I have lived with persistent pain almost all of my life starting with ‘growing pains’ as a child, which sadly, did not leave me as I got older. This series of blogs describes my journey from dependence on opioids to control my pain to an opioid-free life.
My name is Louise Trewern and I am 52 years old. I have 4 grown-up children and am married to a wonderful woman called Karen who for many years was my full-time carer.
I have fibromyalgia which wasn’t diagnosed until my mid-thirties and arthritis in my knees and feet. I was sickly as a child and suffered from repeated chest infections that would have me missing school. Whilst there, I was unable to participate in sports. A the time I was told I had bronchitis, a diagnosis later disputed when as an adult I had chest x-rays which threw doubt on this.
The pain was my constant unwelcome companion as I entered my working life.
It was extremely difficult to cope with, especially as I always felt that my colleagues doubted the legitimacy of my pain experience; this meant I got quite depressed over time. I lived with the myriad of symptoms associated with fibromyalgia, chronic fatigue, widespread pain, various infections, stiffness, poor sleep, depression, irritable bowel etc.
Gradually my pain worsened. I developed a bad back that would “lock-up” overnight and this would mean that I could not get out of bed quickly enough to look after my children.
I was eventually referred to the pain service and given opioid medication which initially was marvellous. Suddenly, I was able to continue looking after my family and working part-time.
Over the following years, the dose of opioids needed increasing to retain efficacy and although I did not realise it, I was beginning to experience the awful side effects of long term opioid use, skin infections, noise sensitivity, gut problems, more frequent colds, which for me would last longer than my friends and family and completely knock me off my feet. I believed the side effects were my fibromyalgia worsening.
Many of the side effects required treating with yet another prescription medication.
I was hospitalised several times with unexplained severe pain, often in my chest, which was quite scary. Eventually, I had to give up work, I was unable to cope at all due to the awful fatigue coupled with debilitating pain.
Gradually my hospital file got thicker and thicker with all the specialities I was visiting for ‘this test and that’ which almost always were returned with inconclusive or negative results. This also had a detrimental effect on my mental health. The anxiety when the doctor says ‘you might have ‘X’ condition we will send you for a test’, then weeks or often months later, receiving the negative results.
I became so bad that I would hardly leave the house and hated taking telephone calls even from my family. I could not tolerate any noise in the house, and it would even hurt when the cat walked across my lap. I was unable to make any plans because I never knew how I would be from one day to the next.
Babysitting my grandchildren became out of the question unless Karen was with me. I didn’t trust myself not to fall asleep and my self-confidence was at zero. I didn’t feel capable of looking after them.
My weight had increased to 25 stone despite my best efforts to lose weight which I now realise was never going to happen because I was not active, I wasn’t sleeping, and I was on a cocktail of medications.
The point came when my opioids needed increasing again.
I was referred to the Pain Service where I met a wonderful CNS. She began to talk to me about the possibility of reducing my opioids and over several appointments taught me some strategies to cope with my flare-ups of pain. During this time, I suffered my first emergency admission to hospital for opioid-induced impaction.
I ended up in theatre for surgical intervention. A few months later I suffered a second and this was the final straw. The theatre staff told me this was a common occurrence for them with people on opioids. This horrified me, especially as I was taking Macrogol sachets twice a day to prevent this.
I decided I wanted to come off the opioids altogether, no matter how hard that would be, and I firmly believed that if I did not, they would kill me.
Louise Trewern is a patient advocate who has devoted much of her spare time to explaining her lived experience being on and coming off high dose opioids. She is also a passionate walker for pain relief.
A film was made of my experience by the team at Live Well With Pain Website. You can access it by clicking here.