Topic of the Month: December - Fatigue

Topic of the Month: December - Fatigue

Fatigue is one of the most common symptoms of lupus and it is often described by lupus patients as one of the most debilitating. For some people with lupus, fatigue can be their main symptom and it can even force them to stop working. The reason behind the extreme fatigue is not clear but a wide range of factors appear to play a role, including;

•Disease activity

•Pain

•Age

•Treatment

•Poor physical and mental health

In addition to these, other factors have also been shown to be related to lupus fatigue;

•Depression or anxiety

•Feelings of helplessness

•Lack of exercise

•Smoking

Before a physician can confirm that these factors are related to the fatigue they need to eliminate other possible ‘treatable’ causes of fatigue (such as anaemia, kidney failure or hypothyroidism).

Here are some tips which should help some people manage their fatigue;

Pace yourself – alternate activities with rests throughout the day.

Establish good sleeping patterns – Whilst everybody has different sleep requirements, at least 7 hours a night is recommended for lupus patients. 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.

Rest when needed – Napping during the day may be helpful and is sometimes needed, especially during a lupus flare. If you feel exhausted, make sure you rest rather than trying to fight through it.

Plan ahead – for example, buy gifts throughout the year.

Eat a healthy diet.

Exercise regularly (if able). For more advice on exercise with lupus, see our previous article here - lupusuk.healthunlocked.com/...

Stop smoking if you smoke.

Prepare meals in advance.

Here’s a fantastic article from the Lupus Foundation of America, where lupus patients asked Dr Diane Kamen about lupus and fatigue - lupus.org/webmodules/webart...

We asked you to share your tips on how you manage your fatigue. Here’s what you said;

-“I found self-hypnosis really useful. I listened to it as I went to sleep. I have an iPhone so I downloaded specific apps but I’m sure there are CDs as well.”

-“I took a mixture of supplements from a list I found in the book, ‘Beating Chronic Fatigue’ by Dr Kristina Downing-Orr. The fatigue doesn’t affect me as much anymore.”

-“If employers allow, do what I do….have a nap when tiredness takes over. It helps me through the afternoon.”

-“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.”

-“To stop waking in the night due to pain, my doctor prescribed me with a slow releasing pain killer that works over twelve hours. I take one at 7am and the second at 7pm everyday – 24 hour pain relief.”

-“I have found that I am intolerant to wheat and sugar. If I eat them regularly, the pain and tiredness is so much worse. I have also read that sugar is bad for any type of pain.”

-“My main bit of advice is to PACE YOURSELF. Don’t do everything in one go. Do a job, sit down for a bit. Do another job, have a rest. If you are planning on going out, have a few hours rest before and after.”

-“Combatting fatigue? When I get around to housework, I do this first thing in the morning – a complete blast until I’m tired. After that I do short blasts when adverts are on my favourite TV programmes. It’s amazing how much you can do in five minutes, then you have a 15/20 minute rest before the next five minute blast. It works.”

-“A good Vitamin B complex will assist the body in energy production.”

-“The only thing that even helps is trying not to do too much, not to get stressed and to have very set routines (getting up, breaks, bed times etc.).”

***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 that 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.

If you try any advice from this article and find it helpful, we’d love to hear about it. Please also let us know if you have any other tips to share.

This is the last Topic of the Month blog for the time being. I’d like to thank everybody that submitted their tips and experiences throughout the year which helped to produce these articles. If you have a topic that wasn't covered in 2012 and you’d like some tips for coping with it, please post a question here on HealthUnlocked. We’ll be back soon with a new monthly blog for 2013.

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  • I am always surprised with the reasons given for lupus fatigue. The usual ones are lack of exercise, disease activity, muscle weakness, depression ect, However fatigue has been a major factor of my illness from the outset. Prior to my attack of Lupus I was a very fit and active person, I was not depressed, did not have muscle weakness and exercised regularly. Even when my disease activity is "quiter" I still have major fatigue. I have tired easy exercising but this only serves to exacerbate my fatigue. Has anyone else experienced this?

