Jill’s story

Jill, 80 has lived with pain for over 40 years. Diagnosed with Sjogren’s Syndrome in her late 30s, she has managed rheumatoid, arthritic pain for over half her life. When the pain in her back became too much to manage, she was prescribed Codeine Phosphate. It resulted in a range of serious consequences.

“I simply did not realise that Codeine Phosphate is a strong opiate.”

My back had been hurting for a long time – probably caused by degeneration in my spine. My breathing was also affected, so to help me become more active, I was prescribed Codeine Phosphate – up to eight 15mg tablets per day. I simply did not realise that it is a strong opiate.

I took the full amount of the prescribed dose over several months. Over that time, I became increasingly clumsy, tired, detached, had little confidence and felt physically weak, achy, and fearful. The back pain was eased, but not massively. I continued with the codeine because it continued to be prescribed.

I put how I was feeling down to a progression of the Sjogren’s Syndrome, getting older and perhaps even the medicine. I was on 12 different tablets, so it was difficult to know which one was the culprit.

Once I understood that Codeine Phosphate is an opioid that can bring serious side effects, I made the decision to come off it.

“I was increasingly zombie-like.”

It was an overwhelming and scary time.

I’d seen a locum at my GP practice who wasn’t in a position to support my withdrawal. So, I simply stopped taking it, relying purely on paracetamol for pain relief.

It was unwise to come off it so rapidly. It should have been a slower, supervised withdrawal, but I was determined to stay off.

I saw improvements after just three days. The fog in my brain was clearing and I could start to plan.

It was a long road. After four months I felt more like myself, more purposeful. I was still overwhelmed by decision making and found it difficult to mix with groups of people, but it was clear to me and others that I was improving.

I lost a year of my life to this drug.

Today I am more positive and work out my own plan for better health. I use a wide variety of techniques to maintain my physical and mental well-being. One of the simple things I do, is drink a pint of milk to boost my calcium intake. I rest when I need to. I am better at pacing and prioritising my activities and have been supported hugely by my local Pain Management team who phone regularly with advice and positive guidance.

I manage my pain daily only on paracetemol. I am very grateful to all those who have helped me, particularly my wonderful family and recently several kind, skilled and interested health care professionals.

I shudder at the thought of having to take Codeine Phosphate again. I will never use it for long term pain management.

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