I’ve been trying all day to write this post. But in all honesty, I’ve been too tired. I kept nodding off, while reading statistics on tiredness in EDS. These statistics show that over three-quarters of EDS patients suffer from intense fatigue. I’m not talking about the type of tiredness most people experience after a hard day’s work. I’m talking about life-numbing, soul crushing fatigue. And there’s nothing worse than when you try to explain this to someone and they reply ‘I know what you mean, I’m tired all the time too.’ I doubt it.
Alan Pocinki is a sleep specialist with an interest in EDS. This video presentation by him examines the chronic pain, fatigue and associated symptoms that patients with EDS suffer from. I do have to say it’s very long, but like all of Pocinki’s work, it’s very informative. (As an aside, this article by him is a very clear and easy-to-read piece explaining EDS/Hypermobility Syndrome. Maybe one to show friends/family/doctors.) He also makes links between EDS and CFS. In fact, the levels of fatigue are similar, which could be why my neurologist mistakenly tried to diagnose me with CFS when I explained how tired I was.
So, what can be done about it? This leaflet by Ehlers Danlos Support UK has some useful tips. As for me, I rely a lot on coffee ( yes, I know it’s not the best idea!), naps, eating regular meals, and pacing. But despite this, fatigue definitely is one of the biggest challenges I face.
Now that I’ve finally finished this post, with 25mins till midnight, I think I’d better go to bed!
[image of a dark blue background, with the words ‘T is for Tiredness’ in yellow.]