Ways to cope with reducing opioid medication

You have been given this leaflet because your clinician has recommended that you reduce or even stop your current opioid prescription. This leaflet aims to support and provide you with more information about managing a reduction and acknowledges some of the difficulties that you may experience. ‘Opioids’ refer to all medications that contain morphine or codeine derived from the poppy plant or synthetic types of medication that work in a similar way such as, dihydrocodeine, oxycodone or fentanyl. 

 

This leaflet has been written by Dr Katie Herron (Consultant Clinical Psychologist, The Walton Centre) and developed in collaboration with Clinical Psychologists, a Pain Consultant and specialist nsursing staff from across the UK (The Walton Centre NHS Foundation Trust; Blackpool Teaching Hospitals NHS Foundation Trust; Surrey & Borders Partnership NHS Foundation Trust; NHS Fife; Nottinghamshire Healthcare NHS Trust).

The trouble with opioids

When you think about it, opioids don’t make any sense. You were prescribed them to manage your pain which might have helped at first. You then notice needing to take more to get the same effect which doesn’t last as long; known as ‘tolerance’. It is at this point that you may have had difficult discussions with your prescriber and have got to the point where you have been advised to reduce or even stop them.

Opioids can make you feel worse over time and you may experience symptoms such as increased fatigue, nausea and difficulty concentrating or remembering. Opioids can have the opposite effect in that they can actually increase pain; this is known as ‘opioid induced hyperalgesia’. This is where the body becomes less tolerant to pain and you can develop widespread chronic pains.

Health care professionals may also have told you about the long-term side effects that disrupt hormone regulation. This can reduce testosterone levels with an associated loss of libido and water retention with leg swelling. This can also cause changes to skin, hair, and teeth as well as issues with sexual function. Opioids can cause difficulties with breathing and affect your immune system with a higher risk for more frequent infections. Taking opioids can also increase risk of accidents. Unfortunately, some patients have taken too many and caused accidental overdose.

Research now shows that opioids are best used in the short term and there is little evidence that they are useful for long term pain relief. This may well feel concerning if you have been taking opioids for some time. We hope that this leaflet gives you some guidance and methods as to how you may be able to reduce the amount of opioids you take and experience the health benefits as a result.

Getting started

Being advised to reduce opioids can be difficult to process; especially if you have been taking them for a long time. It is understandable that you may feel concerned, distressed and frightened about reducing or even stopping and are not sure how you will cope. Many of our patients report struggling to accept the limits of medication when it comes to treating chronic pain and worry that there is nothing to replace it. They also report worrying that their pain will increase without the medication or that they may suffer from withdrawal symptoms. Many people feel conflicted, as they understand these medications are not good for them and could be increasing their pain, but also feel stuck or scared about reducing them.

 

What are your concerns? Write them here so you can discuss them with those offering you care:

 

It is important to know that these feelings are completely normal given your circumstances and we want to reassure you that you are not alone feeling this way. At this stage, it is essential that you remember the benefits of reducing opioids, as this can help you stay motivated.

 

What do you think could be the benefits of reducing your opioid intake?

If you have not yet had support from a multidisciplinary pain team, you might not have had the chance to explore other ways of managing pain. If you have not been referred already, discuss this with your clinician as this may be useful to consider for the future.

It is our experience that patients report feeling less groggy, more awake, have fewer stomach issues, better bowel habits, no change in their pain and feel healthier from having reduced their opioids. See below a quote from a patient who successfully managed to stop opioids.

“It’s best thing I could have done for my health” – a patient’s reflection on stopping opioids completely.

 

Emotional impact

It is common to notice mood fluctuations, agitation, anxiety and depression when you have chronic pain and are going through opioid reduction. It is also common to experience suicidal thoughts due to how distressed you feel.  

Whilst you are going through this challenging time, you may find it difficult to manage stress. It can help to consider what may make you feel stressed before it happens and see if you can come up with ways to manage it beforehand.

