vulvodynia, joint hyper-mobility syndrome and rheumatoid arthritis.

‘There is a stigma attached to fibromyalgia and people think it is all in your head’

Kulvinder, 55, retired, Cornwall, UK
Kulvinder, 55: ‘I have stopped trying to explain to people how fibromyalgia has affected my life and my mental state. It’s easier to pretend everything is OK’

I was diagnosed with fibromyalgia in 2019. Before that I had a fantastic job in the NHS as a podiatrist. I was very active and enjoyed long walks and sports like skiing, however when pain in my wrist, feet, neck and back started, I was unable to do my job as a podiatrist. I struggled to accept my diagnosis and the chronic pain, fatigue and brain fog that came with the condition and cried often. I had gone from being independent and self-sufficient to relying on my husband to help me. My mental health was at an all-time low, and I struggle to get out of bed on a daily basis. Eventually, after two years, I was forced to take ill health retirement and live on a very small pension. I moved to Cornwall, which has improved my mental wellbeing but I feel somebody has stolen my life. My previous GP was fantastic and very supportive. When people see me they may think there is nothing wrong, but what they don’t see is when I am in pain and have to lie in a certain position when my neck is hurting or that it takes me three days to get over a walk. I have stopped trying to explain to people how fibromyalgia has affected my life and my mental state. It’s easier to pretend everything is OK. There is a stigma attached to fibromyalgia and people think it is all in your head. Kulvinder, 55, retired, Cornwall, UK – lives with fibromyalgia.

‘It took 20 years to be diagnosed with endometriosis’

I was 31 when I was finally diagnosed with endometriosis – it took 20 years. I was told by one medical professional that the excruciating pain was because I was ashamed to be a woman. I had no prescription painkillers, but once diagnosed I was immediately sent for major surgery. I also have herniated back and neck discs and use physical therapy and exercises to manage it. For my migraines I’m on fluoxetine, which acts as a prophylactic. For my IBS, I’m on a diet that avoids specific enzymes, which helps control it, and with my abdominal adhesions, I avoid dairy products and most vegetables, which helps. I’ve been told by doctors that I have a high pain threshold and tend to underrate the amount of pain I’m experiencing. Cynthia, 69, retired professor, Sweden – lives with endometriosis, chronic migraine, irritable bowel syndrome, temporomandibular joint disorder, chronic low back pain, herniated neck discs and abdominal adhesions.

‘I found a pain clinic at a hospital that really listened’

Nicolas, 43, musician and sound engineer, Brussels, Belgium
Nicolas, 43: ‘I used to be a professional saxophone player and was stopped in my tracks at the rise of a nice career’

I am a 43-year-old man, with almost 16 years of chronic pain, fibromyalgia and associated chronic fatigue, sleep disorder, all diagnosed as part of “central system sensitivity”. I used to be a professional saxophone player and was stopped in my tracks at the rise of a nice career. Around 2003 I started to have lower back pain, neck pain and tensions, but discounted it as a result of too many activities: practising the instrument, playing lots of concerts, while finishing my music college degree and doing a part-time job in a supermarket. Then, in July 2005, one morning I was trying to get out of bed and it felt like a thousand knives were cutting through my spine. I went to see many doctors and physiotherapists during the next 18 months, which was a maddening experience. From “it’s all in your head”, “everybody has pain, you have to get over it”, to “looking at you, you seem to be just fine”. I continued to see doctors, and look for alternative medicine, from the most benign, harmless wellness practitioner to the weirdest crook gurus in a room full of desperate people paying top money to have the flavour-of-the-day treatment pushed on you, with little to no effect. In 2013, I found a pain clinic at a hospital that really listened to my story and they diagnosed me with central sensitivity syndrome, fibromyalgia. It felt like a relief knowing it was not in my head, that the pain was real and that I needed both medical follow-ups and mental health support. Nicolas, 43, musician and sound engineer, Brussels, Belgium – lives with fibromyalgia and chronic low back pain.

What is chronic pain and how does it work? – video explainer
What is chronic pain and how does it work? – video explainer

https://carrylaws.net

Leave a Reply

Your email address will not be published. Required fields are marked *