For the first few years of my journey with pain I was heavily reliant on a cocktail of pain medications. I hadn’t been taught, or learnt for myself, to understand pain or how to self-manage my pain without an over-reliance on pain-medications. I lived ‘in the land of the fairies’ due to the significant side effects of the medication I was taking, and I remained in pain. I didn’t fully understand the long term consequences of being on such high doses of pain medications, and because I was on a cocktail of medications I found it difficult to work out which one was causing me any side effects. I had little understanding as to how difficult it might be to come off some pain medications, and how dreadful the experience of withdrawal can be. I had been on pain medications for such a long time I had completely lost the concept of what life was like without pain medications.
Thankfully I began to experience extreme sensitivity to opioid medication, to the point where I only had to take a very small amount and I would feel very ill and on occasions at risk of collapsing. It was through this that I started to more actively explore other ways of managing my pain. I was fortunate that around the time my response to medications was at its worst I was being seen by a physiotherapist who helped me understand pain and helped me better self-manage my pain without the need for high levels of pain medications. Following this intervention I set about to come off all my pain medications (that wasn’t an easy process!) and am now mainly medication free. Although I found my pain increased a little during the process of coming off my pain medications, I was surprised to find that the level of pain I experienced relatively quickly returned to that when I was on pain medications, if not below.
If I could turn the clock back then there is no doubt that I would have stopped taking regular pain medications well before the time I did. I had no idea how much harm they were causing me at the time, and how little effect they were probably having. I would certainly now choose to live with the pain I experienced rather than the pain plus the side effects from the pain medications. At least now I am ‘me’ again.
I hope that the resources I have collected together below may help you with your understanding of pain medications, so that you can make informed choices when considering reviewing your pain medications.
My thoughts
Stories from people in pain
After more than a decade and half of trying – unsuccessfully – to deal with her fibromyalgia through opioids, Louise finally decided that one way or another, she was going to have to manage her pain another way …
Sean, from Cornwall, describes how he has found an alternative to opiod medication to help manage his chronic pain.
Evie speaks with Niki, a person who has been living with chronic facial pain due to trigeminal neuralgia since 2002. After her success with meditation, she decided to try coming off her long-term opioid pain medication – fentanyl patches and tablets.
It has been a very difficult struggle and a “rocky path”.
Click on the pictures to learn more about each strand
1. Embrace the 'new you'
2. Understand pain
3. Understand YOUR pain
4. Know your pain triggers
5. Make plans, set goals
6. Pace yourself
7. Track your progress
8. Improve your sleep
9. Manage health conditions
10. Move and exercise
11. Improve your nutrition
12. Support your mental health
13. Relax and be mindful
14. Do things you enjoy
15. Attend to life stressors
16. Access clinician support
17. Ask for, and accept help
18. Help others understand
19. Review medications
20. Make adaptations, use aids
21. Return to work / education
22. Engage and socialise
23. Volunteer / help others
24. Explore resources