  • my fatigue is insane ,not just sleepy fatigue ,i wish that it was ,but an overwhelming exhaution with muscle twitches ,irregular heart beats ,sore lymph glands ,stabbing nerve pains,and an awfull unwell feeling with and emotional impending doom type feeling .Ive always sufferd exhaustion my whole life ,but for a good few years i was in a semi remission and could run ,swim ,cycle ,walk ,surf ,and if i pushed a little to hard i would pay for a few days a week at maximum,then off i go again ,not now ,ive been in this flare for 12 months ,and i try to walk gentle because i worry for my heart health ,however the next day like today i can hardly move ,i was awake most of he night with weird muscle twitches and stiffness ,today i am so sore to touch ,this is not a pleasant existence ,i cant be a mum ,cant be a wife and cant be a freind .Fatigue is insane and so much more than just tiredness ,and like you even when lupus was quiter i was always in a fatigued state ,its such a horrid disease ,i feel for all of us ,big group hugs all round ,any good tips ....send them this way ,take care ,brave;)

  • Yes Field I'm the same, have been for years but was very active and never been depressed, I still try to be active when I have a good day but the muscle weakness puts paid to that most of the time!

  • Yes, totally agree with you field. I was always on the go, busy working full time, not into exercise per se but just kept going. Loved to go out and had a social life. Now i am practically housebound due to fatigue. I am depressed but in the main because my body just does not work, it is devastating and life changing. I can hardly walk up the stairs some days, when a few years ago, aged 52, I was out dancing with friends on new Years Eve till 4.00 am!

  • I am fatigued all the time. Even when I get all the sleep I can. I can't recall what normal feels like. Even when my lupus doesn't seem to be that active, I have no energy and can be on "go slow" when getting ready in the mornings. Sometimes it is too much energy to even think .

  • Hi There Field, Yes the fatigue is an awful thing and people do not understand it all all unless they have had it. In my early days of lupus (the first 4/5 years) I used to just work and sleep. I felt like I was wearing a suit of chainmail all day long and carrying the horse too. I did my own research and changed my diet. Bought myself a juicer, started to eat much healthier (if my grandparents don`t recognise it I don`t eat it) sort of attitude. It took a while to see the rewards but it worked I actually took up running 6 years after being dxd with lupus only so I could combat the steroids I was told I would have to take for life. A short while afterwards I came off all meds (6 of them) and stayed off for 14 years. until oct 2011 I was dxd with yet another auto immune Lambert eaton and put back on the drugs to get that under control (6 weeks in hosp, things were grim) Well I am now down to small doses of only 2 drugs now as opposed to 9 in the hospital. I am sure I will get down to zero meds soon even my neuro says so. I put it all down to healthy diet/lifestyle. Its not easy and its hard work but hey the only side effect is more energy and a better quality of life. .Good Luck to you

  • So good to read, i have so much tireness that i want to cry, sometimes even taking energy drinks, do try to hav a good diet, vitamins , cant exercise and scared to take pain killers on a regular basis as worried for the day they stop working.

  • hi, im exactly the same as field and uzi41, fatigue has been with me everyday since 2005, it never eases. i do exercise as much as i can, i pace myself, i nap when i can, i take vit and iron and my lupus meds, yet my batteries never recharge. hate living like this,im only 40 and feel 100, is this what the rest of my life is going to be like?? totally fed up :(

  • Same here caninecrazy....not fare...

  • I am 52 and feel 100 also!I used to be quite active doing Jazzercize ,swimming etc

    .I just can't do it now.I can just about manage to work a full week although it isn't easy as I work in Primary School.Stress adds to my problems a great deal.

    I sometimes wonder if I am just being lazy, but I just can't get the energy to go back to exercise classes.As I say,I am fortunate enough to still be able to work.I know a lot of my fellow sufferer scan't even work anymore.So I am very grateful for this.I will not give in easily!

    The way I see it, I can't work and exercise-it's one or the other!I have put on weight which I hope to tackle this year by cutting down on cakes etc.

    I wish I could take a supplement to help but always worried it will react with the other medication.Oh well I will plod on regardless.I just wish the spring would come as I suffer SAD badly too.Very glad of all the fantastic support on this site!

    Wishing all you a Happy and Healthy 2013.Try to keep smilingx

  • This is the MAJOR problem with my Lupus. I am virtually housebound now and any type of exercise even small amount of housework is too much. I find it very hard as up to a couple or three years ago I worked full time as a teacher, had a social life etc. Now I do virtually nothing....it is not what I had planned for this part of my life and very hard to explain to others.

