Fibromyalgia: My flare-up survival guide

Welcome to my Fibromyalgia/chronic pain blog. I’ve had fibromyalgia for a few years now and it has turned my life upside down in both good and bad ways. I’ve tried all sorts of things to reduce the pain, increase my strength, decrease associated anxiety etc and thought I would share my experiences with other fibro folks. Everything I’ve written is purely based on my own thoughts and experiences – everyone has a different experience with fibromyalgia so what works for me may not work for you but I hope you find something below (and in future blogs) that may help you.

My top 10 tips for surviving fibromyalgia flare-ups…

1. Remember, IT’S NOT YOUR FAULT!
Sorry for shouting,  but this is a biggie, and worthy of number 1 status. We often blame ourselves when we are having a bad ‘flare-up’, it seems to be a personality trait of fibro folks, ‘I shouldn’t have pushed myself so much today’, ‘I should have taken more breaks’, ‘I should have come home earlier’. We didn’t ask to have fibro, you have not intentionally caused yourself pain. Yes, unfortunately our bodies don’t work the same as most people’s do (or the way they used to) and we do need to learn how to manage our bodies (and mind) differently, but that does not mean that it is our fault we are in pain. This one is a tough one for me, I automatically blame myself when the ‘bad pain’ (as opposed to the ‘every day’ pain) strikes, I must have done something to cause it.  Remember, it is NOT ‘normal’ to be in agony when out doing every day things. Something has happened to our bodies that has re-programmed how they should work. Until we can figure out how to get them back on track and functioning healthily, stop blaming yourself for causing it.

Blaming yourself only attracts negative thoughts, which in turn increases pain and anxiety. Choose not to thinking negatively the next time you catch yourself blaming yourself… simply STOP the negative thoughts.. and thank your body instead, thank it for speaking to you and reminding you to slow down, take a break and be kind to yourself. \

2. Learn to BREATHE!
You might be thinking, ‘what’s she taking about, I breathe all the time, it happens automatically’ or ‘I’m in agony how is breathing going to make a difference??’ One of the main things I’ve learned over the years of life with fibro is that effective breathing really is key to managing pain levels. Often us fibro folks have learned to hold our breath and breathe high up in to our chests (panic, shallow breathing). Which is the ‘fight or flight’ type of response, ‘danger is ahead I need to get ready to RUN or stand and fight’. Useful when we are in danger, no so useful in every day life.

Did you know that holding your breath is a way to stop ‘feeling’? We’re in pain, we want the pain to stop, what do we do? Hold our breath of course. If you’re anything like me, you also tighten up all your muscles too (when stressed, anxious, tired, uncomfortable, in pain) – what a great combination, stopping the oxygen/blood flow getting to your muscles (which relaxes them) and tightening them up so they stay stressed. It’s a recipe for pain, but one we can do something about.

If you can make relaxation breathing a part of your every day routine you are less likely to get to that point where the pain is so bad. I’ve found it’s when I stop practising my breathing (or when I hold my breath accidentally – say in stressful, nerve-wracking or even just new situations) that tightness creeps into my body which eventually turns in to pain. There are of course other reasons and factors that bring on our pain – that we can’t control – but we CAN control our breathing. Who knew?!

My suggestion for help with breathing – find some You Tube videos that you like, search for ‘relaxation breathing’ or ‘breathing for pain relief’, save a few to your favourites and every day (or even every other day), lie down on a yoga mat or bed, turn the lights down and take 15-30 mins just for you to chill, follow the video and breathe. It takes a bit of practice, but the more you do it the easier it will become and the more relief you will get from it. My favourite ‘go-to’ video is this one from David Fairweather: https://youtu.be/8lvEv_eOihY

Interesting article by Cort Johnson on the subject: “Are Oxygen Starved Tissues Causing Pain and Fatigue in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?”

3. Don’t push through the pain.
‘No pain no gain’ should be ‘Any pain, no gain’ for us. Pain is your body and mind’s way of talking (screaming) to you, telling you to listen. It’s not happy, it needs you to stop, calm down, take a break. It’s like when you have a dog and you can tell it’s not happy, it’s anxious and is trying to tell you something but you’re not quite sure what – reminds me of old Lassie episodes, ‘what is it Lassie, what you trying to tell us girl?’. It takes time to figure out what it is the dog wants, learning typical behaviours of your dog – does it need food, a walk, attention? If you can stop and learn to listen to your body rather than pushing through the pain, you might start to hear what it is telling you and figure out what it wants.

4. Talk the pain out of your body
Talking really can help to release some of the pain you are feeling. Our pain is complex, it can be emotional just as much as physical (some times more so!), talking to a friend or partner, or even a counsellor when you’re having a flare-up (and to prevent flare-ups) can make a big difference. I have a feeling keeping emotions inside may be another common personality trait with us fibro folk? So then it’s hard for us to do this one, but the amount of times I haven’t realised I’ve been holding on to something that’s been bothering me and my husband has asked me to talk about it (sometimes he has to prize it out of me!) and I’ve felt loads better pain-wise afterwards is astounding. Yes, I may cry or feel more sore at the time of actually talking about whatever’s bothering me, but afterwards it’s like a release of pain. Like something has literally been lifted from my shoulders or escaped from my body. This can be anything from small silly things like someone was rude to me and it annoyed me, to bigger more complex issues.

If you can’t talk to someone, or don’t feel ready to, keep a diary and write it all down. Or why not do both! You may even find, as I have some times, that you can start to ‘sense’ a flare-up coming on and can avoid it escalating in to the downwards spiralling pain by getting out your thoughts.

