flare-up management

Flare-ups and how to handle them


If you live with persistent pain of any kind, you’ll know what a flare-up is. Periods of time when pain is exacerbated and sustained at a higher than average level over at least a few days, often longer. Flare-ups always settle down – but oh my, it can feel like they’re going on forever!

Handling a flare-up is not quite the same as handling everyday pain. Everyday pain, for those of us who manage it independently of healthcare professionals, usually needs a generally steady routine, not too many surprises. A regimen of movement, relaxation, fun, mindfulness, plodding on and managing stress. A little boring, if you will. Most people will add or subtract some medication (if there is some to help) and vary the activity level depending on the demands of the day.

But when a flare-up happens, some people can find themselves side-swiped and confidence can plummet, while the usual everyday coping can feel like it’s not quite cutting it. For some people, it can be a complete surprise to find that on one day everything feels “normal” yet the next can be a flare-up.

What health professionals do during a flare-up is important, because how we respond and our attitude towards flare-ups can build confidence, or knock it even further.

Identify your early warning signs

Even though a flare-up can feel like it’s come from out of the blue, mostly there are early warning signs that perhaps haven’t quite been recognised (or have been ignored because something else is more important than pain intensity). It can be a period of feeling really good (so that the normal coping strategies don’t feel quite as relevant, and are just a bit easier to forget to do). It can be fatigue, or feeling a little overloaded. It can be a rotten night’s sleep, or a really busy day without the normal recovery time.

An early warning sign can be being more achey than normal, a little stiff and less keen to move. For some it can be feeling a little irritable, or a little down.

There may be parts of the body that don’t typically get sore – but during a flare-up, they begin to join in the action. The quality of the pain may be different: burning, deeper, achier.

Noting these “flare-up early warning signs” in a diary can be a great way to develop an alert system to remind us to focus on keeping on with the strategies that we’ve found useful – like a reminder not to suddenly stop what’s working!

Rescue Remedy

No – I don’t mean the drops you can get! Please no!! The rescue remedy I advocate is to develop a set of strategies, a plan, that is written down ahead of when it’s needed. During a flare-up, thinking straight can be difficult, so pre-planning can reduce the effort at the time.

I always begin by developed a “Can Cope” card. This is a business-card sized card with four or five simple steps that can be used immediately and may even abort a flare-up before it begins. The first instruction is always “Breathe out!” followed by using a calming word like “relax” or “I’m fine” or “chill out”. Three to five out breaths can help to interrupt stressful thinking, enough to move on to the next step that I pretty much always include: notice. Noticing in this instance is a few minutes of body scanning to notice just what is happening in the body in the here and now. A body scan allows an opportunity to recognise where any additional tension is held, to notice and stop rushing if that’s part of the problem, to simply be for a moment or two.

I then like to include a few actions like get up and stretch, or go grab a drink of water, something that allows for some whole body movement – maybe a walk around the block. And finally, I end the Can Cope Card with a reminder that these flare-ups do end!

Working out why it happened

It’s tempting to try and find out what went wrong and why a flare-up happened, but it’s not uncommon to be unable to put a finger on it. So many variables are likely to influence! As I mentioned at the start of this blog, it can be a night of rotten sleep, a busy day, maybe a change in routine, feeling overloaded, maybe even having had a period of feeling really good.

If flare-ups don’t trouble the person very much, analysing how and why it happened may be counter-productive. It’s common for us to think firstly about movements or activities that are out of the ordinary, or perhaps more demanding than normal. These are the easiest flare-ups to identify. They can even be predicted, so can be built in to the weekly planning.

Other contributors can be much more difficult to identify – especially those involving emotional factors, stress, or enjoyable activities. For me, sitting for long periods, as in a conference, or travelling to a conference can be a flare-up initiator. Holidays not so much, but it’s not uncommon for me to feel sore in the days before heading away on holiday – all that rushing around, getting things ready!

Often it can be a cumulative series of seemingly irrelevant decisions. A whole cascade of tiny changes to routine that eventually tips the balance over – maybe working late a few nights in a week, combined with not as much time for exercising, and little more stress at work and not doing mindfulness or taking time out. On their own, they don’t seem much – but they erode the reserves needed to deal with pain on a daily basis.

If pain flare-ups like this do bother the person (or you!), it’s worth taking some time to track activities and mood, fatigue, sleep, and habits for a while. Simply tracking can be enough of a reminder to keep the habits going! But analysing what happens to energy, pain, mood can mean better capability for preparing and noticing in advance. That way, while a flare-up can be on the cards, gradually the person can get better at predicting what things set it off, and can make an active choice about whether it’s worth doing.

