Fatigue in Ehlers Danlos Syndrome
These parents of children with EDS are empowering them with the confidence and understanding to develop their own independence.
“I was going to call this post “Fatigue in Ehlers Danlos Syndrome” but that sounds a bit grown up and medical so I thought I’d go for the outright question, Does Ehlers Danlos Syndrome Make You Tired?
Now, this could be a really short post because there is one utter, complete, sky writeable and overwhelming answer to the question.
Does Ehlers Danlos Syndrome Make You Tired??? YES!!!!!!!!!!
“Now, although that’s the main answer, I’m going to try and explain a bit about why it makes you tired and how that tiredness can actually be more overwhelming than other parts of the condition. As I’ve written previously, Ehlers Danlos Syndrome (EDS) affects everyone who has it in slightly different ways. Those differences can be subtle or massive depending on who you compare and when. Children who have inherited it from their parents may show more symptoms (there’s research going on as to why) but then again, if you know there’s a chance of them having it, odds on you’ll be looking far more carefully than you would otherwise.There are lots of reasons why EDS makes people with it tired:
- Getting your body to do what you want it to do is hard. When joints are lax and messages get garbled between the brain and where they’re going means that doing the most routine of things (like standing up) requires your muscles to work extra hard. That makes you tired. Things like going from standing to sitting and then up again can be exhausting – especially for children in schools who are going to and fro from the carpet to tables as their teachers talk to them and send them off to their next task
- Pain. Being in pain is tiring, mentally and physically. If moving around hurts and it’s hard to do what you’ve got to do because your joints are lax it wears you out. Add in the factors above and you’re really tired.
- Medication. Some meds make you tired, woozy, nauseous and generally just meh. Add in the two points above…
- Poor sleep. Many people with EDS find it difficult to sleep – due to pain, dislocations or subluxing and other conditions related (or not) to EDS.
- It’s an invisible condition. Well, not if you’ve got a leg in a brace, splints on your wrist or you’re bending your shoulder round backwards – but essentially it’s something that people can’t see – friends, teachers, colleagues or otherwise. Trying to ‘keep going’ and ‘prove that you’re up to the job’ (especially in the current financial climate) is exhausting. For children, keeping up with their peers in both the classroom and the playground can be exceptionally hard work.
The tiredness associated with EDS has often been diagnosed as Chronic Fatigue Syndrome and/or ME. In some cases people do have both, but the symptoms of the tiredness from EDS are difficult to differentiate from CFS. The problem with EDS is that if you’re so tired you don’t exercise and work the muscles the tiredness increases – rest does not necessarily bring an improvement.
In pretty much any other condition, pain is a warning sign – slow down, something is wrong! In EDS pain is often a sign that things are too weak and therefore need work to get them up to strength. Finding the balance to achieve this strength without getting into a ‘boom and bust’ cycle is really hard. Working through the exhaustion can be soul destroying at the time – especially when there is no guarantee of improvement – however, having seen for myself the way that the rehabilitation scheme works at Great Ormond Street Hospital, the intensive physio followed by stamina work (getting out in London and having fun!) I can completely understand why it has to be done. I’m not going to add any direct links here but if you Google (other search engines are available) Sue Maillard you may be able to find all sorts of interesting information.
I guess one of the other main things that affects tiredness is diet and again, EDS throws a curveball into the equation. Eating when you’re tired for an energy boost can seem a really good idea. You know, just to get you through the afternoon as you’d actually rather be curled up in a corner spark out. EDS doesn’t seem to agree with this theory (which is why I live in a biscuit free house) – generally if you have EDS you won’t be able to take part in the activity that will burn off these extra calories and therefore weight can creep up. Then it’s more effort to move your body, your lax joints and the rest of you around, so you get tired. Vicious circle. I was told by a consultant that those with EDS who follow a high protein diet tend to do well – but I have yet to find any other evidence to support this – let me know if I’m missing something?
The guidance I was given for the children was to keep them going with activity as much as possible. I limit screen time and try and get them outside doing stuff whenever I can. When things need to be quieter we try and do craft or colouring. It’s not easy. I let them play on the Wii (balance games!), I do let them watch television but I know from bitter experience that too much lounging on the sofa increases their tiredness levels rather than reduces them.
I genuinely don’t think you can reduce the tiredness that EDS brings to zero – however, there are loads of tactics that can make life easier both for children and adults
- Pacing. Meaning pace the tasks that have to be done. As an adult, if you need to strip the beds, do one a day rather than all of them at once. If you need to hoover, do a room or two at a time. Personally, iron when only absolutely necessary (5-10 times a year is fine).
- Planning the day – I guess that’s pacing as well. At school, a child with EDS is going to be tired when they arrive and even more tired, well, about 15 minutes later once they’ve sat on the carpet and got up again. Understanding this fatigue and adjusting what needs to be done makes life so much easier. Even things like having a chair rather than having to get up and down from the floor can help. Or making sure that the child has their classroom chores in the morning, not last thing in the afternoon. Extra support will be far more beneficial at the beginning of the day.
- A sensible diet – boring but true. Relatively low GI diet with snacks and no overwhelming sugar highs/lows will help. Avoid foods and drinks that will exacerbate symptoms.
- Do stuff! Sitting on the sofa can make things far worse. Be it a very very gentle walk to the shops or heading to the park after school for 15 minutes, the muscles will get a little stronger and in time reduce the fatigue. Having seen this strategy in action, it really does work in many situations.
- Make sure your working/living/learning environment is suited to your needs and doesn’t require extra effort to sit in a good position, reach things or get involved.
This list could go on and on but everyone is different and it’s really hard to cover everything. I guess the big one is possibly the hardest – asking for help. It makes me twitch just writing it down. It’s a massive thing to do and can easily feel like the most blatant admission of failure that there is – but, it can make a huge difference. As parents of children with EDS I guess our job is to empower them with the confidence and understanding that asking for help isn’t a bad thing – whilst letting them develop their independence at the same time.”
“EDS is not an excuse to get out of chores, schooling or other less than fun tasks, saving the energy for the fun stuff. It’s something that we have a degree of control over and we need to learn to manage our energy and subsequent fatigue in a way that means we can live a fulfilling and as active as possible life. Ehlers Danlos Syndrome does make you tired, and more tired than someone without it, but that doesn’t mean you have to miss out.”