What is fatigue?
Fatigue is a general loss of energy that includes both physical and mental exhaustion. Fatigue may vary from mild (affecting people only trying to do something active; they then feel better with rest) to severe (which causes problems even when resting).
“It feels like I am running on Smart Price batteries and everyone else has Duracell.”
Almost 90% of people with lupus report experiencing fatigue, making it one of the most common symptoms and it can often cause substantial impairments in quality of life and work disability. A survey of LUPUS UK members revealed that 79% ranked fatigue as one of the three most difficult symptoms to live with.
What causes fatigue in lupus?
Fatigue may sometimes be a direct result of the systemic inflammation caused by active SLE, in which case it will usually respond well to treatments that control the underlying lupus. Fatigue can also be the result or one (or a combination) of many other problems such as;
- Sleep disorders
- Poor lifestyle habits
- Side effects from treatment
Therefore if somebody with SLE that is well controlled with treatment is still experiencing significant fatigue then these other factors need to be considered and treated appropriately (where possible) by healthcare professionals.
“I got really exhausted before Christmas and was blaming it on taking on too many commitments but went to the doctor anyway. I had a lot of blood tests done and it turns out my thyroid was becoming very under active and I was low in vitamin D. I have only been on the increased dose of thyroxine for a few weeks but I already notice a difference. I also experienced extreme fatigue when my iron was low.”
What can I do to help manage my fatigue?
Establish good sleeping patterns
Whilst everybody has different sleep requirements, at least 7 hours a night is recommended for people with lupus. It is also important to be aware that too much sleep isn’t healthy either as spending all day in bed can cause muscles to weaken, which can contribute to feelings of fatigue.
“Managing fatigue is not just about sleeping, it is also about being able to relax and not stress if you can’t sleep or feel you are sleeping too much. Everyone should develop their own strategy as no two people handle this in the same way.”
If you have difficulty establishing a good sleeping pattern it may be worth examining your personal sleep hygiene and potentially making some changes to your evening routine. The NHS website’s sleep section has some great articles and resources available HERE.
“They say that phones screens etc. don’t help your body prepare for sleep; maybe you could read a book or listen to music later on in the evening to let your body wind down more. I’m currently trying to learn to meditate to see if that helps me with sleep and pain.”
“I have stopped drinking tea or coffee or fizzy drinks all. I drink hot water with lemon first thing in the morning then just bottles of water with no fluoride in it.”
“My tip for those waking during the night regularly with pain comes via my consultant; don’t wait for the pain to start especially at night when you know it’s going to wake you up. Take pain-killers before you close your eyes and take pain meds regularly.”
‘Pacing’ is all about balancing activities and rest to help manage your energy levels and try to prevent a ‘boom-and-bust’ routine where you attempt to achieve too much on days when you have more energy, which results in a crash and worse feelings of fatigue in the future.
“Fatigue is awful. I know that days I feel good I do far too much and then suffer for it. It’s like my body hits a brick wall and I have to get to bed for sleep.”
Pacing techniques can help you to become more aware of your own limitations, enabling you to plan the way you use your energy more carefully. Hopefully by practicing these techniques over time you can gradually increase your level of activity.
“I’d just like to say pacing and resting has to be the biggest help – and to recommend a blog you may not have come across: Despite Lupus by Sara Gorman (http://despitelupus.blogspot.co.uk/). Sara’s mantra is pacing – and she has loads of other tips for people with lupus too. She helped me understand the importance of planned resting and how to use it best and I’m sure she has something useful for everybody, whether they have lupus or not. The quick way to explain it is do things in bites and rest in between. Iron a few shirts, have a rest, iron a few more, have a rest; rinse and repeat. You can often do something else while sitting resting so it doesn’t waste time really. And by doing that you can manage to achieve far more in a day than just bashing on until you drop and the next day is a washout as well (or even inducing a flare).”
An important aspect of pacing with lupus is to listen to your body. It is important to identify and acknowledge signs that you are in need of a rest, rather than trying to push on and ignore the warnings.
“The key to fatigue is; if you need to sleep, sleep. Just set an alarm so you wake up after a certain time, then get up and do something. I know it’s hard with pain, swelling and fatigue but it does help. I try to limit it to 30-45 minutes and I try to not nap later than 6pm because I won’t sleep at night. However, sometimes over an hour is necessary and I just go with it. I do set alarms so I wake up too. I used to just sleep all the time and some bad days that’s still what I do. I get up, have breakfast then start falling asleep so I go through to sleep and I wake up at 5pm! Sometimes, that’s the reality – not listening to your body is really bad for lupus but equally, not pushing yourself even a small bit is bad for your mental health which causes the physical symptoms to get worse.”
“Just listen to your body. If you have to have a nap during the day then just do it. Don’t feel guilty! I’ve been diagnosed for over 21 years and obviously know and feel when I’ve done too much!”
“If employers allow, do what I do….have a nap when tiredness takes over. It helps me through the afternoon.”
To learn more about pacing techniques and how to apply them to your lifestyle, here are a couple of great resources available online;
South Devon Healthcare’s Patient Guide, ‘What is Pacing?’ – HERE
Action for M.E.’s booklet, ‘Pacing for people with M.E.’ – HERE
“I try to keep my body and mind as active as I can (aided by my 6yo, 4yo and 3 month old sons!) and I take full advantage of the better days – not pushing past my limits but just pushing myself enough to enjoy my life. It’s a really difficult balance to achieve but I know I feel worse, both mentally and physically, if I simply give in to the fatigue and do nothing.”
