Flare-up and setback management

Introduction

This leaflet is for those living with chronic pain to help manage flare-ups when they occur.

What are flare-ups and setbacks?

Most people living with chronic (continuous) pain have good and bad days. However, from time to time their pain will become much, much worse. We call these episodes of worse pain flare-ups.

Flare-ups are part of having a chronic pain condition, and can happen even when you are using all your pain management tools. Often people find coping with flare-ups difficult since it can have an impact on what you are able to do, as well as on your thoughts and feelings.

Setbacks, on the other hand, are extended periods of worse pain, often caused by events outside your control, for example after an illness or surgery, or significant life event, like house-move or bereavement.

Learning how to deal with flare-ups and setbacks is an important part of pain management.

Flare-ups:

• Fairly common
• Usually lasts 2-7 days
• Often due to over activity or unusual activity but can be for no apparent reason

Setbacks:

• Less common
• Lasts several weeks to months
• Often due to events outside your control

Flare-ups or setbacks can sometimes be caused by triggers. These triggers can be physical or emotional. Triggers may include:

• overdoing your activities
• being ill or run down
• feeling down
• family illness/crisis
• going on holiday
• money or relationship worries

Sometimes people are able to identify some warning signs before a trigger like more muscle tension; back or joints feeling stiffer or having a headache.

When you have been using your pain management tools, flare-ups will usually become less frequent, have less of an impact on you and settle more quickly.

The impact of flare-ups

Physically, flare-ups might mean you are less active, and you may even have to rest for a couple of days.

When pain is worse, people often find that they are more upset. This can make it difficult to plan or problem solve. Having a written plan to refer to can help you to stay focused and return to your normal activities as soon as possible.

When pain is bad or increases, people often have negative and unhelpful thoughts. These thoughts can be about how the pain has affected your life, concerns about the future and the pain getting worse, or your medical care. Examples of negative thoughts can include:

• ‘this is never going to get any better’
• ‘I cannot stand this pain any longer’
• ‘why can’t doctors do something for me?’
• ‘what’s the point?’
• ‘life isn’t worth living like this’.

Feeling low, frustrated and overwhelmed or desperate are all common and normal reactions to a flare-up. If this is something you experience, it would be helpful to include this in your flare-up plan.

Guidelines for managing a flare-up

Practical

• Wearing loose clothing that is easy to get on and off
• Get a ‘flare-up meal’ out of the freezer (or ask your family to get it out)
• Try and set a small goal for the day, even if it is just to get dressed and brush your teeth
• Use pacing strategies
• Remember to drink enough water
• ‘Phone a friend’ – reach out to your partner/family/friend for support and help
• Watch a favourite programme or listen to some relaxing music.

Physical

• Adapt your day, and rest as much as you need; shorter but more frequent rests may be better than trying to push through.
• It is okay to rest but spending more than 48 hours in bed is not advisable.
• Keep swapping between comfortable positions, but set a timer to try and move regularly, to stop yourself from getting too stiff.
• Try using heat/ice and/or a TENS unit
• Some people find that they are able to temporarily increase their medication but first discuss this with your GP
• Some people find using topical gels and creams helpful. Discuss this possibility with your pharmacist
• Use your relaxation and/or breathing techniques to help reduce muscle tension and soothe the ‘threat’ system
• Try and do your basic (familiar) stretches, very slow movements combined with relaxed breathing

Emotional

• Recognise the increase in pain, and that you are having a flare-up, and that it is not harmful
• Use your grounding techniques to help with racing thoughts
• Try and do some soothing activities, e.g. something for the different senses (some nice smelling bath oils, or lavender spray on your pillow)

Developing your own coping plan

1. Write a list. Think of things that have helped in the past. Think of things that you have learnt on the programme. Focus on the things that you can do rather than the things that you cannot do.
2. Be as specific as possible when adding to your list.
3. Include things you enjoy doing; think about using all 5 senses.
4. Place the list somewhere where it can be easily found or referred to.
5. Put all the things you need to follow your plan together and somewhere they can be easily found such as a flare up box containing your heat pad, TENS machine and a magazine.
6. Reflect: What were the triggers. Can you identify them? Can you prevent them in the future? If they were physical can pacing help? If related to tension/stress does relaxation or stretching have a role? If you can’t identify a trigger, keeping an activity/inactivity diary can throw a light on the situation. However, remember that sometimes there are no triggers.
7. Reflect: Were there any warning signs that indicated a flare-up was possible? If so, can you identify and act on these sooner in the future?
8. Discuss your flare-up or setback management plan with your family or ‘flare-up buddy’ and help them understand what they can do to help.
9. For a setback resting may also feature but limit it to a maximum of 2 days.

Recovering from flare-ups

As you begin to recover from a flare-up, remember to restart your usual activities and exercises gradually. It may also be helpful to reflect back to identify whether there were any triggers/causes for the flare-up, and whether you could do anything differently in the future. It is helpful to learn from the experience, so remember not to beat yourself up!

Also, this would be a useful time to reflect on whether there was anything that you found helpful during this flare-up, and add/amend your flare-up plan accordingly.

When to seek help

Recognising all the usual symptoms associated with your flare-ups such as pain, numbness, tingling, headaches, weakness, temperature dysregulation, noise sensitivity will help you to know when something is completely new. Writing down how long you have had your new pain, HOW it is different from your usual symptoms, and whether it was associated with any injuries, will help you when you speak to your healthcare professional. If you have new symptoms, you could speak to your GP or the ‘First Contact Practitioner’ (a specially trained physiotherapist working in a GP practice) about it. Take some time to reflect on, and write your usual symptoms:

I know I am having a flare-up because…..

Take home messages

• Don’t panic. Flare-ups are a normal part of the chronic pain experience; it does not mean you have failed at your pain management.
• Having a written plan to refer to will help you manage a flare-up or setback as best as you can, and will help you return to normal activities as soon as possible.
• Negative thoughts during flare-ups are common and normal. Use the tools you have learnt on the programme to identify and address these.