I've written before about living with EDS and Fibromyalgia, much of my personal fitness and health practices are geared around managing those conditions and keeping me as well as I can be.
When managing a chronic health condition, particularly one that involves fatigue and potential flare ups, pacing, good nutrition, good sleep and generally taking care of yourself is always the first priority. Ideally we want to have as few flares as possible. But sometimes they still happen, and when they do, it's good to have a strategy in place.
And I'm going to be talking in fairly general terms, because while EDS and Fibro are my personal experience, there is so little understanding of the mechanisms behind these conditions, that most strategies are going to be applicable to a number of conditions where crashes of exhaustion and pain are a feature.
A flare is a period where someone with chronic illness suffers increased symptoms for a short while. The symptoms can include fatigue, pain, migraine, reduced cognitive function/brain fog, gastric upset, sensory symptoms or all kinds of things depending upon the individual. They are usually triggered by a stressor such as "overdoing it", travel, climate changes, infection, alcohol/caffeine/food intolerance or stress.
What most of these have in common is a stimulation of the sympathetic nervous system (SNS), the "fight or flight" system. It has been suggested that fibromyalgia might be triggered initially by a period of chronic SNS dominance. The SNS is great for helping us deal with difficulties when they arise, but it needs to have downtime, where the parasympathetic nervous system (PNS), the "rest and digest" system can put things back in order again.
Having your nervous system dominated by the SNS is like being on red alert all the time. It literally exhausts your reserves, physically and mentally, and this is why I advise all my personal training clients to take stress management time to do some PNS promoting activity, every single day.
The first thing you can do to help you with your flares is to prepare. I can usually tell if I am going to have a flare, because I know my triggers. While I tend to avoid them, sometimes I need to have a busy couple of days, so I have to plan to crash afterwards. If I don't crash, then I've got some downtime planned that I would have needed regardless. Sometimes they will come out of the blue, so you need to be generally ready.
Having a plan in place is important because it can be hard to think straight when it happens. You could even pack yourself a little box or drawer somewhere with some of the things you might need, to remind you what you need to do.
OK, so lets start the day as we mean to go on, by promoting some PNS action. The best way to do this is through gentle breathing/pranayama or mindfulness meditation. Perhaps even a yoga nidra practice, which is an excellent way to achieve deep relaxation.
Everything you do on a flare day is going to be PNS promoting, but this is going to give it a big push early on.
It's not just physical activity that upsets fibromyalgia, so don't think you can "rest" while completing some complicated study, or by watching an exciting film. Keep everything low key and basic for your poor strung out brain cells. If you have to be productive, maybe make a list of the sorts of activities you can do which take less engagement, and get the mindless stuff done when you don't have the spoons for more.
Decision making and willpower also take a lot out of you mentally. So make sure you have some go-to healthy meals and snacks easily available - you really don't want to be wandering the aisles of the supermarket like a zombie.
It should go without saying that a flare day is not the time to do intensive exercise, or even anything which is low level draining for an extended period. Leave the laundry for a day or so, it's probably not going to walk anywhere without you.
If you can nap, then nap - though some people who have sleep difficulties find this makes sleeping at night harder. In which case make sure you get an early enough bedtime, and maybe schedule a "faux nap" where you just lie down and listen to calming music for 20 minutes.
Work by the Mayo Clinic suggests that people cope and recover better from flares if they continue some low level activity throughout. What you specifically do is up to you. I quite like a shortish session of restorative yoga, or walking my dog. Neither of these are particularly challenging for my level of fitness, so won't trigger my SNS like cardio or resistance training would. A short stroll or a potter around the garden will get the blood (and nutrients) into your muscles and warm your joints. It will also feel easier to get back into activity as you recover.
Good nutrition is always super important. I think everyone needs to understand how to listen to and respond to their body's cues and requests for fuel.
I have noticed that dehydration is one of my flare triggers. I have also noticed that in the onset of a flare or migraine I crave water/milk and protein.
