Fatigue : Hi, this is my first time using support... - LUPUS UK

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Fatigue

Lioness12267 profile image

Hi, this is my first time using support/forum like this since my diagnoses of SLE in December.

I have a four year old daughter at home and I’m really really struggling with fatigue, I am constantly tired and exhausted. I’ve tried lots of different things such as a better diet, more sleep, exercising etc. nothing seems to be reducing it and I’m really struggling with this.

Does anyone have any suggestions at all that could hopefully help with this? I feel as though I’ve exhausted everything I could try but I’m sure there must be something that could help boost my energy. Thank you for any help :)

34 Replies

I wish I could help but I am currently sleeping 12 hours a night and feel no better for it. For me it's the worst part of lupus, pain I can deal with but fatigue just wipes me out.

I’m the same! I can deal with joint pains and all the rest but the tiredness is completely bugging me and tried so many things but nothing working at all

Fatigue is my worst symptom.Are you on any medication? has your b12 and thyroid been checked ? Sleep,sleep and more sleep.Naps are good some days I need 2 most days its 1.learn your boundaries and don't go past them even on days when you feel better.stay out of the sun, cover up head to toe and use factor 50.be kind to yourself and Google the spoon theory it's brilliant xxxx

Thank you for replying, yes I’m currently on methotrexate, Hydroxychloroquine and folic acid. I also take vitamin D everyday. I get my bloods done regularly due to the methotrexate which they all come back clear which is sometimes frustrating because then there’s no explanation for the tiredness if that makes sense? I also find myself needing to nap multiple times a day but isn’t always possible due to my young daughter so it’s hard to actually take that time to relax or nap. I’ll look that up :) x

Yes it makes sense....I'm on mycophenolate and hydroxy.my bloods are currently every 2 weeks and are fine. I take thyroid meds and have b12 injections.i know its not easy to nap my children are grown up but I have grandchildren.pacing yourself is about the best weapon we have .accept you can no longer do everything some things just have to wait until tomorrow xx

I do find the sun drains me if I'm out I it too long x

Thank you, this has been really helpful :) Hoping to maybe give that spoon theory a go and see if that hopefully helps me to pace myself a bit more :)

It's not easy to master believe me we all lapse...I did on Thurs and did too much 🙄 but you soon realise that by pacing yourself you keep things on a even keel rather than pushing the boundaries and having a couple of bad days afterwards.its not easy saying no to things/people but at times we have too because we realise it will be too much.the spoon theory is also handy for people who struggle to understand how you feel.you arnt alone and the next time you nap you can remember we most probably will be too .

Make things easy for yourself .... sit down to do things,do meal prep in a morning, I'm not one for ready meals but keep some in the freezer for bad days ,do a job then rest,clean 1 room at a time instead of the whole house,dust one day hoover another etc xxx

Honestly, thank you so much! You have been a fantastic help! It’s nice to know that there is somebody else that struggles with this. When trying to explain my tiredness to family or my partner I think they see it more as I’m being “lazy” and that’s just not it. I often do big house cleans and I think I’m gonna need to learn to slow it down a bit instead :) xx

cctexan profile image
cctexan in reply to Lioness12267

I got diagnosed in 2016, and I swore I would never be one to layabout. I always have worked since 14

I got married in2013 and constantly worry/ obsess that Duane will think I’m a burden because even though I’m on disability, I feel I should do more

He had been laid off in January and spent 5-6 weeks with me for first time. Turns out seeing me au natural scared him. Raccoon eyes , anemic skin, lots of sleep, seizures, etc. him working away for a year made it easier to deny my illness

Maybe your family being near, doesn’t see your illness yet. Ask for help. My husband said I need a caretaker to do the heavy stuff. Maybe that would help

Does your dr give you notes on your visit to share? Maybe use your phone to record the visit?

I love my hubby but sometimes it’s like he goes into denial bc of the methotrexate shots. I get really sick. His dad died of cancer. We never know what other people think. Gotta ask honey

Lioness12267 profile image
Lioness12267 in reply to cctexan

Thanks for commenting, I’m quite similar, I have worked since I was 16, especially with being a really young mum. I have been signed off work for the last 4 months and I’m due back this week and I’m dreading it because I am a care assistant and do 12 hour shifts and I get a lot of joint pains in my hands and feet but most of all worried about my energy levels. I find myself having multiple naps a day when my daughter is at nursery, it’s really caused a lot of difficult at home as I haven’t got the same energy levels even for simple things like playing with my daughter. My partner has been supportive but he works all week and does a lot of house work when he comes which also causes issues because I think he sometimes sees me as being lazy when really I really struggle with my energy levels.