Health professionals

If we aim to prevent flare-ups, we’re on a hiding to nowhere. While there’s not a lot of research about on flare-ups, what research there is shows that flare-ups are common – 51% of people interviewed by telephone, all of whom had chronic low back pain, reported flare-ups (Suri, Saunders & Von Korff, 2012). It may be a matter of language: flare-ups can be called “breakthrough pain” (although this applies to cancer pain, when pain ‘breaks through’ the opioid dose, and shouldn’t be applied to noncancer pain); flare-ups can be called relapses or exacerbations or fluctuations. Whatever they’re called, there just doesn’t seem to be much in the research literature although qualitative studies do seem to show flare-ups as important.

If flare-ups are common, what are we doing as health professionals, to help people with pain learn to roll with the fluctuations? I think this depends a great deal on our own fears about pain. If we feel uncomfortable about pain, worry that our patients are “doing harm”, or feel concerned that they may get distressed because of pain, we may inadvertently convey this to them. We may try to dig deep into what may be causing the flare-up, we may ask the person to stop doing things, or alter their programme to prevent the flare-ups from “getting worse”. Or we may simply avoid discussing them at all. None of these approaches seem helpful to me.

I think (yep, opinion time!) that we need to convey our confidence that this person has the skills, capability and confidence to manage this themselves. I think it’s useful not to rush in to try to “fix” the problem, or to help the person out too quickly. This doesn’t convey the message that we are confident they can manage! It doesn’t mean ignoring the person, but it does mean we might want to think about asking the person what they can do to get through. And we can let people know how good it is that they’ve come in to see us even though it’s a high pain day. We can remind people of the skills they have and think of asking them which options they’d like to use. This might sound contradictory after I’ve just said not to rush in to “fix”, but to me the difference is that in one we’re supplying the answers and doing to, but in the latter we’re reminding people and giving the choice back to them.

I also think it’s worth avoiding analysing all the possible contributors, at least initially. Why? Because our temptation will probably be to focus on movements or activity changes that “caused” the flare-up, but it’s probable that many tiny decisions, multiple factors are the real issue. And if we focus on physical factors, we’re conveying yet again that pain is a problem of “the physical” – which may not be the case.

I’ve often said that if someone hasn’t had a flare-up while we’ve been working together, then I haven’t done my job. Flare-ups are part of living with persistent pain, and learning to roll with them is a skill I think everyone who lives with persistent pain can develop. Even though I know it’s difficult. But as people with persistent pain know, we are tough!

Suri, P , Saunders, & Von Korff, M., (2012). Prevalence and Characteristics of Flare-ups of Chronic Nonspecific Back Pain in Primary Care: A Telephone Survey. Clinical Journal of Pain, 28(7), 573-580.

Things don’t always go smoothly


You know, making changes in life is never one of those beautiful uprising graphs like this:

progress It’s far more likely to be like this:

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There are days when life looks fantastic, then you hit a flat spot and it all goes pear-shaped.

While overall you’re definitely making progress, it doesn’t always feel like that especially during a set-back. And this is normal and predictable – but we nearly always fail to plan for it, so the set-back can pounce like a Tigger.

The thing is, though, that as clinicians we can forget this when we’re working with people living with pain. We’re so keen to see people make positive changes that we can forget just how hard it can be when change needs to happen right throughout the daily habits and lifestyle of the person. And so when someone begins to slow down in their pace of change, perhaps even fall back a bit, we can be somewhat unhelpful.

If set-backs are a normal part of making progress, why don’t we help people prepare for it? Forewarned is forearmed, or so they say (not sure who “they” is, but “they” are wise).

Preparing for set-backs

What constitutes a set-back? Different things for different people, I think. So for me, a set-back is a time when changes you’ve recently instituted get harder to do. The reasons changes might get harder could be because of a pain flare-up, or having less pain than usual. They could happen when life gets especially busy. Or the weather has turned colder (or hotter). Or because it’s holidays, or family members are unwell, or a new puppy gets added to the family. Set-backs can happen when anything disrupts the routine, and when the high of deciding to make a change begins to ebb.

Although set-backs are common, they don’t have to put people off their stride, but they DO need some planning. And it’s important NOT to use pain intensity as the guide to whether a person has handled a set-back well – remember that pain intensity can and does fluctuate for many, many reasons, and it’s not the pain that we’re as concerned about as the ability to handle it without losing track of making changes. Painful flare-ups can be a trigger for a set-back, but so can times when pain settles! In fact, in my experience it’s those times when things are going well, pain is settled and all seems to be ticking along when BAM! people forget to use the skills they’ve been developing and begin to head back down to the familiar but unhelpful ways of coping.

