Chronic Pain Treatment Guidelines by NICE – A Patient’s Perspective

I’ve written about the National Institute of Health and Care Excellence (NICE) guidelines on the treatment of chronic pain before and I will probably write about them again at some point. These guidelines concern everyone who is affected by chronic pain because, in my opinion, they will have a detrimental effect on people’s lives.

Please click here to sign the petition about the guidelines

The Chronic Pain Treatment Guidelines Don’t Include Medication

If you haven’t heard about the new guidelines, I’ll try to explain briefly:

The latest guidelines from NICE say that chronic pain should not be treated with opioids. In fact, they say it shouldn’t be treated with any type of pain medication, not even paracetamol or an anti-inflammatory like ibuprofen or naproxen.

Instead, they recommend the following:

• Antidepressants
• Exercise
• Acupuncture
• Psychological therapies (such as cognitive behaviour therapy and meditation)

I wrote in more detail about the new guidelines last year.
Click here to read the post

I don’t disagree with the treatments they are recommending because doctors need to offer as many tools as possible in order to support people living in pain. Psychotherapy may help. Exercise might help too. But it seems cruel and unethical to withdraw all forms of pain medication.

Media Articles About the NICE Guidelines for the Treatment of Chronic Pain

There have been a few media articles recently about the guidelines which haven’t really given a true picture of how they will affect people who are living with pain.

Media articles often have interviews with a handful of patients who’ve miraculously cured their pain by stopping medication and taking up exercise and using things like meditation and CBT.

Sounds amazing, doesn’t it? Stop taking the medication and take some exercise instead. Throw in some CBT and you’re cured. Apart from giving the impression that they couldn’t have been living with much, if any, pain in the first place, they make it seem so simple…but it’s not.

There’s nothing simple about living with chronic pain.

Opiate Hermits

Most articles have interviews with experts who believe that pain medication should only be prescribed for acute pain. So if you break your leg, they are happy to prescribe pain medication but if you have arthritis, fibromyalgia, back pain or numerous other types of chronic pain they don’t want to prescribe medication to help.

In a BBC article, a Dr Hainsworth said that he wants to see a different approach to dealing with chronic pain, “to help prevent the rise in opiate hermits, people unable to work or exercise.”

I felt insulted and angry when I read that. Is he insinuating that chronic pain patients who need pain medication are drug addicts? Does he think that we all take opiates through choice? Do we take them until we get to the stage that we can do nothing for ourselves and simply lie in bed all day, popping pills?

I Am Not an Opiate Hermit

I’m 56 and I’ve had to live and cope with pain for the last four decades so I’m not new to chronic pain. And I can assure everyone that I have not turned into an opiate hermit.

At some times in my life, I have felt like a hermit. I did have to retire from work. And I will be honest and say that, although I try to keep active when I can, I don’t do any structured exercise. But none of that is because of the medication I take. It’s because of my pain. If pain medication had worked sufficiently, I would have continued to work. It didn’t though and I had to retire when I was 28.

The majority of chronic pain patients are not, as Dr Hainsworth puts it, opiate hermits. They’re like me. They do their best. They use coping strategies like mindfulness, CBT and relaxation techniques. And most try to exercise if they can. But most also need pain medication of some kind.

When pain is at it’s worst, it’s impossible to think about exercising through it. It’s almost impossible to breathe during those episodes. With pain medication, coping strategies are possible, exercising might be possible and, for some people, working might also be possible.

Chronic Pain Treatment Guidelines – From My Own Perspective

I developed scoliosis when I was ten years old and by my mid teens, it caused back pain. The back pain became disabling in my twenties but I also suffered from chronic migraines, facial pain and other sporadic pain in various parts of my body.

As time went on, my pain became more disabling and more widespread. My facial pain (eventually diagnosed as trigeminal neuralgia) became, and still is, constant. I have constant back and rib pain due to my scoliosis. Sporadic joint pain became more frequent and more severe. I have pain from my head to my feet most days.

My pain is contant but some days it’s worse than other days. Most of the time, I try to keep mobile, but some days, I can barely move.

My Medication

Over the years, I have been prescribed several types of medication to treat my pain. At the moment, I’m on a combination of anticonvulsants, anti-inflammatories, antidepressants daily along with pain medication (tramadol) when needed. If my doctors followed the NICE guidelines, I probably wouldn’t be prescribed most of the medication that I currently take. I do not know how I would cope.

How My Pain Affects Me

I normally struggle to get out of bed in the mornings, despite taking medication. My back takes a couple hours to feel as though it can keep me upright. It often feels as though it could split in half, especially first thing in the morning. My ribs are always painful. Due to my scoliosis, my rib cage doesn’t sit in the correct position. At one side, my bottom rib is almost touching the top of my pelvis. My feet and ankles feel as though they are full of broken bones when I walk. Add to that, the facial pain, headaches, occasional neck pain, sciatica, knee pain, hip pain, shoulder pain and hand pain….

Chronic Pain Isn’t Just Physical

Chronic pain isn’t just physical. It takes over your life. It’s overpowering at times, exasperating and frustrating. And it is extremely controlling. It can control every movement, every step, every action, even every thought.

I have learned to cope by using CBT, mindfulness, breathing exercises, relaxation techniques and distractions. I use heat pads, a TENS machine and anything that offers any type of help. None of those are magic cures. But they are tools I use alongside my medication to try to make my life more bearable.

I Am Not Looking For Sympathy

I’m not writing this looking for sympathy. I am trying to explain that this is what my life is like while taking medication. What would it be like if doctors stopped prescribing my medication? I cannot even contemplate that.

Sign the Petition About the Pain Treatment Guidelines.

NICE created these new guidelines and so many doctors are in agreement with them. But what about the patients? What about the people who are living with chronic pain – is anyone listening to us?

I’ve written about Claire Swain’s petition in previous posts. With enough signatures, the NICE guidelines will have to be discussed in parliament. If you are in the UK, please, sign it and share it. Ask your family and friends to share it too. We need people to listen to us.

Please click here to sign the petition

Chronic pain patients aren’t looking for drugs to get high. We’re not drug addicts. We’re not turning into, as Dr Hainsworth put it, opiate hermits who don’t want to work or exercise. We just want to live with less pain. With less pain, we can do more.