There is evidence that exercise can be beneficial to managing fatigue in lupus. It is important to ensure a balance between exercise and rest. Listen to your body because it will tell you when you need to rest. Activities that strengthen your stamina and don’t cause stress to the joints and muscles are advised. These include swimming (to provide all over fitness), walking and cycling. Increasing stamina allows you to gain more strength and muscle tone. Jogging should generally be avoided as this may prove too strenuous.
It’s very important to recognise that lupus affects everybody differently and so not everyone with lupus can do a wide range of exercises, but most people with lupus can take part in some form of activity. It is also important to realise that the amount of activity you can manage is likely to fluctuate as your lupus does. It is always advisable to ask the advice of your Physiotherapist and/or Occupational Therapist when thinking of starting any exercise regime.
“I am a fitness instructor and I find exercise helps, but you have to be SO careful not to push it too much. My advice is to start with what you can do whether that is walking to the front door or walking to the end of the street, or jogging a mile. When you feel you can do a little more, or do it again later in the day give it a go but listen to your body.”
“For me, I fight my lupus with exercise and will continue to do so for as long as I can. I started off by walking to and from work (one mile each way) for a good few months and then progressed to getting myself a gym membership. I currently do spin and body pump as I find high impact is too much for my joints. It’s not been easy and I still have bad days but even the bad days aren’t a patch on how I felt before I started my exercise journey.”
“I manage mine with exercise. I run outdoor buggy classes for new mums, with fast paced walking and all over toning. They work really well for me too and I am thinking of launching some more general ones, with a mind to helping fellow lupus sufferers. I loved running and still do, but do less and build up much more slowly than I used to pre-lupus.”
If you want some guidance on getting started with some light exercises that you can do within your own home, we have a video presented by LadyXsize (Nana Akua) which you can watch HERE.
Eat a healthy diet
What you eat is likely to make a difference to your lupus. There are some foods that you should avoid and others which may help to keep you healthier, but there is no simple answer which will help cure your lupus symptoms.
“I’ve found making changes to my diet has helped.”
If you frequently struggle with fatigue then it may sometimes be tempting to look for food/drinks which may appear to help. Some foods can give you a quick buzz of energy, like biscuits, cakes and fizzy drinks, but this will not last and you will feel exhausted more quickly than if you had eaten more healthy types of food containing less sugar and less refined carbohydrate.
“I’ve been taking Holland & Barretts’ Women’s Exclusive Formula for around three months and I have more energy and can go through to 5pm without feeling tired. I have had only one flare in two months. I would recommend it, just check with doctor first.
You should aim to eat a healthy balanced diet. For further information you can download or view our booklet, ‘Lupus and Healthy Eating’ HERE.
For further advice on a healthy, balanced diet which can help you to ‘banish tiredness’ the NHS website has a helpful page about ‘The energy diet’ HERE
Due to the varied nature of lupus, some people may find that they are more sensitive to certain types of food. Keeping a food and symptom diary can be a great way to identify any foods that may be contributing to increased fatigue so that you can avoid them in the future. A good example of a food diary can be downloaded from Allergy UK HERE.
“I’m much better if I stay away from wheat or if possible from gluten. Although I don’t have full blown Coeliac I feel by looking after my gut with a very wholesome and balanced diet my symptoms recede a bit and I sleep better.”
Adapt your social life
“You still need to do things and take part in life but may have to modify what you do. I organise girly nights with my friends but they know and understand if it’s a bad day. We will still meet but have a night in and chill out. If people want to help you then let them. Would you help them if they needed it? Yes, you would.”
How can I explain my fatigue to others?
It can sometimes be difficult for family members, friends and work colleagues to appreciate and understand what you are going through, and why constant tiredness is so often the central feature of this mysterious condition. This can be common particularly where there are few (if any) visible symptoms.
“I get sick of people saying, “Why don’t you try to fight it rather than giving into the fatigue”. I wish that all those people could feel how we feel.”
“Most people really misunderstand [fatigue]. So many have said to me, ‘Do you not sleep at night’ or even ‘You do nothing to be tired’.”
LUPUS UK has a wide range of leaflets and booklets about lupus that are available free of charge. Providing copies to family and friends and discussing it with them can help them to understand the impact that lupus can have. We now also have guides written especially for carers and employers. All of these can be viewed and downloaded HERE.
“The spoon theory is a good way to explain things to friends and family. It can also be useful to help you pace yourself if you estimate how many ‘spoons’ you have and fit that to what you want to do each day – http://www.butyoudontlooksick.com/category/the-spoon-theory/”
“It’s like you have a plug that’s been pulled out of the wall and you can feel your power supply just draining – like a mobile phone being on its last 5%; you just know any minute now it’s gone! The draining feeling is actually something I can physically feel, like I’m being pulled down, making it more of an effort to walk and thin.”
It may help your family or friends to read/hear about the experiences of other people with lupus. You could invite them along to a Lupus Support Group meeting or encourage them to have a look at our forum at www.healthunlocked.com/lupusuk
***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***
Thank you so much to everybody who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.