I think it’s really helpful to list all the various things that can get in the way of carrying on with changes.

Then it’s useful to list some ways to get around those factors – for example, if I know that cold weather is going to make it hard for me to get out of bed to go dancing first thing in the morning, I know I can programme the air conditioning so that the room is warm, I can lay my dance clothes out the night before (or practice in my PJ’s!), I can make sure my bedroom is warm in the morning, and I can set an alarm 5 minutes before my practice time to remind me. I can also have the music all ready to go in my player, and I’ve planned what I’m going to practice – in this way I’ve managed to work around the obstacles I know I will encounter. And I add to this by setting a ridiculously low amount that is my bottom line – five minutes! – and then I reward myself by eyeing myself in the mirror after my practice and saying “You’re a dancer!” And yes, I got this off the wonderful Nadira Jamal, Bellydance teacher extraordinaire.

setback planningWhen people do have a set-back, it’s still not too late to do something positive about it. In fact, I think there are two things to do.

1. Go through the factors leading up to the set-back. Identify all the opportunities where different choices could have been made. It’s the “seemingly innocent decisions” that gradually lead towards slipping up that really erode change.

So it might be that it’s been a really busy week, so I’ve thought that it’s OK to do half my exercises during the week, and because it’s been great to see a good friend, I’ve gone out with her rather than do my relaxation. And when I’ve been with the friend, we’ve gone to the pub and I had a drink or two. I’ve decided to get up and dance for a while. I’ve been enjoying myself and haven’t noticed the time. I have another drink and carry on dancing. My friend and I head home about midnight and I’ve got a busy day ahead tomorrow – ooops! I’m so sore I can’t move!

Does that sound familiar?

Where could I have made different choices? Sometimes it’s about avoiding a negative emotion, or about being in a positive mood and being carried away. Sometimes it’s because I might have been feeling a bit flat and down and so I’ve decided it’s OK not to do something – and ended up having to do things at the last minute. Whatever it is, it’s worthwhile taking some time to work back to the earliest point at which I could have made a different decision, and avoided wandering down the path of least resistance.

2. Use a “Can Cope” plan for dealing with the fallout once it’s happened. This is a short set of actions that are already written down before the inevitable happens, so people don’t have to do the thinking when they’re feeling least like it. I always start with “Stop. Breathe out. Breathe in. Breathe out. Breathe in. Say something nice to yourself”

The subsequent steps are designed to move from immediate and short-term actions to avoid a complete cr@p out – like doing a stretch or two, going to have a drink of water, taking a few minutes out to say something calming, maybe changing the task to something different for a few minutes, going to talk to someone (or phone them), maybe even taking lunch early. Longer term actions might include taking some medication (as a last resort), changing position, having the names of a few people to get support from, doing a relaxation, and so on.

The “Can Cope” plan can be written down on a small card about the size of a business card (they used to be called visiting cards). Then it can be kept in the wallet and pulled out when needed.

The thing with all of these approaches is that they need to be done BEFORE they’re needed. It’s incredibly hard to think straight when life has gone pear-shaped, so do the thinking before it happens. Make every action very specific – if the person is going to phone someone, list their name and phone number on the form. If they’re going to do some stretches, write them down. If it’s a coping statement, write it down!

And therapists, remember to let the person you’re working with come up with their own plans for how they might get around these things. Remember, people have incredible resourcefulness if WE just get out of the way and stop rescuing before it’s needed. I think the best way is to let the person know you have confidence in their ability to get through. Don’t step in to rescue – it doesn’t teach anyone anything, and it shows that really you don’t think the person is capable of managing by themselves. Unless you want to see a person and be their therapist forever, stand back and let it happen – then work with the person to analyse what went wrong and what they could do differently. Every set-back is a chance to learn!

 

Cue cards for coping


One problem people have when learning coping skills is remembering what to do and when to do it.   In the heat of the moment it can be really difficult to recall exactly what the new strategy is!  We also know that pain interferes with recall because of the disruptive effect on attention, and this effect is heightened when people are anxious about their pain.  One good measure for whether attention and thinking processes are disrupted is the Pain Anxiety Symptoms Scale (McCracken & Dhingra, 2002).

There are a few techniques for helping people to remember what to do – including some of my favourites like a sticker on a doorframe, post-it notes on the computer or dashboard of the car, or reminders on a cellphone or computer.  But one way that has been helpful for several reasons is using a cue card. (more…)