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Managing your persistent pain

The Leeds community pain service can help you manage your persistent pain.

Helping you manage your pain

Education about pain and pain management are key, as well as looking at how the pain impacts your life.

Pain can affect every part of your life, for example, if the pain has stopped you moving about, this leads to weak, tired and aching muscles, which will then contribute to your pain and make you less active.

Pain cycle

Things that may contribute to a more sensitive nervous system:

Persistent pain
Being less active
Loss of fitness, weak muscles and joints
Inactivity
Sleep problems
Mood changes(anger, fear, and frustration)
Relationship difficulties
Time off work and money worries
Anxiety and stress

Information on pain and pain management

More about pain

Persistent pain is complicated and we don’t fully understand why some people develop persistent long term pain and others do not.

Persistent pain is often due to a combination of factors, these include:

A chronic condition, such as osteoarthritis
An initial injury, most injuries heal after three months.
Increased sensitivity of the nervous system. The nervous system becomes so sensitive that it reacts quicker and needs fewer stimuli to generate a painful response. Pain often extends beyond the initial injury or site of pain because joining nerves also become stimulated and don’t turn off. Normal movement can become painful
Pain often causes a change in activity level and how we move, this often leads to stiffer and more painful joints and muscles, which can contribute to pain.
Pain can causes low mood, anxiety, anger, stress, weight gain, lack of sleep, all of these factors then increase pain, increase the sensitivity of the nervous system and affect our ability to cope with the pain.

Persistent pain management involves looking at all of the factors that contribute to your pain. We often think persistent pain is a sign of harm and that more pain equals more damage.

This isn’t always true. If you look again at points above, we can identify why this might be the case.

If an injury was the sole indicator of pain, how would you explain the following scenarios:

The person with phantom limb pain, experiencing severe pain in the foot following amputation of the whole leg.
The shark attack victim that doesn’t experience any pain.
The person with hypo allodynia where slight touch triggers pain.

The brain decides the level of pain, this doesn’t mean the pain is all in your head or that you are making the pain up. It means that it is more complicated and that we cannot manage pain without looking at all of the things in the pain cycle.

Increased sensitivity of the nervous system is often compared to a faulty car alarm, which is so sensitive it goes off without anyone touching the car.

Acceptance and change management

Constantly trying to fight or ‘push through’ the pain and delaying things until the pain subsides leads to reduced activity and increased frustration.

Find out more by accessing the pain toolkit or looking at this guidance from the Institute for Chronic Pain.

Taking more control often involves changing behaviour and attitudes. Trying to identify what needs to be changed and where to start can be difficult. The Leeds community pain service can support you, and this may involve the steps below:

Deciding what you want to change, you will choose what you need to change with our support and guidance
Identifying the benefits and barriers to change
Planning how you will make the change.
Maintaining the change

Atomic Habits by James Clear

Lifestyle factors

Lifestyle factors can affect your physical and mental health, which can increase your pain, for example if you are isolated, this may make you feel sad, lonely, depressed and unable to go outside for exercise and to meet people. There are a number of positive small lifestyle changes you can explore to help manage your pain, these need to be added to your pain management plan.

Please see the links below for more information and support:

Healthy eating

Weight management

The NHS Digital Weight Management Programme

Tackling isolation

Money worries

Finding local activities and facilities

Linking Leeds

Housing

Information on equipment and adaptations in the home

The William Merritt centre
The disabled living foundation
Leeds Adult social care can be contacted for advice on a range of equipment and adaptation. For assessment telephone: 0113 2224401

Making a management plan

First decide what you want to change, and then follow the example below

What do you want to change	What is your current behaviour (baseline)	What are the barriers to change	Goals
I would like to increase my walking distance.	I can walk for 2 minutes before my pain increases. I tend to potter around the house. I might walk for 2 minutes or longer once a week but this tends to cause a flare up of pain	Pain Fear of making the pain worse Tiredness Weakness of muscles Motivation Fear of falling	Walk for 1.5 minutes, 3 times a week. Start daily stretches to reduce muscle fatigue. Look for tips on change management and how to increase the success of change. Decide to walk with someone to improve your motivation. Discuss your fears about making your pain worse. Look at the importance of pacing and goal setting and increasing activity very slowly Speak to your GP about your tiredness to rule out any underlying conditions such as vitamin D deficiency or anaemia Falls risk assessment An assessment for walking aids

We will support and guide you through the process of developing your SMART goals.

Moving more and getting healthier

People who have pain will often reduce their levels of exercise but we know that inactivity actually leads to increased weakness, tiredness and muscle pain. For most people, getting fitter and moving more can improve the quality of their life.

It is important to know how to get active effectively. Some people can get stuck in a pattern of pushing through the pain, doing too much and then having to rest for too long. This often leads to increased flare ups of pain and an overall reduction in activity levels.

Getting the right balance can be difficult especially if you have a family and work commitments.

We will work with you to identify your usual activity level and how this can be managed.

Useful links for moving more and getting healthier

Mood

Strong emotions like low mood, depression, negative thoughts and anxiety can make the sensation of pain worse. Negative thoughts can lead to:

constantly thinking about your pain
escalating fear of the cause of your pain
reduced ability to cope with your pain
increased sensitivity of the nervous system
a spiral of negative thoughts
feelings of hopelessness
increased pain

Managing mood is an essential part of pain management.

