Widespread body pain that is accompanied by fatigue, brain fog, and, often, mood problems is no joke to live with. It can take a while to even pluck up the courage to go and see a health professional about it because no sooner than a pain in one area appears, it disappears, only to pop up in another part of the body, and so it goes on…and on… and on….
Fibromyalgia is another name for this kind of pain, given to it because it’s mainly felt in the tissues – the muscle and joints of the body. And many people will go through a countdown of different diagnoses and investigations before finally being given the label – often having had to wait to see a specialist, and then feel gutted because it seems like no-one really knows much about what causes it, how it works, or what to do about it.
The news is not all bad, though. Over the past 15 years or so, researchers have been looking at fibromyalgia (FM) in quite a lot of detail. It seems to be a peculiar disorder because to most of the standard tests including blood tests, X-rays, and even nerve conduction tests, everything is working normally. It’s only now that researchers can peer inside the living brain using functional MRI, which shows patterns of blood flow around the active regions of the brain, that we can begin to understand what’s going on. Unravelling that information is taking a while, and we’re only beginning to learn about the changes that are present in the way information is interpreted by the sensory systems in people who have this weird disorder.
Let me see if I can break it down a bit.
In people with FM, what seems to have happened, is the normal careful balance between information heading to and from the brain (and consciousness) is disturbed. This disturbance can include (1) changes in the peripheral nerves and how they function, (2) changes at the dorsal horn, which is where information from the body links with nerves conducting information both up to the brain and across to the other parts along the spinal cord, and to nerves that reduce or regulate the amount of information flow, and (3) changes within various structures of the brain itself that alter how much we experience and indeed, how we experience the information that is within our bodies and outside of our bodies.
One of the mechanisms involved seems to be how well sensory information is integrated and distinguished from other information in the brain. What may occur is that normal information about movement, smell, sound and sight is not as easily sifted through, while information that may reflect the body being under threat is prioritised. What this means is that you might be about to enjoy a lovely juicy apple, but your brain focuses a little less on the many different elements in the flavour and sound of the crunch and colour of the apple skin, and instead focuses a little more on how much it hurts to crunch through the skin and graze your gum, or have that sharp tang hit your tastebuds and make your tongue feel sore because of the acidity of the juice.
One way we deal with unpleasantness is to avoid it. So it’s easy to see that with FM it might feel relatively good to avoid things that hurt, particularly movement. Doing this means, however, that less information about what it feels like to move normally is available for your brain, and there’s relatively more information about what it feels like to be stiff, still, or cramped reaching your brain.
What to do about this?
There’s no simple answer, but what does seem to help is moving. Oddly, it seems that if you pay attention to what is actually happening right now, rather than remembering the last time you did something and it hurt, or predicting that tomorrow you’re going to be really sore, helps your brain sort through some of the unhelpful information about what your body is doing, and prioritises useful information about what is happening right now.
Now it’s important not to overdo the movements at first: your nervous is highly tuned into prioritising threat, and this means you’re probably going to hurt when you do something out of the ordinary. Fact of life for people with FM. What you CAN do is use your amazing brain to:
- Decide what you want to do, and choose something you enjoy – this helps you remain motivated to keep doing it! It’s got to have some sort of reward for you, either the satisfaction of completing something, or the joy of doing something that you personally value. Don’t decide to do something just to keep someone else happy. It won’t work. Personally, I like to dance or garden.
- Begin at the level you’re at, don’t pretend you can do more than you can right now. That’s right, if you are used to doing not very much, your brain is going to ROAR at you if you overdo it, so if you’ve been walking around the house, and that’s your limit, and you want to go walking begin by walking to the corner and back. No more. But equally, no less no matter what your pain is doing. Because your pain is going to do something!
- Be consistent for at least a week or more. Your nervous system doesn’t like change so persisting so that moving becomes normal is the trick. It will protest, and that’s exactly why you’ve chosen something you WANT to do! So you can dig in deep while you deal with the grumpy nervous system.
- Progress slowly by increasing a little at a time. Now I can’t give you a formula for how much to increase by, because it depends on the thing you’re doing, your system, other things going on in your life, and so on. Whatever you do, just increase a little – then STAY at that level for another week or two. Don’t give up now, because this is just the beginning of a good thing!
- While you’re doing whatever exercising thing you enjoy, be mindful of what it feels like to move. Notice the sensation of fabric over your skin as you move. Notice your posture changing. Notice your warmth. Feel the air enter your lungs and then leave again. See the sights, smell the air, hear the sounds. Really pay attention to the sensations that ARE during this time – and gently bring your focus back on your breath, or your movements every time you find your mind wandering away.
Keep on increasing until you’ve reached the level you want to, or your doing what you want to do. Do it regularly. I like to take exercise snacks throughout the day – five minutes here, five minutes there, in between hammering on the keyboard or reading or whatever. In this way you’ll fool your nervous system into thinking nothing special is happening, and yet – something special is definitely happening, as you’ll find out after a couple of months. Not only will you being achieving whatever it was you wanted to, you’ll also be noticing your pain is probably less of a problem, and you’re sleeping better, and don’t feel quite as foggy or fatigued. That’s the magic of giving your body normal movement. Enjoy!