Dear Clinician
Do you remember me? I remember you. I was the person who turned up in terrible pain asking for help. I had experienced a manual handling injury and although I didn’t know it at the time, I had herniated a disc which led to sciatica with neuropathic pain. I have never felt such dreadful pain, not even when giving birth.
When you first met me, fifteen years ago, I was in so much pain I couldn’t walk even a few steps, not even to the toilet, and just didn’t know what to do. It was when I was admitted to hospital for five days that my difficulties with medication started.
When I was first hospitalised doctors decided on the medications, without consulting me, and without warning me about any side effects. The nurse brought them to my bedside and told me to take them, including administering some rectally, but she didn’t explain what they all were. I didn’t really know what I was taking, and why, and I wasn’t given any patient leaflets to read. She did tell me I was being given a laxative, but when I queried why, she abruptly said that if I didn’t want it, I didn’t have to take it. There was no kind and sympathetic explanation as to why a laxative might be needed, just an abruptness that made me think I should just comply.
Societal imbalance of power
Like many people in society, probably most, I was brought up to think that whatever a doctor told me to do, I should do. Without question. I was brought up to think that the doctor always knows best, and to make sure that I did what they said. It seems this societal learnt imbalance of power was still affecting me as I was dutifully doing what you told me to, without much understanding, and without much involvement. This imbalance of power continued during the first few years of my pain journey. I sought your help, my clinicians told me what to do, and I did it. Simple, but as it turned out badly, and maybe even dangerously, ineffective.
Opioids
After leaving hospital you continued to prescribe me a range of powerful opioid medications, without properly informing me about the side effects (apart from constipation) and without properly warning me about the risk of dependence / addiction. Indeed, you told me that I wouldn’t become dependent on / addicted to opioids because I was in pain. But surely it can’t be logical that opioids won’t become addictive just because you are in pain, whatever any research or pharmaceutical companies might say? I can remember being puzzled at the time and asking you about it, but you reassured me that providing I was taking opioids only for pain I would be fine. But I wasn’t fine. I cannot describe to you how dreadfully ill I was coming off daily morphine. I have never experienced anything like it in my life. I was clearly biologically dependent on morphine. I don’t understand why I decided to just believe you. Was it that societal imbalance of power?
You were kind and compassionate when I saw you. You clearly recognised my distress and difficulty and wanted to help. For that I am very grateful. You knew I was finding life difficult, and that I was in incredible pain. However, looking back I don’t understand why you carried on giving me such strong painkillers for such a long time. I don’t understand why you didn’t recognise that the painkillers themselves had become as big a part of my problem as the pain. Maybe more so.
I told you that my mind felt foggy, and my thinking was blurred. I called it ‘living in the land of the fairies’. I told you that I often felt ill. At first, I didn’t realise this was related to the opioids. It took a long time for this to gradually dawn on me. But surely you should have known? Shouldn’t you have warned me that this could happen? Shouldn’t you have recognised what was happening to me? And intervened?
There is no doubt in my mind that I needed opioid medication at the beginning, and maybe at other times too, and I am certainly not saying I should never have been prescribed them. I will always remember the immense relief from pain that Oramorph brought me, albeit just for a short time. But should I really have been prescribed strong opioids for such a long time? For months and months, if not years? Was that really the best thing for me? Could you not have helped me in any other way?
Other medications
The cocktail of pills I was prescribed included the anti-inflammatory drugs diclofenac and naproxen. You warned me about stomach ulcers, but you didn’t tell me there could be other long term effects if I took them repeatedly, or what those might be. I often wonder if I could now be suffering invisible long-term side-effects, which one day will reveal themselves. At the time I felt Naproxen was helpful, but I now regret taking them for years.
I know you were trying hard to relieve the evident pain and distress I was presenting with, and for that I am truly grateful. You supported me to try gabapentin and pregabalin but for me the side effects were huge. Even on a very small dose I couldn’t walk in a straight line, or think straight, or stay awake. I now know that I was fortunate the side effects were so severe they weren’t continued. I now know I had a lucky escape.
I wasn’t so lucky with Amitriptyline. You first gave it to me in hospital, and I continued it for more than six years, albeit with an occasional short break. Looking back, I don’t really know what impact Amitriptyline had on my pain, if any. I was on so much medication I had lost sense of my body and what was causing what. I know at the time I believed Amitriptyline helped, and I know I was desperate to continue with it. It’s on reflection I’m not so sure. When I stopped taking Amitriptyline my pain and nerve activity initially increased, but after a while this subsided and I was in less pain than before.
