Louise has lived with persistent pain almost all of her life.
My name is Louise Trewern, I am 53 years old, have four grown-up children and am married to a wonderful woman called Karen, who for many years was my full-time carer.
I have fibromyalgia and arthritis in my knees and feet.
Pain was my constant unwelcome companion, as I entered 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. I was given opioid medication, which initially was marvellous. Suddenly, I was able to continue looking after my family and work 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. Things like skin infections, noise sensitivity, gut problems, more frequent colds, which would completely knock me off my feet. I believed my fibromyalgia was worsening.
I did not recognise or believe that the ‘symptoms’ were actually side effects caused by opioids.
Many of the side effects were treated 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 due to the awful fatigue, coupled with debilitating pain.
Over the next 18 years I declined into a spiral of pain and depression that saw me taking a cocktail of antidepressants and painkillers including drugs like Amitriptyline, Gabapentin and Oxycontin. My 30s and 40s were just a complete blur. And at the time, I didn’t care. I just wanted a magic pill to make me feel like I did the very first time I’d taken opioids. I just hadn’t found the right one or right combination yet.
In the meantime, my hospital file got thicker and thicker with all the specialties 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.
I would hardly leave the house and hated taking telephone calls even from my family.
I could not tolerate any noise, and it 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 was 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, which I now realise was never going to happen because I was inactive, not sleeping, and on a cocktail of medications.
Taking the maximum dose of opioids, I was referred to the Pain Service where I met a wonderful clinical nurse specialist.
She talked 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.
I took my wife to all of my appointments because my brain fog was so bad. It meant I had the support I needed at home. There is no way I could have started the journey to be opioid free without her help.
During this time, I was admitted twice to hospital for opioid-induced impaction (extreme constipation) and surgical intervention – a common occurrence for 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.
It’s taken me five years to get to where I am now. The pain specialists were brilliant and have supported me to get opioid free, and understand I can live with some pain in my life. I was looking for the magic pill that does not exist.
By accepting that the painkillers were doing more harm than good, that they were actually at the root of many of my problems, I am now in a much better place.
I’ve lost 8 ½ stone. I walk most days. Everything starts to hurt more when I stay still, so the solution is to be more active. I’m a better mum because I’m present. I’m much more social, I love listening to music and when my restless legs kick in, well, I turn up the music and have a dance instead of turning to pills that stopped working a long time ago.
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