It’s mainly just me and my daughter in the house all day so it’s really difficult to find time to relax and get energy back.

My doctor doesn’t give me any notes or anything like that, it could be worth recording next visit.

I get my bloods done every 2 weeks as I’m on methotrexate medication along with Hydroxychloroquine and folic acid. My bloods come back normal which in a way is frustrating as it feels as though there’s no reason for my exhaustion constantly if that makes sense?

I’m just a bit fed up always looking ghostly with big dark circles and feeling tired all the time. I have had a look into what others have commented and hoping to try these out as I really need to find an effective way to gain energy.

cctexan profile image
cctexan in reply to Lioness12267

I stopped wearing my makeup bc people would say, you don’t look sick. I’d reply you don’t look stupid and yet here we are.

Read that on a shirt. I’ve been clean and sober since 2003, and newly sober people don’t have much subtlety.., gotta be blunt lol. Plus I am tired of playing a character for the ppl I don’t know. I save that energy for close family This last week was the first week I asked ASKED for help. It was awkward. But I would help them. My husband said “ did you ask for this “ ? No, so don’t worry

You are blessed with multiple blood tests a month. Mine ended in 2019 bc of COVID and I changed the insurance. Doc wouldn’t see me. I went off my meds to boost my vaccination efficacy

I have new dr appt in 10 days. But all the drs seem to test 3 months and only certain tests are repeated. Others were done once. And she never explained what they meant

Ultimately that’s MY FAULT bc I’m a sheep. I take the pill the notes I wrote and go home to google.

That’s not right

I have a brain injury so I forget to record the visit. Thanks for this post cus I’m putting it on top of the list of questions that I review before the appointment

I suggest you try to get your important questions answered

My labs flip flopped early on. Like my I had ANA then negative 2x, positive next.

My c reactive numbers were high every test I had but one(15 time) I’m in a flare nonstop it feels. As soon as my husband or mom get of the phone, I feel so much better lol

apparently I m constantly in stress bc that’s what triggers me)

I started having a titer, always had kidney info and the last two had blood or protein

I say that as I first knew something was wrong but couldn’t pinpoint it, my labs came back as MCTD. And mild at that but within 3 years everything changed. So if you are still mild , don’t rush for a label.

Because I’m now horizontal more often than not.

Not sure what to look up but I think you may be to ask for adjustments from your employer to accommodate your chronic illness.others may be able to say more.i used to work in end stage dementia and have to give it up so I know how hard it is.have you applied for pip ? I wonder if you are entitled to the disability element of wtc ? X

Have you had iron studies done? I wonder what your ferritin is? Mine was so low I needed iron infusions and it helped.

I do get my bloods tested every 2 weeks and they all come back clear, but it is getting really frustrating now

Yes but have you had iron studies? Not your regular FBC, u&es and LFTs, but Iron studies? That would be useful information to have

Oh, no I’ve not had iron studies done. That could be worth a go. I would have assumed my iron levels would show up in hotmail blood tests

No, you'd need iron overload studies to get the full picture. Just because your HB is OK doesn't mean your iron is. I have no idea what Hotmail bloods tests are?

If yo mean a pill - sorry, there isn't one unless there is a specific vitamin or other substance deficiency causing it. Fatigue is an inherent part of almost all autoimmune disease and the main way of managing it it lifestyle changes and pacing. There are links in this post I wrote some years ago that you may find hepful:

healthunlocked.com/pmrgcauk......

It doesn't matter what the label says - whether it is lupus, Sjoegrens or anything else, the fatigue is a common factor.

Hi,

This seems like CFS (chronic fatigue syndrome).

Not ordinary tiredness!😩No actual “cure” but…?🧐

Goes with any AI diagnosis.

My strategy if you’ve got lupus and many times I fail to do the housework because of it is this:

* loads of positive self-talk e.g. “I will do the laundry today…etc”

*a simple task list with time limits

*forward planning and rewards for completion

*a diary of all my tasks, actions for the day even if it’s “nothing”👆🤣😩

I know it’s just basic psychology!