5. Be kind to yourself (and be selfish)
When you’re having a flare-up, try to really look after yourself (well, this is something you should do ALL the time, but more so during a flare-up), be kind to yourself and be selfish. Don’t agree to helping out others (as much as it’s hard to say no), don’t be afraid to say NO, instead do something nice for yourself… watch your favourite film or TV show, take a warm bath, go get your nails done, go for a pampering session, order takeaway. It doesn’t have to be anything expensive or complicated and nothing too taxing of course.

6. Turn up the HEAT!
Most fibre folk I’ve talked to say heat really helps the pain. We can’t all go live in Spain (oh how my body would LOVE that), so do what you can to stay warm. Particularly through the winter months or when it’s damp outside. Take a bath, warm up a wheat bag in the microwave, put your clothes on the radiator to warm them up – same with a blanket for evening TV watching – drink hot drinks (green tea, hot water with ginger and lemon to avoid drinking too much caffeine), get an electric blank for your bed – or fill up a hot water bottle to warm up your bed with. I find heat really helps. If you can, get yourself to a sauna and/or jacuzzi, your body will love it.

7. Try alternative therapies
I don’t know about you, but pain killers and medication don’t work for me. I am in no way saying not to take your medication, if it helps then great! But for me, it doesn’t, so I sought pain relief in alternative therapies. I’ve tried all sorts (look out for my future blog post talking about everything I’ve tried and what things have helped and how!) and it’s about finding what works for you, finding practitioners you like and feel comfortable with. As well as pain relief, I’ve found seeking out alternatives has taught me a lot about my body and mind and what might be going on – I like to ask questions about what practitioners have found with my body, how it differs from other people (or how it doesn’t). Some ideas to try that I’ve found help me: Chiropractic, myofascial release massage, Reiki, craniosacral therapy, Thai massage (but find someone gentle!), person-centred counselling.

I like to keep a few different alternative therapies in my ‘survival pack’ and have 2 or 3 different practitioners I like for each treatment (so I have options when I need a last minute appointment and they are booked up)

8. Learn to Pace
I don’t mean pace as in walking up and down a corridor. I mean pace as in spreading out tasks, slowly building up exercise, learning when to take breaks, and generally slowing the pace of your life down. Do you find you have days where you can barely get out of bed? You feel guilty for not getting things done that day, right? So when you feel a bit better you end up doing more to make up for it and make yourself sore? It’s a vicious cycle. If you can learn to pace, you can steady out those ups and downs to more of a soft wave rather than a rollercoaster.

Writing this has taken me a good couple of weeks, writing a bit one day then nothing the next, writing a bit more etc. It can be frustrating, but turn it into a positive – giving myself more time to write this has made me think more about the content and will make me feel so much more of an accomplishment when it’s done. Pacing can be applied to everything!
Pace with exercise: You want to get moving again but exercise makes you sore? Take swimming, Start by swimming 1/2 a pool length (slowly), stop and start as you need to, do that for a few weeks – frustrating I know but getting stronger takes time and patience – then up that and do 1 length for a few weeks etc etc. Or same can be done with walking, 5 mins then 10 mins.. Baby steps!
Pace at work. If you sit at a desk all day, you must take breaks and nice around, 10 mins per hour at least. Get up and walk somewhere away from the computer. Again, it can be frustrating when you’re in the middle of something and you will argue you just need to finish something, but it really does make a difference. Part of the problem is that we want to keep going, push through, so it’s learning to let go and stop.

I’d recommend getting a software program installed on your computer like WorkPace. I have this one on my work computer, it forces you to take breaks – everything from your lunch breaks, 10 min breaks and ‘micro pauses’ where you sit back for 30 seconds and don’t touch your mouse or keyboard. You can set the level of breaks based on your pain – I have it set to freeze my computer so I can’t ignore the breaks. It really has helped me learn to pace at work.

9. Learn to let go of the small stuff
Ask yourself, do I really NEED to do that chore/task? I had grand plans to add drawings to this blog and make it into more of a design/poster with info graphics. But this would all make me sore and take a lot of time and effort. So I reasoned with the perfectionist in me and asked myself did I really NEED to do all that? What was the most important part? The information! Yes, it would be nice to make it look all pretty, but that was an extra.

I bet you’re a perfectionist too and like to do everything yourself? Around the house, ask yourself, do you really have to clean the house top to bottom, could it wait? Could you do a little today and a little tomorrow? Do you really need to sit and do all the ironing which will make you sore? My mother-in-law will shreak in horror at this one, but I barely iron anymore. I have a couple of shirts that need to be ironed, other than that I don’t bother. I used to iron everything, and when on holiday would panic when our travel iron wasn’t getting the creases out. Until I was in Australia with no iron for 6 weeks, didn’t iron a thing, no one noticed, no one died. My body heat took out most of the creases. Came home from the holiday and have barely picked up an iron since, 8 years later.

10. Keep moving!
Movement is really important with fibromyalgia. Little and often is best. Find a movement method that works for you. Of course I’m going to say this, I teach 2 different types of movement methods, but this is not a business plug – there is a reason why I started teaching The Gyrokinesis Method and Pilates and it’s all because of fibromyalgia.

I have found most cardio exercise (running, cycling, jumping about type exercise classes) results in pain, but smoother more fluid stretching and strengthening exercise, that work the whole body, along with the breath does not result in pain and can actually feel amazing. Here are my suggestions:
  • Yoga – a gentle type like hatha
  • Gyrokinesis
  • Gyrotonic
  • Swimming – gentle and as long as the pool is warm
  • Pilates – where the focus of the class is about postural alignment and effective movement rather than working core muscles to ‘feel the burn’
  • Tai Chi – helpful in calming down the mind and learning to move mindfully, however be careful of repetitive movements
Look out for my future blog detailing all the movement and exercise types I’ve tried and the results on my fibromyalgia – good and bad.