People often say they’re exhausted when in reality they’re just tired, caused most likely by something such as working or playing too hard, or being stressed. People lead very busy lives these days, so tiredness is not unusual.

What people tend not to understand is that tiredness isn’t the same for everyone, and it’s very different to the fatigue caused by chronic conditions such as lupus.

Tiredness is commonly caused by a lack of sleep, so is also often fairly simply resolved by a good night’s sleep. In our case no amount of sleep will help, that is if we can actually get to sleep!

So, what is fatigue? There’s no one agreed definition. There is something called ‘the Piper fatigue scale’ to measure levels. Piper defined fatigue as “an uncommon, abnormal or extreme whole bodily tiredness disproportionate or unrelated to activity or exertion”, which explains how we’re exhausted by doing nothing.

Fatigue is a constant feeling of being tired and no matter how much sleep you have you still feel tired. It affects your ability to function at work or be productive at home. It feels like a combination of having flu, jet lag, missing lots of sleep and having been to an all-night party, so it’s excessive tiredness.

Fatigue is one of the most common symptoms of lupus. In fact, most people with lupus have fatigue at some point in their illness. Patients often say that the constant fatigue is the most troublesome of all their symptoms. You’d think that pain would be reported as the worst symptom, but with pain there’s usually something you can take to ease it off, even if just for a short period of time. With fatigue there’s no medication or treatment that can help it.

Lupus fatigue is extreme and can impact on all aspects of your life. Even things that others take for granted such as: preparing food, taking a shower, doing the laundry can be impossible.

If you say you’re in too much pain to do something, others understand, but for some reason they can’t understand when you say you’re too tired to do something. This can be very frustrating as people who have never suffered from fatigue think it can be sorted out with a nap and brush it off by saying they’re tired too (which is very annoying!), they can’t understand how it feels to still feel tired even if you had 10 hours sleep, or need a nap if all you’ve done is got up and got yourself showered and dressed.

Fatigue can also cause confusion and memory problems. People often feel as though we aren’t listening to them, it’s not for lack of trying, but mentally processing things can be difficult. It’s the same with participating in conversations, it takes all our concentration to keep up with what’s being said let alone thinking of an answer. Lupus patients have what we affectionately call ‘lupus brain fog’, it includes the inability to remember words, even the simplest everyday words and it’s extremely frustrating. Unfortunately fatigue makes brain fog even worse.

Fatigue will mean that you may have to prioritise activities as otherwise you may feel overwhelmed. Planning is often the key to this, make lists of what you want to achieve, then put them in order of most important first. Again be careful not to overwhelm yourself by making very long lists, start with things that are vital (maybe 4 or 5 things), then as you cross off tasks add things that are next in line of importance.

Consider breaking the large tasks into smaller more manageable tasks so you can rest in between tackling them. If you don’t have any energy at all to do a task on one day don’t worry and don’t force yourself to do the task, just reschedule. I’ve said this many times before, but we also need to learn how to say no. You may have to refuse invitations to events, requests to assist others etc, but for the sake of your own health please consider the word ‘no’ – in a polite form of course!

The other thing to consider is keeping a note of activities and rating them to see which make you feel really awful and which cause less problems, which may help you plan in future.

Here’s some people describing what it feels like to have chronic fatigue:

• “I get confused over the smallest things. When my speech becomes slurred. When I start losing grip and dropping everything. When my limbs feel like they are heavy and like they have 10-ton weights attached. When I can’t wake up in the morning. When I can’t stand in the shower or lift my arms to wash my hair. When no matter how much sleep I get, every part of me is exhausted. Tiredness is so easy to cure. Have a nap or a good night’s sleep and you wake refreshed and eager to take on a brand new day. Fatigue is never-ending and you can’t get away from it.”

• “Sleep doesn’t refresh you. Even the little things cause a fight-or-flight response, even simple things you would normally enjoy doing. Being overwhelmed by everything, even fun things. A week feels like a day. Eating feels like too much work. You don’t feel like reality is anything more than a dream happening outside of your head. Cancelling plans is a relief instead of a disappointment.”

• “Your entire body feels like there is cement running through your veins instead of blood.”

• “I don’t have the energy to raise my head, let alone my arms (or fingers). My eyes burn. The thought of a shower makes me want to run in fear. I don’t dress that day (or cook). I’d rather be hungry than use the energy to clean/cook.”

• “Tired with a chronic illness is waking up tired, and not just mentally but physically. Even on the good days, you are exhausted and sleep doesn’t help — you are always sleep deprived no matter how many hours you get a night.”

• “Being tired feels like my whole body weighs four times as much as it does, and it’s a trial to drag myself around the house… Being tired is feeling so much fatigue I used voice dictation to write this comment instead of actually typing it with my fingers.”

• “The exhaustion my conditions cause me leaves me trying to talk my legs into supporting my body, it’s getting through a simple task and needing to rest from that, it’s struggling to speak and find the correct words. I break down constantly because my brain fails me just as my body does. But along with the physical exhaustion comes a great deal of mental exhaustion… the kind of tired sleep won’t fix.”

For further advice on fatigue please see the article on our website.

Angie Davidson

The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice from a qualified physician. Find out more in our Terms of Use.