It is really important that you take care of yourself throughout the reduction process. This includes addressing the basics such as sleep, eating and drinking, movement/exercise, connection with others, taking time for yourself and being kind to yourself. If you don’t already, invest in practicing some breathing, relaxation or meditation techniques to help you manage difficult emotions when they arise. There are some useful resources and contact details at the end of this leaflet that may help you.

If you have struggled to manage your mental health throughout your life, you may find it more manageable if you access specialist support before or alongside the reduction. We have provided links to additional leaflets about mental health at the end of this leaflet. Speak to your GP about a referral to your local psychological therapies service. If you are experiencing frequent suicidal thoughts, it is very important that you tell someone you trust right away and also inform a health care professional including your GP, local mental health team or your pain clinic. You can also telephone dedicated services to support you such as NHS 111 or The Samaritans 116 123.

 

Diary

We recommend that you keep a diary to record your experiences as well as recording your progress. It can be helpful to look back at your diary to see if there are patterns in how you felt and in helping you to stay motivated. It can be difficult to notice some of the small improvements on a weekly basis therefore keeping a diary can ensure you capture any improvements. We have provided an example at the end of this leaflet on page 9, however, feel free to create your own. This can also be useful to show the clinicians supporting you with the reduction.

 

Activity/Routine

Managing your routine can help you maintain the reduction plan. In addition to your usual daily activities, it is important that you plan things you enjoy but also to consider how you pace your activities overall. It is common for people with chronic pain to notice an increase in pain following more activity.

This is the time to plan more enjoyable activities than you normally would, as it will be important to boost your mood as much as possible (see section on ‘Reigniting Helpful Brain Chemicals’ below). Starting the day well by having a wash and getting dressed can be motivating in itself. It can be helpful to plan your ‘everyday’ activities for example, house work, outings including food shopping, going for walks, hobbies and social activities to make sure that you achieve a balance. In particular, remember that getting outside is very good for you; even when the weather is bad. This might just be sitting in your garden or on your front step. Try to keep living life at the forefront of your mind rather than your medication.

In addition, trying to look after your body as much as you can during the reduction will help. For example, consider your diet, smoking and reducing alcohol intake. Sleep can be very difficult when you are in pain, but trying to maintain a regular sleep routine, winding down before bed and limiting napping during the day, can all improve sleep.

“Start the day by making your bed, then you can’t get back in it!” – advice from a patient undergoing opioid reduction.

 

 

What do you need to consider for your routine during this period?

 

 

Reigniting helpful brain chemicals

Opioid based medication competes with your brain chemicals that make you feel good, so it’s important to reignite these. We get a release of these chemicals from anything pleasant. Try to find things in your immediate environment that can help such as music, being around others, anything that gets you laughing such as YouTube clips and comedies. Also, did you know that chocolate and chilli also release feel good chemicals?

Exercise is also a great way to improve mood, however, this can be harder to do when you have chronic pain. Movement within a manageable level is still helpful and you may wish to seek further advice on how to increase your exercise by speaking to your GP or local pain management physiotherapist. We have provided further information on this at the end of this leaflet.

 

Flare up plan

Some people can experience more pain as part of their withdrawal, which will pass. So, we encourage you to have a bad day kit or have a plan to get through it. For example, box sets you want to watch, jobs that you can pause, pace/prioritise your usual activities, reduce how long you spend on tasks, take more breaks and be flexible with your plans. The most important thing is to be kind to yourself and give yourself permission to reduce what you do during this time

Practical strategies such as short breathing exercise or spending 5-10 minutes doing a puzzle or game can help relax you and distract you from the pain.

It is common during a flare up for your mind to tell you that this flare up will never pass or that something serious has been missed, as well as your mind going over all the things you can’t do. Try not to hold on to this and remember it will pass. Is there someone you can talk to at this time? We have suggested you make a list of such people below.