Useful links for managing your mood

Anxiety management

Stress management

Depression and low mood

Panic attacks links

Bereavement

Self harm

Anger

Controlling anger

Pace and goal setting

To be able to make a pain management plan you will need to develop skills in pacing and goal setting.

Pacing involves looking at the activities you find difficult, want to change, want to improve and breaking them down into more manageable chunks or setting limits to reduce the incidence of pain flare ups so that you avoid ‘boom and bust’ (doing too much on good days and then having to rest for too long to recover because over time this pattern leads to reduced activity).

Here’s an example of pacing:

Problem	Current behaviour	Pacing options
Cleaning the whole house in one go causes increased pain	I spend 6 hours every Saturday and Wednesday cleaning the house. I hoover up every day	Clean a room a day Clean the house over 2 to 3 days with several breaks between Consider if the whole house needs cleaning twice a week Can someone else do some of the tasks

Goal setting

You need to set realistic goals to give you the best chance of success. These are known as SMART goals:

Specific: The goal should state what, when, where and how you will change
Measurable: So you can monitor your progress and stay motivated to continue
Achievable: The goal must be realistic and specific to you. If you make the goal too difficult it will make it less likely that you will achieve it and you will be demotivated.
Relevant: The goal must be important for you
Timed: A goal should have a time limit, when you will start and finish the goal

Useful links

Sleep

Problems getting to sleep, staying asleep and waking early in the morning are very common for people living with persistent pain. Not having enough sleep can increase your pain, reduce your ability to cope with your pain, affect your mood and motivation. There are many factors that can contribute to your lack of sleep, it is important to identify all factors that could be relevant to you and put these in your pain management plan.

Factors that can affect sleep

Pain
Medication, some analgesics and antidepressants can affect getting to sleep and deep sleep
No bed time routine
Not enough physical activity
Lack of exposure to natural light and being outside
Worry or anxiety or unable to switch off
Certain medical conditions, sleep apnoea, depression, menopause
Worry about not sleeping
Restless legs
Bereavement
Environment including noise, temperature
Diet
Needing to go to the toilet during the night
Caring for young children or dependents during the night
Age, sleep quality changes with age, people tend to experience more frequent waking
Alcohol, this might help you to get to sleep but can also affect the quality of sleep
Lack of exposure to natural light
Inability to switch off

Useful Links for managing your sleep

Relaxation and mindfulness

The meaning of relaxation and how it is achieved is different for everyone. We know that persistent pain increases muscle tension, stress and anxiety so creating periods of time where pain is reduced can help to:

reduce tension, headaches, neck and shoulder pain
reduce stress, improve concentration and memory
reduce anxiety, anger and frustration
aid sleep
increase calmness and sense of being more in control.

We recommend building daily relaxation into your pain management plan. This might include:

Reading a book
Listening to music
Having a warm bath
Massage
Progressive muscle relaxation
Mindfulness
Breathing exercises
Yoga or Pilates
Getting creative
Exercise

Useful links on mindfulness

Online course from Leeds Mental Wellbeing Service
The pain CD
Leeds MindWell: This includes diaphragmatic breathing and relaxation audio
Information on mindfulness

Treatments

The following treatments don’t cure pain, but they can help some people manage their pain better. Some treatments like acupuncture or massage might only provide short term pain relief (a few hours or days) but they can also help to reduce stress and anxiety. These treatments are not provided by Leeds community pain service but are available privately and through some charities.

Medication can help, but we only expect a 10 to 40% reduction in pain from analgesia (pain relief medication). Some people get no effect because analgesics become less effective when used regularly. Many people cannot tolerate the side effects of analgesia, for example constipation and drowsiness.

Here’s more information on available treatments:

Analgesia

This page contains information about:

Persistent pain and why medication is usually not helpful
Different types of pain medication.
Driving whilst taking pain
Non-drug ways to help you manage

What can you expect from your analgesia

Persistent pain is difficult to treat with most types of pain medication. In clinical trials most medicines for long-term pain only help about one in every four or five people and on average only give 30% reduction in pain. Analgesia tends to become less effective when used regularly over several months and years.

What other people have said about their pain medication

I take a lot of pain killers, but I remain in a lot of pain.
I thought pain killers would significantly reduce my pain, but it doesn’t.
It takes the edge of the pain.
My pain killers are getting less and less effective.

What pain medication are you taking?

How much relief are you getting from your pain medication?

If you feel your pain medication is ineffective or you would like a review, please speak to your Leeds Community Pain Service clinician, who can book you an appointment to discuss this, we will work with you on:

Stopping all ineffective pain medication
Discussing pain medication options
Being realistic about what we can achieve with medication
If you do find an analgesic that works we will make a plan to try to reduce tolerance and keep your pain medication working for as long as possible
Leeds community pain service don’t prescribe analgesia. Your GP remains responsible for any prescriptions, but we can support and advise you and your GP about pain medication, this might involve writing to your GP with any recommendations
We use the same NICE guidelines as your GP, which means we don’t have any additional pain medication to offer that your GP can’t prescribe

Types of medications used in persistent pain

Here is some information about the various types of pain medication that you may be prescribed. Not all pain medication are suitable for everyone; therefore we would recommend that you speak to a medicines management nurse or physiotherapist in the Leeds Community Pain Service or your GP or pharmacist for advice before starting or stopping analgesia.

Paracetamol
Anti inflammatory medication (also referred to a NSAIDs)
Neuropathic and nerve pain medication
Opioids in persistent pain