LUPUS UK

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I can't cope with this constant fatigue!

I'm so tired of being tired, it is like torture. There are days were my pain is at a tollerable level but there is never a day that this tiredness eases. I'm so frustrated and so annoyed. Days out with my friends are either cancelled cause I'm too sore or cut short because I need to go home and rest and although they say they understand I can't help but feel I just seem to be making excuse after excuse. Another thing that gets to me is jokes that I'm "lazy" ... Do people honestly think I choose to be like this?

25 Replies

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Could be you need a different medication that suits you to ease and control your symptoms, we all have good periods and bad periods but when the bad ones out-weigh the good and even having plenty of rest isn't helping, maybe its time to discuss other options available with your medical team. We all need to be able to rest so we can enjoy some good days, good luck

Thank u for your reply. Iv been put on a higher dose of medication 4weeks ago but so far no change. Iv gone from being tired and resting to conserve my energy to absolutely exhausted and not feeling any better even after sleeping for hours and taking it easy. Its very frustrating needing to get things done and not having energy.

I had to look twice at this post to see if it was me that had wrote it !!! This is so true for me too. When its not the pain it's the fatigue. And it annoys me when people think that being tired is the same as fatigue! Ahhhhhh the problem is tiredness goes away after sleep or rest fatigue doesn't

If anyone does have solutions for this please share as it is driving me insane. I feel I am lazy myself and think its all in my head but my occupational therapist tells me this is normal and a lot of us fibro suffers think like this. I am just starting a fibro programme with my OT so hopefully I may have some tips soon,

The only thing I have been told so far is to ensure even if you feel ok make sure you rest everyday,,,,,, I am still waiting for a day when I feel ok

I have fibro also, a visit to physio made everything worse, what is the OT going to do to help you, would love to know what the programme is, Hope you have an ok day soon!!!

I am just the same!! I can tolerate the pain but the fatigue is just the worst and because people can't see anything wrong they can't understand why we need to rest is the yawning not a big hint, although my mum told me to go to bed earlier!!!!!!!!!!!! If only that was the answer. I have been on new meds for about a month now and the fatigue is probably the same as before had to change meds for another reason, but the constant pain is subsiding.

We didn't choose to be like this as you say. xx

Thanks so much guys, when all your friends and family are all active and healthy it just makes it so much harder, they can sympathise to a certain degree but they can't fully understand what it is like to live like this. I'm so glad iv discoverd this forum although its horrible that others are feeling like this I'm glad that people on here can fully understand my situation and can relate to how I'm feeling. When you are unwell its hard not to become iscolated xx

I will keep you informed on the programme. I have just started it and at the moment the main focus is on seeing what I am doing on a day to day basis. She said it doesn't matter if I do nothing or I do loads (obviously depending on flares etc) she just needs to see my level of activity or lack of it so she can see where I am going wrong or right and then try and guide me in the right direction. As for the physio that hasn't gone well so far but now starting on general fitness physio next month. I just hope something worse as like you the fatigue drives me insane

That would be great, thanks Zforsyth. Good luck with the programme I really hope it works for you!

Hi Sallyward123,

I remember feeling like this!!!! I wasn't on any meds because I had some eye problems that needed to be addressed before I started them. The one thing that did really help was 3000mg of omega 3 fish oils a day. They really were my saving grace when I was going through the extreme fatigue period. I hope this helps.

Ask for your Vit D levels to be checked. Mine were«14 which is very low and 10000 units of high dose vit d massively helped the fatigue. Prior to that severe fatigue was caused by anaemia which was treated with iron. Its not always the just the lupus if fatigue very severe so do talk to doc to exclude other possible causes x

That was 10000 units a week for 6 weeks of vit d. Now on a maintenance dose of 800 units a day x

6 months not 6 weeks!!!! Arghhh lupus brain give me strength!!!

I feel exactly the same way. I am so glad I found this forum, and there are people on here that are able to express how they feel so much better than I can. It is so isolating when you are struggling, but all those around you are fit, well and full of life.

