Know your triggers

What is it? It's an approach I use to help me deal with my own pain. What I do is keep an eye out for what triggers my pain and then see if it does so consistently. I use this knowledge to make decisions about whether to avoid the thing or do it anyway and deal with the pain. I tend to cut out things I don't care much about entirely (like skipping or cycling) and restrict the amount I do of things I do care about or find ways to minimise the part that cause me problems (like gardening in shorter bursts and without digging and travelling on public transport to meet up with friends and trying to find more local things to do), so that I only have a limited number of nights I have to take extra meds or can't get enough sleep each month.

Does it work? It won't get rid of your pain, but it might help you reduce and control it. It might also help you better understand why you have pain on one particular day and how you can avoid getting as much pain on others and make conscious decisions about your preferred trade-off between doing things you want to do and minimising your pain. Remember, knowing something is a trigger for your pain doesn't mean you have to cut it out entirely. With knowledge comes power.

Who does it work for? People whose pain is affected by what they do or by the world around them.
 
Who doesn't it work for? People whose pain is completely unaffected by all environmental influences. This is actually unlikely to be anyone, as doctors keep telling me that everyone's pain is affected by the amount of sleep you get and stress.

How do I do it? When I'm in more pain than usual I start with the question: have I done anything differently today or yesterday? Here's a list of factors that I've heard medical professionals mention as pain triggers:

• not getting enough sleep
• stress/emotional distress
• (women only:) the point you're at in your menstrual cycle

Quite often we have no control over these factors (although I'll be writing more about strategies for managing sleep, stress and your menstrual cycle in later posts), but I find even knowing that I'm feeling particularly bad today for one of those reasons helpful, as if there's a reason I've got bad pain today (or have even had it for several of days), it's reassuring to know the trigger is unlikely to last forever and that this isn't necessarily a sign of a permanent deterioration.

Here's a list of things I've found trigger my pain:

• cycling or skipping or exercise that mimics these, but not exercise in general
• walking for more than 20 minutes (but usually only my knee pain and not one of the pains that stop me sleeping)
• consuming milk that isn't lactose-free (gut symptoms)
• digging the garden and topiary, but not planting things, providing I take regular breaks
• sleeping without a pillow under my knees
• having a laptop on my lap (my left thigh strongly objects to the pressure)
• using a mouse
• standing around for more than about 10 minutes 
• sitting or lying in less than optimum positions
• travelling on buses, trains or tubes for more than 20 minutes
• travelling on public transport at all in winter
• driving for more than about 60 minutes
• being a passenger in a car for more than about 3 hours
• cleaning the bath
• painting the walls or skirting

Notice how specific these are. I could just have concluded that exercise sets me off and avoided all exercise and I could have just concluded that dairy in general (or worse, all the usual food suspects including gluten, wheat, nuts and fish) set me off (I do actually also have a problem with nuts and fish, but not with every single one of the usual suspects plus also with some really unexepcted foods).

What actually happened was that I noticed that I was consistently having bad hip and lower back problems after I'd been exercising. I tried cutting out exercising as a whole (actually I went on holiday and didn't bother to exercise) and noticed that I was much better. But instead of permanently cutting out all exercise, I cut out the bits I suspected most (ones that involved my hips and lower back) and kept going with the rest, then noticed how I felt. After that I kept adjusting and kept adding things back in or cutting more things out until my pain felt no different or only minimally different after I'd exercised (I don't count normal pain after exercise here and fortunately I can feel the difference). I also concluded that contrary to government advice, I was better off doing my major exercise in only 2 long sessions per week rather than a smaller number of smaller sessions, so I only get 2 to 4 days of pain after exercise instead of 3 to 7, as I really don't like coping with that most days on top of my usual pain. The trick is to think "how can I do this differently? what are my other options?". Some of them might be worse for you, some of them will hopefully be better. Also, you may be able to work on some of your movement-based or postural triggers with physiotherapy, the Alexander Technique or just by generally strengthening the muscles that are causing the problem with exercises.

Your specific pain triggers will probably be different from mine, and some things that make my pain better might make yours worse (for instance you might be better off exercising in small sessions everyday rather than in 1 or 2 big sessions a week). But knowledge is power. Once you know what is going to put you in pain, you have a choice between avoiding it or choosing to do it anyway. You are under no obligation to minimise your pain. The trick is to live the best life you can with the cards you've been dealt.