There's no definitive evidence available to support a particular diet in this case, but being aware that you need to have the nutrients to repair cells, to regulate body function and to maintain steady blood sugar, I would suggest lean protein, vegetables, healthy fats and a moderate amount of starchy carbs. Which oddly enough is much the same as I would generally suggest! So it's just a case of being extra mindful about eating well and not reaching for highly processed comfort foods because you feel rough.
It's also best to avoid common (or your specific) flare triggers, such as caffeine, alcohol, refined sugar, MSG and artificial sweeteners.
Fibro aches are often relieved by a little warmth. A wheat bag is amazing on a sore neck, back, or... well anything really. I also find that wearing fingerless gloves is really helpful when my hands are sore.
Another amazing trick is to sit under a hot shower for 20 minutes and let the water run down your spine. This works for all kinds of chronic pain, give it a go.
What have clothes got to do with flares? Actually you might be surprised. It took me a while to understand that what I'm wearing can really drain me, and this gets so much worse in a flare. Clothes that are too restrictive, or too loose and flappy...no good. Bulky clothes are awkward, rough clothes are uncomfortable. I need something soft, supportive, warm, lightweight and not at all annoying!
I have discovered fleece lined leggings. They are amazing. With a long sleeved jersey t shirt. Now I have go-to outfits for flare days, something decent for the school run, right where I need them. It has saved me a lot of sitting on the bed staring into space because wearing clothes is too hard.
So many people I know who live with chronic illness are also really driven, high achievers. And it's so frustrating when you find yourself unable to do everything you want to do.
Be as kind to yourself as you would to a loved-one who was sick. You need this time to take care of your body while it is in crisis. The world will still be there for you tomorrow.
Are you interested in improving your health by making small, managable lifestyle adjustments? Or perhaps you'd like to start exercising, and need support planning exercise that works for your personal situation? I offer online personal training and programming for people with chronic fatigue and pain, as well as my personalised nutrition and recovery coaching. Check it out!
When managing a chronic health condition, particularly one that involves fatigue and potential flare ups, pacing, good nutrition, good sleep and generally taking care of yourself is always the first priority. Ideally we want to have as few flares as possible. But sometimes they still happen, and when they do, it's good to have a strategy in place.
And I'm going to be talking in fairly general terms, because while EDS and Fibro are my personal experience, there is so little understanding of the mechanisms behind these conditions, that most strategies are going to be applicable to a number of conditions where crashes of exhaustion and pain are a feature.
So what is a flare?
A flare is a period where someone with chronic illness suffers increased symptoms for a short while. The symptoms can include fatigue, pain, migraine, reduced cognitive function/brain fog, gastric upset, sensory symptoms or all kinds of things depending upon the individual. They are usually triggered by a stressor such as "overdoing it", travel, climate changes, infection, alcohol/caffeine/food intolerance or stress.
What most of these have in common is a stimulation of the sympathetic nervous system (SNS), the "fight or flight" system. It has been suggested that fibromyalgia might be triggered initially by a period of chronic SNS dominance. The SNS is great for helping us deal with difficulties when they arise, but it needs to have downtime, where the parasympathetic nervous system (PNS), the "rest and digest" system can put things back in order again.
Having your nervous system dominated by the SNS is like being on red alert all the time. It literally exhausts your reserves, physically and mentally, and this is why I advise all my personal training clients to take stress management time to do some PNS promoting activity, every single day.
Coping with flares
The first thing you can do to help you with your flares is to prepare. I can usually tell if I am going to have a flare, because I know my triggers. While I tend to avoid them, sometimes I need to have a busy couple of days, so I have to plan to crash afterwards. If I don't crash, then I've got some downtime planned that I would have needed regardless. Sometimes they will come out of the blue, so you need to be generally ready.
Having a plan in place is important because it can be hard to think straight when it happens. You could even pack yourself a little box or drawer somewhere with some of the things you might need, to remind you what you need to do.
Resetting your PNS
OK, so lets start the day as we mean to go on, by promoting some PNS action. The best way to do this is through gentle breathing/pranayama or mindfulness meditation. Perhaps even a yoga nidra practice, which is an excellent way to achieve deep relaxation.
