Tag: Fibromyalgia

Delayed Onset Post Exertional Malaise

The FibroTroll, as I’ve mentioned before, is a bit of an arsehole. He likes to beat you with his club at short notice and for minimal reason. The other thing he does, is hold a grudge. Like really, really, hold a grudge.

I’ve noticed a theme the last couple of weeks in a few of my Fibromyalgia and other chronic illness support groups that people will comment that they did something on Saturday, didn’t feel too terrible on Sunday and then on Monday feel like they’ve been run over by truck. Or work a few days, then have to sleep the entire weekend.

This happens to me too. The technical term for it is Delayed Onset Post Exertional Malaise. Basically what it means is that you’ve used up all your energy, but your body doesn’t realise it until 24-72 hours later. It is mostly described in relation to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), but it is common with FibroWarriors too.

It’s as if your car could run out of petrol but keep driving for another 10 km, but use up petrol that hasn’t been put in the tank yet. Then when the fuel light finally turns on, the car won’t run, and you have to replace that 10 km worth of fuel before the tank is even empty.

Possibly not the best analogy, but that’s the way I explain it best. (If it helps, pretend that car’s fuel tank is in some Dr Who’s parallel dimension!)

It makes it even more difficult to learn to pace yourself. For most people, (myself included before the FibroTroll came to stay) when you think about pacing, you think that all you need to do is stop when you get tired and rest. This doesn’t work. You have to work out how to stop BEFORE you are tired. Yep, you have to guess when that fuel warning light SHOULD go off, and ideally stop when there’s still fuel in the tank.

The other problem with Delayed Onset Post Exertional Malaise, is that if you do a thing (work, exercise, function, exam – basically anything that is physically, mentally or emotionally more draining than normal) and then might not feel too bad the next day. So you don’t rest as much as you should. Then the next day (or anywhere up to 72 hours post thing), that’s when it hits you. Except that because you didn’t rest the day after, it actually turns out that you went 20 kms into that negative fuel tank.

And this is where the FibroTroll’s grudge holding comes in. He’ll beat you with his pain club, his fatigue club and whatever other club he finds lying around, and often invite his friends over for a party.

My advise for this, is to ALWAYS schedule a rest day after a thing, if at all possible. I’ve done it for today, as I had a big physically challenging weekend. I gave myself permission to not get things done. No washing, no cleaning, absolutely nothing but the necessities. I kept my yoga routine down to the basics – pretty much just stretching. I have allowed myself to write this blog, as I am doing that in my HBO2 chamber and don’t have to move much to do it. But had the weekend been mentally challenging, then I would have curled up with a trashy novel or some simple crochet and tried not to even think. I’ve already given myself permission for tomorrow to be the same if I need it. Hopefully, that will be enough to avoid the crash.

If you want to read more on my thoughts about pacing, I’ve written quite a few posts about it. You can find them here, here, and here. I mention it a lot and I really do think it is one of the most important aspects of learning to manage the FibroTroll.

Do you get Delayed Onset Post Exertional Malaise? If so, I’d love to hear how you manage it – I can always use new tips!

Exercise and Fibromyalgia

Exercise is such an important aspect of health. Our bodies are designed to move, and to do it regularly. Aside from the obvious fitness aspect of exercise, it has many other benefits. Exercise helps keep our muscles and joints strong, it assists digestion, heart and lung function, blood flow, lymphatic drainage, liver and kidney function and even mental health! Basically every part of the body benefits from moving our bodies.

But what happens when we have a chronic illness? One that zaps energy and causes increased pain? I can tell you. It makes exercise exceedingly hard to do.

Before I was diagnosed, before I had any idea what was wrong with me – that the FibroTroll was coming to stay – and long before I had any idea how long that visit would be (spoiler alert – probably forever), I thought I was just unfit.

I decided to fix this by playing indoor beach volleyball. I enjoyed playing volleyball – I won’t pretend that I’m particularly good at it, but I enjoyed it. I also took up indoor rock climbing. Both of these activities are a lot of fun – and a lot of hard work. Even just walking through sand is harder than walking on a flat surface, so playing a sport on it, is significantly harder.

This turned out to be a bad idea. Fibromyalgia is not the sort of disease that you can force to get better. Until you learn some level of pacing, it is very common to have a push-and-crash cycle. This would happen to me. I would keep pushing until I ended up bedridden. Then as soon as I was able to get out of bed, I would try and do all the chores that I felt guilty for leaving to the knight in tarnished armour, and then relapse.

This sort of cycle continued until I basically became too afraid to push at all. Every activity or function became a source of stress. I would pretty much always flare afterwards. This was a contributing factor for my battle with depression and anxiety.

About 18 months ago, I started seeing both my psychologist and my physiotherapist. With their help I have made small but significant improvements. I have continued working with my naturopath – with her help, and metabolic balance I am back to my ideal weight! I just need to develop some more muscle and still stay the same weight and to do that, I need more exercise.

I joined up to Healthy Moving‘s Coaching and Challenge program – which if you can afford it, I strongly recommend it. If not, just sign up for her free emails and you’ll get some helpful tips anyway.

But the pinnacle for me in terms of improvement in pretty much every aspect of my life- fatigue, pain, confidence, independence, mental health – is that this morning, I went back to Tai Chi.

Tai Chi is one form of exercise that has been actually been studied in randomised control studies and has shown to be beneficial in the treatment of Fibromyalgia. Here’s the link to one such study. I used to go when I was first diagnosed, but haven’t been for a couple of years. It is gentle, can be altered for restricted movement, or even done in a chair! It also focuses on mindful movement, and is sometimes referred to as moving meditation.

This morning, the long suffering knight rode his bicycle to work and left me the car. I was quite determined that I wanted to drive myself. It’s not a long way and I feel I need to get some of my independence back.

I got myself ready – I chose not to do a full yoga session this morning, and made sure to give myself plenty of time. I fed the chickens, breakfasted, showered and meditated, then drove our little manual car to the lesson. I was pleased to recognise one of the instructors cars in the car park when I arrived. Not having to explain myself to a new person was very welcome. I got up the stairs and walked into the room, not realising how much I had missed it until that exact moment.

I managed the entire lesson. I sat down for a lot of it, but I very quickly started to remember the moves. My balance isn’t what it was, but that will come with time. I felt welcomed and valued. I met new people and caught up with old friends. And while I am definitely tired, I don’t have that bone weary exhaustion that comes when the FibroTroll has had enough.

So if you are at a place where you want to try some gentle exercise, or struggle with meditation and need a form of movement mindfulness, then I strongly recommend Tai Chi. If you are in Australia, then try the Taoist Tai Chi Society of Australia. The Brisbane branch has a health recovery class and I can vouch that it is well worth the trip up the stairs!