Other tips:

• Don't beat yourself up if you can't work out some of your triggers. Some of them are really hard to work out and I sometimes realise mine months later after a lifestyle change has made me realise something I wasn't aware of was triggering pain (cycling was one of those because I'd previously not had a problem with it). I'll probably never work all of them out.
• A pain diary might help, especially to work out if your menstrual cycle is involved. My pain is extremely complex and fluctuates a lot throughout the day. I am, however, usually able to answer the question was today a red day (awful, struggling to cope), an amber day (lots of problems, far from a good day, but definitely not a red day) or a green day (no major problems, felt pretty OK) so I suggest keeping a paper record and rating your pain 1 = green/good day, 2 = amber/middling day, 3 = red/awful day. If you're a visual person you could use colours or  make a bar graph. You can compare this to your menstrual cycle or other things going on in your life.
• Once you have a suspect, change only that about your life and see if you notice a difference. Reintroduce it after a week or two as a double check.
• If your suspect is quite a big thing (e.g. exercise in general or food in general), see if you can narrow it down by reintroducing one thing (or one set of things) at a time. If you find a trigger within a set of things, it's even worth re-introducing one of those things at a time, because the aim is to have as many safe things in your life as possible and as few things it's best to avoid as possible.
• If it is possible, don't replace the thing you are cutting out with something else that isn't normally in your life. For instance, don't replace milk with rice milk or soya milk if you don't normally consume those, as if you continue having a problem you won't know if the thing you excluded (milk) wasn't the problem or if you have a problem both with the thing you excluded (milk) and the thing you replaced it with (rice milk). Just because many people have problems with thing A but not thing B doesn't mean you don't have a problem with both or neither or just thing B.
• Sometimes we can get a placebo effect from our brain's beliefs. This means you might cut something out that is completely neutral for you, but the placebo effect might mean you improve anyway. Actually, if you can benefit from the placebo effect this is great and realistically it probably doesn't matter if your body actually gets pain from cycling or your brain produces a placebo effect from you not cycling. Just try not to get to a situation where you only eat cabbage and water and move your left arm only on Tuesdays with a full moon. Try and be as specific as possible and cut out only the bare minimum, and if you have cut a lot out try reintroducing things occasionally (I regularly reintroduce milk that isn't lactose free whenever I have a cappuccino at a cafe, my guts let me know I still have a problem with it  every time).
• My pain onset is often delayed. If you're like me, everything you did in the 48 hours before the pain started is a suspect. Some things are obvious. For instance, I currently have pain in my thigh under my laptop. This happens consistently. What's less obvious is that my thigh and hip also typically experience more pain later in the day or at night after I've done this, often with a pain-free gap in between. Why, you may be asking, do I currently have a laptop on my knee? Laziness and choices. You don't have to choose to minimise pain every time, but I certainly wouldn't do it all day every day.

How much does it cost? Nowt. It's free.

Is there any evidence for it? I seriously doubt it. It's not something medical professionals I've met have encouraged, although it could just be that my googling skills were lacking. Remember, the fact that I say it works for me is only anecdotal evidence (which is a very poor level of evidence indeed). But also remember that there being no trials doesn't mean it doesn't work, it means there's no evidence either way.

Are there any downsides? It is possible that if you follow this advice that you'll end up paranoid and anxious and that the expectation of pain from an activity will in itself be enough to create the pain without any other stimulus from the activity itself.
I'm not generally an anxious person and I prefer living in a world where I get more predictable pain and make conscious choices about whether things that increase my pain are worth doing anyway and planning for easy days on days I expect an increase in my pain (for instance because of the time of the month). It also means I can manage my meds better. Because opiates stop working for me if I use them regularly for several months, limiting the number of days on which I need them to sleep is really useful for me and means I don't have to worry they're going to stop working.
However, everyone is different, so if you find that looking for triggers seems to be making you more anxious or making things worse, it's a good idea to stop doing it. Also, if you can't stop beating yourself up about not finding every single trigger, consider yourself exempted from carrying on. If this isn't making your life better it's not worth doing.
The other downside, even if this approach is generally successful for you, is that you can end up avoiding a lot of things and it can be very frustrating, and bring home to you the difference between your life and a healthy life.


Are there any other upsides? It's drug-free and has no side effects.

Was it worth the effort? It's not actually much effort for me (apart from the pain diary, which I confess to not ever having successfully kept for longer than a week and a half). I find myself doing it without much thinking about it. On my bad days, my brain quite often finds its way to the question "why?" and I find it much less distressing to answer the question "why today?" than "why me?".
 
What are your triggers? How do you work out what your triggers are? Does this approach work for you or does it make you feel worse?