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.
This was when it was suggested I go into Newton Abbot Community Hospital for rapid step down of my opioids. I had begun to realise that just maybe my life could improve if I came off the medication.
I began to understand there was also a chance my pain might lessen. I did not totally believe this initially, but by now I felt I had nothing to lose. It was explained to me that I would be the first patient locally to go into a community hospital for this.
The day before I went into the hospital my pedometer read 40 steps, which would have been from my bed to my armchair, armchair to toilet and back to bed. This had become the norm. I went into the hospital full of fear and excitement all at the same time.
Fear of how bad my pain would become and excitement about how my life might begin to improve.
The pain Consultant told me he would half my dose of opioids overnight and that the next day my pain would not be worse. I didn’t believe this but was shocked to find it was true.
The withdrawal was extremely difficult despite taking Clonidine to counteract the worst of it, but I noticed the benefits almost immediately. Most noticeably the fact that my pain did not get worse and instead, slightly improved. It continued to improve during the step-down process and beyond.
The Consultant suggested I pace the ward to help cope with withdrawal as this would help fire the endorphins, my body’s natural painkiller; it of course worked. So I put my earphones in while the rest of the ward slept and paced and paced and paced; so much so that when he came to see me the next day my pedometer read over 2000 steps and he had to advise me to slow down a little; I had gone from 40 to 2000 overnight.
I also began to sleep better almost immediately apart from when restless legs kicked in which for me was a nasty part of the withdrawal. My sense of taste and smell went a bit haywire whilst in hospital but gradually started to restore to normal, and I mean normal BEFORE opioids. My food tasted better after a while and I could smell things that previously I couldn’t, and the saddest thing is I didn’t know until I came off the opioids just how badly I had been affected by them.
When I got home from hospital at the end of the week the withdrawal continued but by now I was totally buoyed by the massive improvements I was already seeing, the fog was lifting and I was beginning to ‘feel’ again for the first time in years and that made the awful withdrawal symptoms bearable, it may sound dramatic but I felt like I was on my way back, to me!!
My mood continued to be up and down over the next few weeks, restless legs were the worst thing to deal with because it would always send me on another marathon just as I was dozing off to sleep.
I didn’t have the ward to pace now so I would put in my earphones and dance around the living room which would give me the same effect as pacing; this then progressed to going out to walk with my wheeled walking frame along Teignmouth seafront and anywhere long and flat.
I had daily then weekly contact with my CNS after leaving the hospital by telephone and in-clinic which was extremely important in those early days. I then began to access the Pain Management Seminars and met some amazing pain physiotherapists who taught me more coping strategies like Tai Chi, pacing, goal setting etc.
Karen and I have walked almost every day since I left the hospital and over time, we have both improved our fitness, wellbeing, and mental health. I call walking my pain relief and therapy now, we go out whatever the weather and take snacks and our cameras and I believe mindfulness plays a huge part in our walking.
In May 2019 we were invited to my brother’s wedding in Oswestry which was a Glamping weekend with a walk up a mountain, Gyrn Moelfre, planned for the morning of the wedding!
My brother gave me several opportunities to bow out of doing the walk (he and his friends were a serious walking group) after all I was his witness and I needed to be back for the wedding at 4 pm sharp.
Karen and I were both determined we wanted to do it, the pace was much faster than we were used to but we did it, we had extra support from two wonderful guys that hung back with us and we finished an hour after everyone else with an hour to spare before the wedding and I can’t tell you the enormous sense of achievement we felt and it is something I will never forget.
Two years previously I would never have believed it would ever be possible.
I have gradually been able to discontinue many of the medications I was taking whilst on opioids, I was taking Duloxetine 120 mg a day and it has been really difficult to reduce until I got fantastic advice from a pharmacist and now I’m down to 70mg a day. I feel confident that I will be drug-free within the next 6 months.
Now I am focussing my life around doing anything and everything I can to help other people come out of the opioid fog. I have been working with the CNS and Consultant that helped me, to produce information leaflets and videos for the inpatient and outpatient step down protocol. I have also become an NHS Volunteer for the Pain Service which was a newly created role. I recently became Chairperson of Involve Giving Something Back Committee which is a Patient Consultancy group seeking to improve the experiences and management of people living with chronic pain. Involves vision is to involve patients with experience of the Torbay & South Devon NHS Foundation Trust’s Pain Management Service in developing and delivering the service.
I was appointed as a lay member of the British Pain Society’s Patient Liaison Committee and I am also one of two lay members on the NICE Safe Prescribing Guideline for Opioids, Gabapentinoids & Z Drugs.
My wife and I decided we wanted to set up a walking group for people like I was when I was on the opioids, inactive, in pain and isolated. We have discovered that going out for a daily walk and connecting with nature can totally change your perspective, reduce your stress and most importantly reduce your pain.
We have been walking daily ever since I came out of the hospital three years ago. We trained as walk leaders last year and through Ramblers Walking for Health scheme, we set up a Grade 1 walk in a local country park. Our local pain service refers people to it. Our walking group is specifically for people living with pain, long term health conditions and/or disabilities.
I still live with daily pain; I still have fibromyalgia and arthritis, but I control my pain through walking IT doesn’t control me anymore. I have so far lost 8.5 stone in weight and continue to lose weight.
I would love to think I could return to work eventually although I couldn’t return to be a care assistant. It would be great to work in the field of pain in some way, making sure I give time for my therapy… walking!
Coming off opioid medication has to be the hardest thing I have ever had to do and by far the scariest but it has also been the best thing I have ever done and every day I have lived opioid-free since then has more than been worth going through the withdrawal, I would urge anyone that is concerned that their opioids may not be working for them to seek help from your GP, pain specialist or pharmacist today.
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.