I told you I thought Amitriptyline might be causing me side effects, including interrupting my sleep, but you said that was unlikely as it usually helps people to sleep. But that wasn’t what it was doing for me. When I eventually stopped taking it my sleep improved, not completely, but significantly. I understand why you thought it was an unlikely side effect, but your reaction made me doubt myself, and made me confused. At the time I didn’t have enough confidence in my own body and its reactions to stand firm, and so I carried on popping the pills. Was that imbalance of power getting in my way again? Or was it simply the desperation of being in pain?
I felt sure Amitriptyline was causing me to experience side effects with my eyes. You told me you had never heard of that before but to tell my optician. She also said she had never heard of that happening before, but I now know other people have experienced the same. I can’t understand why I was constantly being compared to ‘other people’ and my side-effects doubted, rather than being seen for the individual I am. Whereas once I stopped taking Amitriptyline my sleep pattern recovered, I was not so lucky with my eyes. I guess the damage had already been done, after all I effectively stayed on Amitriptyline for over six years. That’s a very long time. I now experience quite severe related problems with my eyes, which I am told will be life-long. I wonder if this could have been prevented. By listening to me, and I mean really listening. And maybe doing some research and coming back to me.
I started amitriptyline when hospitalised in July 2008. I stopped taking the medication in February 2009 and when I look at my journal entries, I realise that I did not resume it until about one year later. I then was on amitriptyline regularly, with one or two pauses of around a month at a time, until I stopped completely in January 2015. Those pauses were probably what made me even more aware that when I was on amitriptyline my sleep pattern and eyesight were different.
I’m now 100% sure I had a problem with my field vision which was related to me taking amitriptyline. I will never forget once I finally stopped taking amitriptyline driving around and realising that my driving was so much safer because I was properly seeing things in the full field of vision. The difference was really noticeable. I can literally remember some occasions when it really struck me that I had got my full field of vision back again, and how much safer I felt driving with it. I can even tell you what roads I was on as the memories are that striking! The reduced field vision had been picked up by my optician around March 2012, but it was not put down to amitriptyline. Indeed, when I raised with my optician the possibility of amitriptyline causing me problems with my eyes, I was told that she hadn’t heard of that before, and she didn’t think it was likely. I had questioned myself for ages if amitriptyline was causing me problems with my eyesight but was convinced by medics it wasn’t. However, it would take a lot now to convince me that in particular the change in field vision was not caused by amitriptyline – the effect was really noticeable. I just didn’t have the confidence to properly listen to my own body and stand firm at the time.
Amitriptyline was the last regular medication I took. You had reassured me it was safe to take long term, but by then I had decided that I was no longer happy about putting pills into my body day after day. You told me that I needed to reduce the dose very slowly, which I carefully did, even slower than you said. You told me that once I stopped Amitriptyline there would be no ongoing effects, that it would be out of my system in a couple of weeks. I fully understood the logic, but my experience was not the same. I know it took me a few months before I fully recovered. Once more I was torn between listening to my own body and listening to you. Once more I was confused.
UK NICE Sciatica guidelines
I have no doubt that you were following the NICE clinical guidelines in place around the time, albeit there were no specific ones for sciatica, just back pain. I acknowledge that they recommended opioids, NSAIDs, tricyclic anti-depressants (Amitriptyline) and Gabapentinoids (Gabapentin/Pregablin), but that doesn’t mean it was right to leave me on them for so long. Even if that was normal for others. It’s now obvious to me that taking any medications long-term is likely a bad idea, but I couldn’t properly see that then. Of course, there will be instances when the need for long-term medications outweighs the risk, but I wasn’t in that situation. Not with chronic pain.
In 2020, twelve years after my injury, NICE revised their sciatica guidelines and as part of it revised their medication advice. Taken my own experiences, which may be different to others, I was pleased to see the following advice (shortened in places and with added emboldening):
- Do not offer gabapentinoids, … for managing sciatica as there is no overall evidence of benefit and there is evidence of harm.
- Do not offer opioids for managing chronic pain
- If a person is already taking opioids … for sciatica, explain the risks of continuing these medicines. See also the section on reviewing medicines in NICE’s guideline on medicines associated with dependence or withdrawal symptoms.
- As part of shared decision making about whether to stop opioids … for sciatica, discuss the problems associated with withdrawal with the person.
- Be aware of the risk of harms and limited evidence of benefit from the use of non-steroidal anti-inflammatory drugs (NSAIDs) in sciatica.
- If prescribing NSAIDs for sciatica:
- …
- use the lowest effective dose for the shortest possible period of time.
These new sciatica medication guidelines are published with advice about pain self-management, exercise and CBT based psychological therapies.
I wish these 2020 NICE sciatica guidelines had been in place when I had my injury in 2008.