  • I feel my life is over at 38yrs,everything i love is being taken from me,i dont want my old life but just want to be ,in less pain and stiffness,sleep for six hrs (solid) be a mum ,wife and freind.Chronic fatigue is overwhelming and i wish i could sleep through it but i cant ,keep well my freinds

  • When I was first dxd with lupus 21 yrs ago I used to just work and sleep, my husband would wake me to feed me and i would go back to sleep again. I had this for a few yrs and then I decided to do something about it. I read all I could on alternative therapies, diet , nutrition and exercise and very slowly starting with gentle yoga began to get fitter and more energised. I changed my diet for the better trying to eat mainly foods that my grandparents would recognise.No junk, no artificial sweetners and E number additives. It took me 6 yrs but I came off ALL 6 drugs that I was taking. I stayed off them all for 14 yrs. I began teaching exercise for a living and took up other forms of exercise. swim,cyle,run,tai chi gym etc.I even ran 12 marathons raising funds for lupus. In oct 2011 I was taken seriously ill with another auto immune disease Lambert eaton myasthenis syndrome. It meant 6 weeks in hosp 3 months physio and I was put on 9 different drugs. I was offered help with filling out dissability forms. That was a `red rag to a bull` I was determined to prove them all wrong. I would get back to fitness and get off the drugs once more. On oct 2012 I ran my 13th marathon. I am now down to 2 drugs. steroids and azathiaprine. My neuro doc doesnt think i need them but you cant just stop them i have to be weened off slowly, It wont be long before i stop the steroid and then we will chip away at the aza. Fatigue once again is a MAJOR symptom so it is a battle. However i started REALLY slowly with a walk to the end of my street(it almost killed me) the next day a bit further and so on . Small steps. Most important for us all too is fresh air, the body needs oxygen, even if you just sit out in your garden and breathe deeply every day. You will feel good for it. I have just finished a book on my story of how despite lupus, raynauds, mixed connective and Lambert I manage to run marathons.and teach exercise. I want to share how i did it in the hope of helping others.I am at present trying to get it published `watch this space` In the meantime my friends, Just remember `A journey of a thousand miles begins with a single step` Lao Zue. Find an exercise you enjoy start very slowly, look at what u r eating think would your grandparents recognise it if not dont eat/drink it. and one more thing take time for yourself you are a Human being, not a Human doing as my yoga teacher would always say. Let us go into 2013 with a hopeful and determined Heart. When the wolf howls Howl with him.x

  • So true! Currently in the work/sleep cycle and forget to do everything else, i feel so disgusting most of the time. So much discomfort at the moment that i can't even stand to be touched. You are doing a fab job fighting your battle. Ive just heard i'll be running the London marathon in 2014! Such a great inspiration. Please comment back with the name of your book? Regards :)

  • Hey running the London Marathon next year !!! Awsome have you got a place thru Janine at Lupus uk?? Or did u get in the ballot? Have you done the London before?.. I wish you all the luck and a good day weather wise too. Keep us posted how your training goes...

    My book you ask about is called `Mutiny in my body` how running has saved my life. It is on amazon around £5 free p&p. Also on kindle. Have a good day and Happy running..

  • Just read all your blogs on fatigue,I could of cried when I found out wasn't just me who SLE is playing havoc with not knowing when to sleep n when to be awake,I think I spend prob 75% of my life with my eyes shut at the moment,it's depressing and upsetting for me as I'm only 51 recently,and I have 10 grandchildren who I hardly ever interact with for the passed year when this fatigue got really bad.I went to my doctor who thought he would send me to have my bloods tested to see if I was lacking in something,they took a lot of blood testing everything,when my results came back from doctor there was quite abit going on my Liver was slightly enlarged,I had a problem with my kidneys,which I have to go to Urologist next week about,carbohydrates not bad he said but I am also going through the menopause,I did wonder if combining SLE n Menopause is what has brought on this excessive fatigue? I can go to sleep at night once I get comfy that is joints hurt so figured out packing pillow under me is best for me,I can sleep sound all night,but waking up is a chore,when I eventually wake up,I do potter about and get things done at my pace,but then I'm fit for nothing but sleep again,the other day got up at 8.00am,I went to sleep around 12.30 in my chair woke up at 9.30pm and then went to bed around 1 am,this isn't right is it I feel like I'm sleeping my life away at the moment and it it's really stressing me out,nothing from blood tests indicated anything to make me so tired so doctor hasn't looked into anything more and it's starting to depress me so much now.What is going on with me? Angie x

  • Hi Angie,

    Do you think it would be helpful for me to send you one of our information packs about lupus so you can learn more about the condition and how it affects people? If you'd like one, please send me a private message or email paul@lupusuk.org.uk with your name and address and I'll send one out for you.

  • That would be really helpful Paul I will send u my name and address,thank you so much Angie x

  • Hi all, I have SLE have done for over 30 yrs! The fatigue is horrendous! I have a little toddle now and again but have been to atos for a medical and because I push myself for some fresh air and exercise they have told me I am fit enough for work!

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