Ehlers Danlos Syndrome – Fighting the Fatigue

I’ve written a lot in the past about my life with Joint Hypermobility Syndrome, but more recently I’ve been diagnosed with Hypermobile Ehlers Danlos (hEDS), a sort of upgrade – for want of a much better word! Classed as a ‘heritable connective tissue disorder’, the new diagnosis of hEDS answers many more questions about my health and the wider implications. Simply put, having hEDS confirmed makes some of the other problems I experience fall into place. One of those major symptoms is fatigue, so I thought I’d share with you some of the ways I deal with a bout of chronic fatigue.

elders danlos syndrome, EDS, hypermobility, fatigue

I am by no means an expert, and fatigue can manifest in different ways for different people, so a reminder that I’m writing from my own personal experiences here. I think however, that the universal agreement is that fatigue is much more than simply being tired. When someone is tired, they can usually attribute it to a particular cause; working too much, not sleeping enough, a big night out, or another contributing illness. With fatigue, the cause, or trigger, is often unknown, or can be something small and otherwise not a problem for a healthy individual.

When fatigue hits me, I don’t often know why, although I’m starting to figure out that it’s not usually one trigger, but multiple things building up over time. So I thought I’d share with you my personal tricks for dealing with the fatigue I experience in association with my Ehlers Danlos Syndrome.

Listen to my Body

When my body says rest. I HAVE to rest. No more pushing through the tiredness, and thinking ‘Oh I’ll rest this weekend’ – I have to take action immediately. I have had to cancel plans, go to bed early, and even on rare occasions, get classes covered, although the latter is usually when fatigue and pain are both at a high level. I’ve also learnt that public transport it exhausting when my fatigue levels are high, so when I can spare the pennies, taking an uber to work, as indulgent as it seems, means I can function in my work environment as well as I can.
elders danlos syndrome, EDS, hypermobility, fatigue

Eat Well

It can be very easy when fatigue hits to haul up at home, order take away or opt for convenience foods. The better way to manage my energy levels is to plan healthy, nutritious meals that will nourish my body, not leave me feel even more sluggish and tired. I keep bulk batches of things like homemade chilli and bolognese etc in my freezer so I can simply defrost some good food without too much effort. That’s not to say that sometimes all effort goes out the window and I order a take away.

Move a Little

Similarly to eating well, it can be very easy to vegetate on the sofa and do absolutely nothing. While resting is important, I find that I end up feeling stiff, sore, lethargic and mentally unhappy if I do this. It’s certainly not the time to be starting a new exercise regimen, or even heading to a yoga class, but it is a good time to go for a walk, do some gentle stretching or simply get some fresh air and a change of scenery.

elders danlos syndrome, EDS, hypermobility, fatigue

Sleep, Sleep, and Sleep Some More

We’ve all had days when we can’t keep our eyes open, and have taken a cheeky nap on the sofa. In the worst of my high fatigue days, I can spend a week sleeping 9-10 hours at night, then another 2 hours in the afternoon, and still feel like I can’t function. You might be thinking that the reason I’m feeling tired is because I’m sleeping too much, and if I were then the case that I couldn’t sleep at night, I’d agree with you, but it’s a different kind of feeling from the grogginess you feel when you’ve overslept.

Keep a Diary

As I mentioned, when fatigue hits, especially when it’s part of a wider chronic condition, the exact trigger is not only hard to pinpoint, but can be a multitude of things that have built up over time. Keeping a little diary of your daily activities, or anything out of the ordinary, can help build a picture of the circumstances and either avoid them in the future, or if they’re unavoidable, be aware that it could be a trigger and be prepared for it. I have to credit my Mum for that suggestion (mainly because I’m sure she’ll read this)!!

elders danlos syndrome, EDS, hypermobility, fatigue

With chronic fatigue and chronic pain (I’ll write about that another day), it’s a delicate balance between keeping fatigue at bay, but also having a life! I’m aware that some activities I do, such as surfing or certain workouts, will result in a couple of days of pain or fatigue. I love these aspects of my life, so I allow extra rest days in the aftermath, mainly because the benefits, particularly to my mental health, outweigh the fatigue.

I stress again that these are my personal ways of dealing with fatigue, and that my condition is Elhers Danlos Sydrome, not M.E. With my diagnosis being fairly recent, I am still discovering new things that do or do not work. I have appointments with clinical psychologists coming up to work on how I cope with fatigue and pain, and I’m looking forward to managing my condition a whole lot better in the future!!