But do get all your blood levels checked!

Plus your biochemistry sorted!

Everyone has given you really good advice but another thing that might help as a mum to a little one especially is to simplify everything you can.

You mention a big clean of the house well There is a cleaning routine called ‘The Organised Mum Method’ and it shows you how to clean your house in 30 mins per day Monday to Friday with weekends off. People with in invisible illnesses like us can split that 30 mins into three 10 min chunks if needed but the system really works and when my house is tidy clean and organised it mentally lessons my fatigue if that makes sense?

Preparing food always make an extra couple of portions for the freezer for days you just can’t summon up the energy to cook. I also have things like frozen garlic and chopped onions in the freezer for days I have less energy so it makes it much easier and still fresh ingredients.

If the food shop is your responsibility then order online and get it delivered.

Get something like an alexa to set reminders and lists as I find my memory is worse when I’m in bad fatigue and again if I don’t have a routine for this I think my stress of my load or worrying I will forget adds to my fatigue.

Medication and prescription reminder App - I use Medisafe App

Order Sunscreen on prescription and then keep a bottle in your bag.. one upstairs and one downstairs (easily if you’re nipping in the garden) without having to go back upstairs to get it.

All little things but each system you create along the way will simplify your life to conserve that little pressure energy you have and your mental strain it causes.

Would be good to hear what others do to help themselves in these types of way?

Great reply Bobby.Meals in the slow cooker are great too.i set a task of the day if I do it great if i don't then no worries.dog food I buy in bulk that lasts 3 months. I also have frozen garlic etc and use diced veg and grated cheese when my hands aren't very good.i only iron what i need too...thankfully school uniform days are done. Get others in the household to help with things too x

That’s another good point re bulk buying less hassle, less stress to buy less often.. I bulk buy things like washing powder, toilet rolls.. saves money but more to the point it’s less stress and brainpower. And yes delegate where and if possible.

Fantastically well organised! Absolutely no brain fog here!

Miracle self management!👏👏👏👏👏👍❤️

This is genius coping.🤣

Oh absolutely I have brain fog. The fatigue and brain fog gets so bad some days I get home from work and I want to cry from sheer drained to the core ill health fatigue and I don’t even have the energy to get undressed to go to bed it’s horrendous… my arms burn just brushing my hair or my teeth! So all these simplified systems help me along the way. The do not cure me, they don’t suddenly give me energy but when I’m able to implement them they help and the days I simply can’t do anything means that I’m not living in a total mess as the small baby steps along the way means things don’t always collapse around me.

Keep it going babes!🤣👏👆

The long covid Facebook forums have lots of things on fatigue, as do the ME groups. Essentially, pacing works best but I am not sure your four year old will go with it.

I have nothing to add to all the replies and advice, except you are not alone. We have all either been there or in the same boat at the moment. Be kind to yourself, don't focus on the things you can't do and pat yourself on the back each day for the things you have done, however small.

Hi Lioness,It's going to be difficult to pace yourself when you have young children. It's just a fact of the stage of life you are at.

Last autumn I started following the diet recommended by the American doctor Brooke Goldner (look her up). It was recommended to me, and I have to say, I didn't believe it would work. It's been life changing for me, particularly the increase in energy, decrease in fatigue & weakness.

It's a tough diet, but I knew there was emerging medical evidence that illness like Lupus could be related to imbalances in bacteria deep within the digestive system/bowel.

lupus.bmj.com/content/8/Sup...

What sold it to me is that Dr Goldner reports improvements in as little as 2-6 weeks, so I thought I could just tough it out for that long.

First few weeks were tough & I got quite low. Week 3 the inflammation in my ligaments eased. I got up one morning & realised I wasn't in any pain from them. First time in 4 years! Week 4 my old energy came back & with it my zest for life.

Think about it. If you decide to give it a go you will need to plan. I spent 3 weeks working out what I could & couldn't eat.