 

Motivation and support

It is normal to struggle at times to feel motivated to start or maintain the reduction. Especially when attempting something difficult, it may feel easier to put it off. Unfortunately, motivation does not come first, it comes from doing things to see the benefits of it which then encourages you to continue. You may have had experiences of this in the past when you have set yourself a goal.

Remember there are short and long-term benefits to be gained here. In the short term, you’ll gain a sense of achievement and those long-term benefits for your health and wellbeing will soon follow.

It is worth considering what will help keep you motivated before you start. For example you may wish to re-read your list of benefits of reducing (on page 3), involve someone you trust to help and keep a record of your achievements. Also, regular reviews with a health care provider is essential for keeping motivated as well as checking on your health physically and mentally.

 

“It’s not easy to reduce but, try to see past the difficulties and you will get the benefits for your health” – motivation from a patient who has been through opioid reduction.

 

 

What could help you stay motivated? List your reasons to keep going here:

 

 

Surround yourself with people who tend to support you well – who could you call when you are struggling?

Names:                                              How to contact:

 

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Withdrawal

Due to the body’s ability to adapt to opioids, it reacts to an abrupt stop of opioid in the form of withdrawal symptoms commonly known as “cold turkey”. Your reduction plan will be set out to attempt to minimise this however, some people do notice withdrawal symptoms during even a gradual reduction. This includes sweating, nausea, anxiety, sleep loss, hot and cold flushes, muscle cramps, watery discharge from eyes/nose and loose bowels. These symptoms can make it more difficult to continue with the reduction and it is therefore important that you speak to your GP or pain clinic about managing your withdrawal symptoms. Remember these symptoms will go away!

 

Have your GP and pain clinic details to hand (remember pain clinics do not offer urgent services so might not respond as fast as your GP):

Healthcare Professional:              Contact Details:

 

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Further resources

• Behavioural Intervention for Opioid Reduction Project https://www.ljmu.ac.uk/research/centres-and-institutes/research-centre-in-brain-and-behaviour/current-research-projects/behavioural-intervention-for-opioid-reduction-bior
• Living Well With Pain http://livewellwithpain.co.uk/wp-content/uploads/Reducing-Opioid-Medications.pdf
• ‘Understanding Pain: Brainman stops his opioids’ on YouTube https://www.youtube.com/watch?v=MI1myFQPdCE
• Getting back to exercise https://weareundefeatable.co.uk/getting-started
• Stop, Think & Breathe (App/Website) breathing, mindful meditations, sleep sessions that are as long or short as you need.
• Oak (App/Web) - breathing and meditation (short and longer sessions).
• Mindfulness https://www.freemindfulness.org/download
• Anxiety (NHS Leaflet) https://web.ntw.nhs.uk/selfhelp/leaflets/Anxiety.pdf
• Low Mood (NHS Leaflet) https://web.ntw.nhs.uk/selfhelp/leaflets/Depression%20and%20Low%20Mood.pdf
• Anger (NHS Leaflet) https://web.ntw.nhs.uk/selfhelp/leaflets/Controlling%20Anger.pdf

 

Acknowledgements

We would like to acknowledge the substantial contribution of a team of Clinical Psychologists across the UK who have come together to create this leaflet:

• Dr Susie White (Blackpool Teaching Hospitals NHS Foundation Trust)
• Dr Jane Birrell (Surrey & Borders Partnership NHS Foundation Trust)
• Dr Karra Grant (NHS Fife)
• Dr Natalie Timberlake (Nottinghamshire Healthcare NHS Trust)

 

We would also like to thank the team from The Pain Clinic at The Walton Centre who have provided additional medical overview to the contents of this leaflet.

• Dr Bernhard Frank (Consultant in Pain Medicine)
• Janet Beattie (Advanced Nurse Practitioner)
• Ruth Devonshire (Clinical Nurse Specialist)
• Karen Chorley (Clinical Nurse Specialist)

  

Date	Medication Taken	Pain Level (0 - 10)	Mood (0-10)	Fatigue (0-10)	Activity	Withdrawal Symptoms