Everything you do on a flare day is going to be PNS promoting, but this is going to give it a big push early on.
Resting the mind
It's not just physical activity that upsets fibromyalgia, so don't think you can "rest" while completing some complicated study, or by watching an exciting film. Keep everything low key and basic for your poor strung out brain cells. If you have to be productive, maybe make a list of the sorts of activities you can do which take less engagement, and get the mindless stuff done when you don't have the spoons for more.
Decision making and willpower also take a lot out of you mentally. So make sure you have some go-to healthy meals and snacks easily available - you really don't want to be wandering the aisles of the supermarket like a zombie.
And resting the body
It should go without saying that a flare day is not the time to do intensive exercise, or even anything which is low level draining for an extended period. Leave the laundry for a day or so, it's probably not going to walk anywhere without you.
If you can nap, then nap - though some people who have sleep difficulties find this makes sleeping at night harder. In which case make sure you get an early enough bedtime, and maybe schedule a "faux nap" where you just lie down and listen to calming music for 20 minutes.
But do move
Work by the Mayo Clinic suggests that people cope and recover better from flares if they continue some low level activity throughout. What you specifically do is up to you. I quite like a shortish session of restorative yoga, or walking my dog. Neither of these are particularly challenging for my level of fitness, so won't trigger my SNS like cardio or resistance training would. A short stroll or a potter around the garden will get the blood (and nutrients) into your muscles and warm your joints. It will also feel easier to get back into activity as you recover.
Eating the flare away
Good nutrition is always super important. I think everyone needs to understand how to listen to and respond to their body's cues and requests for fuel.
I have noticed that dehydration is one of my flare triggers. I have also noticed that in the onset of a flare or migraine I crave water/milk and protein.
There's no definitive evidence available to support a particular diet in this case, but being aware that you need to have the nutrients to repair cells, to regulate body function and to maintain steady blood sugar, I would suggest lean protein, vegetables, healthy fats and a moderate amount of starchy carbs. Which oddly enough is much the same as I would generally suggest! So it's just a case of being extra mindful about eating well and not reaching for highly processed comfort foods because you feel rough.
It's also best to avoid common (or your specific) flare triggers, such as caffeine, alcohol, refined sugar, MSG and artificial sweeteners.
Keep warm
Fibro aches are often relieved by a little warmth. A wheat bag is amazing on a sore neck, back, or... well anything really. I also find that wearing fingerless gloves is really helpful when my hands are sore.
Another amazing trick is to sit under a hot shower for 20 minutes and let the water run down your spine. This works for all kinds of chronic pain, give it a go.
Choose your outfit
What have clothes got to do with flares? Actually you might be surprised. It took me a while to understand that what I'm wearing can really drain me, and this gets so much worse in a flare. Clothes that are too restrictive, or too loose and flappy...no good. Bulky clothes are awkward, rough clothes are uncomfortable. I need something soft, supportive, warm, lightweight and not at all annoying!
I have discovered fleece lined leggings. They are amazing. With a long sleeved jersey t shirt. Now I have go-to outfits for flare days, something decent for the school run, right where I need them. It has saved me a lot of sitting on the bed staring into space because wearing clothes is too hard.
Go easy on yourself
So many people I know who live with chronic illness are also really driven, high achievers. And it's so frustrating when you find yourself unable to do everything you want to do.
Be as kind to yourself as you would to a loved-one who was sick. You need this time to take care of your body while it is in crisis. The world will still be there for you tomorrow.
Are you interested in improving your health by making small, managable lifestyle adjustments? Or perhaps you'd like to start exercising, and need support planning exercise that works for your personal situation? I offer online personal training and programming for people with chronic fatigue and pain, as well as my personalised nutrition and recovery coaching. Check it out!
Amazing article, thanks for sharing!!
ReplyDeleteThank you for your feedback, you are very welcome!
DeleteExcellent article glad I clicked on it in facebook :-)
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