Take care

Sarah x

Hi Lioness Sorry to hear about your fatigue problem -- it is sadly, a common symptom of Lupus. You have already had many good suggestions. Here are a couple of other points to think about. If you were only diagnosed in December it could take a good few months more before the MTX & Hydroxy start to really make a difference. As to whether that difference will include the fatigue issue I don't know -- sorry.When you say that your blood tests come back "clear" --- I wonder whether you have just been told they are clear (sometimes over the phone) OR whether you have seen the results yourself. We ask for all blood tests to be copied to our GP so that they are put on Patient Access which we can then see record, and query, if there is something there that needs to be questioned that the medics have not noticed.

Finally, I see that iron tests have been mentioned. A very high proportion of people with Lupus also have anaemia which also causes fatigue. You are probably taking folic acid to offset the nausea caused by the MTX. It may be worth also asking for a folic acid test as a lack of it can contribute to the anaemia. Maybe you need more of it.

Sorry there is no direct solution for fatigue but hopefully amongst so many good ideas you will find a way forward. Best of luck.

My bloods go onto patient access too so i can scrutinise them myself and query them especially if they are borderline as they will still tell you they are ok.i think getting into the habit of asking for test results at the start is a good thing .....they know they can't get away with it with me now 🤭 x

Hello. Fatigue is a tough one. I dont know if my fatigue story will help you as I dont have Lupus I have MCTD, ILD and APS. My fatigue was crushing. I could only be functional about 4-5 hours a day total. The rest was sleeping. I was undiagnosed as I was in a state in the US where medical care is the worst in our nation. They told me I had RA and that didnt make sense. The result was to move closer to good medical care when things started to get on the right track. I take Hydroxychloroquine which help the fatique a bit. What really made a difference for me was taking B2 which was prescribed for me. That made a difference in my case. B2 is necessary for the breakdown of proteins, fats and carbohydrates but need to replenished every day. For me this was effective but “your mileage my vary”. The good news is that its not too expensive and you can get it over the counter so not a great effort to try it. Also not economically a big deal if it doesnt work. Good luck.

Hi Lioness,

Welcome. I'm fairly new to this too.

The Lupus UK page below has clips I watched with family - I think these were a game changer.

lupusuk.org.uk/family-and-f...

I also found some 'Lupus Foundation of America' information helpful in terms of helping me to manage fatigue and communicate with loved ones. If you haven't already signed up, I would recommend 'Take Charge' - free weekly education email series. The first few weeks I found particularly good:

lupus.org/resources/take-ch...

Some their webinars also helped. To see past series, where can watch episodes free, on demand scroll down (quite a long way) on:

lupus.org/resources/lupus-t...

I also found helpful a YouTube clip by Dr Donald Thomas:

Lupus & You: Manage Your Stress With Lupus - Part Three - Stress and Lupus

On Amazon I got a second hand copy of his book 'Lupus Encyclopaedia' for £20

Another great YouTube clip, maybe on a slightly different subject, by Dr Kaul, St Georges, London is

How Key Lupus Drugs Work - Lupus Europe Convention 2021

It helped me understand what underpins disease activity

Sorry I have not worked out how to link to YouTube clips, but if you 'copy and paste' the titles, in bold, into Google it should work.

Take care xx

Fatigue is one of the hardest and most depressing parts of most autoimmune diseases. You should definitely bring the issue up to your doctors. Be specific about what worsens, your sleep patterns, the quality of the fatigue.

Some doctors prescribe stimulants for both lupus and MS fatigue. I take Adderal now to help with a specific fatigue/ light-headedness related to autonomic dysfunction. I just started it about a month ago and no side effects yet.

Maybe there will be forum members who have tried it. You could also try just researching on internet lupus and stimulants for fatigue.

Really feeling for you. I will never forget the heaviness of the fatigue when I was younger. It is life-sapping.

Hoping something helps you,

xx k

Hi Lioness, great name! Most of us on this forum are all-too-familiar with the level of fatigue you are describing. I can only imagine what it’s like for you to have a four-year-old as well!

I really struggle to find things that help. Sometimes fresh air helps, sometimes music helps, but often nothing works at all. Sometimes I’m so desperate I gorge myself on chocolate or sugar, thinking it will pick me up, but sometimes not even that makes any difference.

So then I’m left with listening to my body and cutting myself some mental slack for not being able to work as fast or as hard as everyone else, for not being able to do everything I wanted to do, and for not being the energetic kind of person I want to be. Not easy—it’s a work in progress!

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