I am currently having my first experience of painkiller withdrawal and it’s horrendous. It is also an unnecessary consequence of shielding that I didn’t foresee. I am left wondering, what else from the last five months during the pandemic will we, the shielded, be paying for?

A plaster over a bullet wound

I, like many, went into lockdown receiving treatment for poor health and under the care of a number of multi-disciplinary teams. Lockdown hit everyone hard. It was a shock to the system, the first time in generations that people had been ordered by their governments to stay home, been told what to do and to put plans on hold.

Now imagine that happening when you were being treated. Waiting for appointments. Already at the end of a long road trying to get answers, mobile or out of pain. To receive five appointment cancellation letters in March alongside my four-page shielding letter from my rheumatology team, was the lowest point of lockdown for me, personally.

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I’ve talked a lot about the difficulties and pressures of shielding from a mental health perspective in my mini-series but I haven’t talked as much about the physical impact.

Firstly, let me say that I am lucky. I wasn’t waiting for surgery or cancer treatment and such like but I do have a life long chronic condition that needs managing and the pandemic meant this had to be put on hold for five months. Understandably, of course. What wasn’t covered in the little media attention those of us shielding received was just how little we were able to be supported in terms of our chronic condition.

“Keep taking your painkillers”

My personal experience was this. Pain management. Pure and simple. Only with less of the management part.

I genuinely lost count how many times a GP, Dr or nurse told me over the last six months to “keep taking your painkillers”. No treatment of the disease. None of the usual procedures. Just painkillers to get through the days. The oh so many long days from March through to July.

I have had nights where I wasn’t able to sleep, days where I was so irritable and at the end of my rope, I couldn’t talk to anyone. I knew that the first person I engaged with would unfairly be on the receiving end of my anger, bitterness and resentment. Mentally I never broke but I came pretty close.

The ‘chronic pain box’

Anyone who has experienced unrelenting chronic pain will know what I mean when I say there comes a time occasionally when you panic. When the pain has been at such a high level for so long that you want to tap out but you can’t. You feel claustrophobic. You’ve used all your pain relief, tried everything but without any escape. Like you are in a box.

I had days of feeling like this. Within this moment, in particular, I could totally understand why people take extra doses, use alcohol or turn to illegal substances. It takes a lot of will power to get through those days.

In my desperation and many calls to my GP asking for help, waving a white flag, I was trialled on a whole host of things. Many of them completely incompatible with being a parent of an 18mth old. Where I was responsible for his care whilst mum was at work. I was already on crutches by May, just two months after being ‘medically isolated’. I didn’t need to be comatose as well.

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We tried the GP’s seemingly ‘go-to’ amitriptyline and some sedating antihistamines but they knocked me out so much that I wouldn’t have heard Dylan cry in the night. Plus, I was still dozing off at 11am the next morning. It simply wasn’t safe.

Reluctantly, I was also tried on some ‘painkilling antidepressants’ but, and with no exaggeration, I slept for two nights and a day without getting up for food or water. It was a horrendous experience involving all sorts of hallucinations and is a group of medication that I will never, ever touch again.

A break in the clouds

The breakthrough came due to a combination of two things. Firstly, I was sick of doctors targeting my lack of sleep or low mood. The issue was the pain, fix that and the rest will follow!

Solpadol and other variations of codeine painkillers have been the number one go-to in my arsenal since I was a teenager. Whenever the pain got really bad, I could reach for them and within 30mins be horizontal with a smile on my face. However, after my experiences of 2019, these had now stopped working. A year of taking four doses a day religiously meant my body was now used to it.

I hated that feeling of having no backup. No way ‘out of the box’ when things got rough.

Secondly, a recent rheumatology appointment had concluded that the arthritis was now under control. Whatever was causing the pain was something else. Be it damage to nerve endings from inflammation or an issue with my brain still perceiving pain after being subjected to it for so long with the arthritis flare. We also have to consider that it could be a new illness entirely.

Armed with this new information, I was able to demand a new approach from my GP.

I was prescribed Gabapentin, an epilepsy drug that operates on different pain pathways to codeine. This was designed to target the neuropathic pain this was now looking more likely to be. Within a week or so I had a few pain-free hours in my day for the first time in over a year.

Writing this four weeks on, I am now on the verge of returning to work full-time for the first time since February. Whisper it quietly, but we may be on to something!

Welcome to hell

By this point, over the course of lockdown, everything had been increased. From anti Inflammatories, such as meloxicam to painkillers. Plus supplementary meds to deal with the side effects of these increases, such as lansoprazole. The list goes on.

Now that I had some clarity. Now I knew roughly what I was fighting. What was arthritis, what was something else and I had stumbled upon something that appeared to be working, I was keen to get this cocktail thinned out.

The plan with my GP had always been if we could find something that worked then we would try and give the codeine a break so, in time, it could be of use to me again. It turns out, the reduction happened naturally. As I found myself in periods of less pain during the day, I reached for additional painkillers less and less. I was also keen to be more lucid for my work.

Then came the painkiller withdrawal symptoms.

It started as migraines. Like a tension headache but with additional issues. Then cold sweats, irritability and muscle aches. I pointed it out to my wife and she called it instantly.

“It’s withdrawal. When did you last have your painkillers?” she asked, “4-6 hours ago”, I replied. “There you go then, your body is wondering where they are”.

It was the first day I had needed to take codeine for a while so it made sense. I had experienced a similar set of symptoms the week before when I last used it but with my health being so up and down at the moment, I thought nothing of it. To test this, I took some more codeine and within twenty minutes I went from having flu-like symptoms to feeling absolutely fine. “Oh sh!t”, I remember thinking to myself.

Decisions, decisions

At first, I didn’t know what to do with this information. I didn’t want to slide down that slippery slope of taking something to avoid the side effects of withdrawal. I’ve watched enough documentaries about my idols in music to know where that path leads. I also wanted codeine to be of use again and the only way to that scenario is to give my body a break from it.

So, as I write this, I am currently four days into my efforts to try and actively reduce my codeine intake. I am sweating on and off throughout the day, irritable as hell, experiencing blinding headaches, my entire body hurts and to make matters worse, I’ve had a couple of minor hallucinations. Examples being seeing stars in my vision and things in my periphery that are not as I first perceive them.

On top of this, my bones ache like crazy from the lower amounts of painkiller in my system.

I will write an update on my progress with this in time but given it’s taken me three days to get this article finished, it may be towards the end of my journey. A journey that hopefully takes me back to a place when I have a ‘backup’ again to escape my ‘chronic pain box’, where I am more lucid and less reliant on heavy painkillers. Where I can be a more active and engaged parent.

However, to get to that destination, I must first walk through hell.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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