But guidelines alone are not the answer, the answer is in true person-centred, evidence-based care. Even with the previous guidelines my care could have been more individualised, and my narrative more closely listened to. I didn’t need to be on the level of medication I was, and for such a long time. Overall, the medications were doing far more harm than good, and I needed you to see that, and I needed you to act. I needed you to empower me to act.
Addressing the societal imbalance of power
I will never understand why it took me so long to address the evident societal imbalance of power between me and you. As a professional I was used to working as an equal member of the team, confident in my own ability, but as a patient I became someone else. Someone vulnerable, desperate for help, and ever willing to do what was suggested.
Addressing the societal imbalance of power was gradual, occurring over a period of four years. I started to question you more and started to provide better and more information about my symptoms to you, often in written form. After two years, or it might have been three, I became super-sensitive to opioid medication, to the point of collapsing after taking only a small amount, or feeling I was about to collapse. I knew then that opioids were making me ill. This change in my situation meant that you and I had to try and find a non-opioid pain medication, which proved to be a tough search. It was perhaps this search that meant we started to work together as a team more and we started to better address the societal imbalance of power. It was me that brought the idea of nefopam, a non-opioid painkiller which I understand is not normally available for prescription at your clinic. We discussed the pros and cons, and you facilitated me trialling it. It wasn’t as strong with the pain as opioids, but I believed it helped, and the side effects were less severe.
Medications are not a long-term solution for pain
I was fortunate that four years into my pain journey I met a physiotherapist who listened when I described the difficulties I was having with medications. He really listened. I now know that my responses to medications are not typical, and some might say extreme, but he never made me feel that I was mistaken, or making things up, or that it was ‘all in my head’. He taught me to really listen to my body and carefully alter the medication dose so that side effects were more tolerable. He helped me understand that medications were not a long-term solution and that I needed to explore different ways to manage my pain.
He empowered me to become an equal partner in my care, which for me proved life changing. He moved me from my societal learnt imbalance of power to a more equal one. He took the time to help me properly understand my condition, especially my sciatic neuropathic pain. He taught me about the complexity of pain, and that who I am and what I do has an impact on my experience of pain, and he supported me to work out different ways to manage my pain. Instead of medications being the only tool in my pain toolbox, he gave me many more. Perhaps the most important tool he gave me was the ability to listen to my own body, and the pain I was experiencing, and adapt my life and environment accordingly.
But why did it take four years to find a clinician that could help me build that toolbox? Rather than just prescribing me the next set of pills or injections or surgery. Why didn’t you help me build that toolbox, much earlier? And if you couldn’t help me, why didn’t you refer me to someone who could? I needed that pain toolbox almost right from the start of my pain journey, not four years into it. Yes, I needed to take medications, for at least some of my journey, but I needed so much more.
Summary
I still live in daily pain, sometimes severe, but my pain has noticeably decreased since stopping regular pain medications, and I no longer ‘live in the land of the fairies’ and feel quite ill. My life has significantly improved. There is no doubt in my mind that after a time the medications I was taking were doing me more harm than good, but I will never know at what point that occurred. I cannot prove that there was a direct link between me stopping pain medications, and my pain improving, but anecdotally I believe the link was there. Stopping all medications, apart from occasional use, was a turning point in my difficult journey with pain, as was learning pain self-management techniques.
I have now been off regular pain medications for just over eight years. There is no doubt in my mind that there were times when I needed them, especially to start with, and I am very grateful for you prescribing them then. I was in excruciating pain and cannot imagine how I could have survived without them. However, with the benefit of hindsight and the knowledge I now have, I question whether keeping me on them for so long was wise.
I sincerely wish that throughout my journey I had been more confident in my own body and symptoms, and I wish I had asked more questions and taken a stronger role in deciding my care. Fundamentally I wish I had been a more equal partner in my care. Right from the start. And I wish you had empowered me to be.
I feel sure there are lessons to be learnt from my experience, and the experience of others. And I’m sure you would use such learning to reflect, and further improve the life of others. But I wonder how you can learn from my experience, and that of others, if you don’t know how we feel? How can you know that I now regret taking so much pain medication for so long? And that the side effects I said I was experiencing, that you doubted, were in fact real. How can you reflect and adapt your practice if I don’t tell you? But what mechanisms are there for me to say?
Tina
@livingwellpain
NB This letter has been written to a combination of my clinicians. It is NOT about any one clinician. It just describes my overall clinical experience, obviously only from my point of view, and from my recollections, which may not be fully accurate due to the passage of time. It has been written for training purposes. It follows on from my letters ‘Dear Clinician’ and ‘Dear Clinician – Thank you’.