Here's hoping everyone has a good day soon, in fact two in succession would be lovely x

I agree with you all. The fatigue for me is the worst part of this illness and stops me functioning more than the pain. My St Thomas' lupus consultant says there's nothing more to try until new drugs come on to the market. Was only taking omega 3 2000mg a day for my lupus anticoagulant along with aspirin, will try 3000mg. My Vit D is now low but it was my complaint about more joint aches that got my rheumy to test for vit D deficiency - not helped so far wish we had energy metres attached to us so we and everyone else could see our levels, lol, BUT knowing lupus it wouldn't register then everyone really would just consider us lazy. Off for my siesta xx

Hi All. Oh how I relate to all your comments. Fatigue is probably the biggest problem next to aches and pains. I feel SLE is a very difficult disease because it makes you so anti-social. Having to let people down or simply not up to entertaining visitors etc. makes me feel totally unreliable. Thankfully after all these years my friends know me well enough to understand what is going on and an invite is usually accompanied by "but don't worry if you can't make it" which is very comforting. My only way of coping with fatigue is REST - pure and simple. If I am working around the house for instance I will do a job, then sit and read for half an hour and start again when my strength returns. I of course am one of the lucky ones being older and retired. This is not so easy for those of you with jobs and young families and my heart goes out to you all. Take one day at a time and I hope today is one of your good ones. Gabs.

Agree 100% - the fatigue drives me absolutely crazy... If I'm not in too much pain I'm too tired... and that's without all the other stuff!!! The only way I can do the things I want to do is to really pace myself, otherwise I can end up making a bad day much worse. Hope you get some relief soon

Hi All this is the same for me i am seeing my GP tomorrow i m so depressed and fed up of feeling so ill all the time , there seems to be no let up, i have been out of hospital 3 weeks now and since then i just cant seem to cope with anything, so tearful , tired and stressed , and seem to peeing everyone off in the household as they dont understand why i am so tired and no energy to do anything , Life just seems in possible at times but i just have to let the world go by and hope tomorrow is a better day!!

take care x

Totally agree also - and the frustrating thing is the fatigue is so changeable. On one day I can get through the day with lots of pacing, but on another it is a completely washed out kind of fatigue where even the mildest of household jobs have to wait. I must admit starting the methotrexate has helped with this but everything still has to be paced or as I say compromises made to save energy. For the first time in two years I am going on to an outdoor concert with my husband tomorrow night (Paloma Faith) but instead of just taking it for granted that all with be fine - I'm thinking ahead to how I can save energy that day to enable me to attend. I have my Lupus support group meeting on Saturday too. So I guess the plan will be to go to that but not stay too late so I can rest for a few hours before the concert. Luckily it is an outdoor venue where I can sit at the back on a rug/chair and just enjoy the music. It seems such a long time ago now that I could just do activities freely without every step being planned to prevent fatigue/flare up - it is now becoming a way of life to pace/plan ahead/make a judgment on whether it will be detrimental to my health etc. On the other side though - I thought yesterday I've only got one life and "We have to learn how to dance in the rain". So totally identify with your post as I guess most people here do too - thanks for raising it. xx

Thanks guys for telling me about ur own personal struggle with this horrible symtom of SLE. Although it doesn't make it any easier it is reasurring that I'm not going throigh rgis on my owm...which is hard to remember when you are surrounded by energy filled healthy people. I think the idea of an energy meter would be brill. It would be great to have something to show people to make them realise rather than just jumping to their own conclusions of "lazyness" that word drives me insane, lazy is the most unfair thing to be called.

Is it possible this is caused by overactive thyroid ? My recent extreme, ridiculous fatigue was

the first symptom of Ov. Thyr., and I've had arthritis, recognised + treated, for years.

Thyroid problems are pretty common in females, & diagnosed from a simple blood test.

Once the Thyroxine medication was balanced, the thyroid regained normality, my leg

muscles worked again & energy levels rose.

I have no idea if this will help anyone but I thought I would put it up anyway. I too find the fatigue much more difficult to cope with than any amount of pain I have been in. I am currently taking methotrexate, sulfasalazine, prednisolone, hydroxychloroquine. I was told I could try Tocilizumab (Rituximab and Adalimumab have not helped at all) as it is definitely supposed to reduce inflammation. I had my first infusion in January and within days I felt like a new person. The inflammation and pain in my joints had almost gone (like most people I had no idea how much pain I had been in until it wasn't there any more) and it also reduced my fatigue dramatically. I started to reduce my steroids as was suggested (I was only on 7mg) and actually got off them by the end of May but the pain returned and I started to feel tiredness again so have put them back up to 5mg and this seems to keep me stable. I visited my Rheumatologist in March and for the first time ever all my bloods were NORMAL and she was as pleased as I was. I realise that everybody reacts differently to the medications but I thought I would share my experience. I told the nurses on the Day Unit how good it had been for me and they confirmed that several other people had the same experience as me. Anyway good luck to everyone xx

Hi Sally, sorry to see you are having a rough time of it right now but I will tell you how I cope with the fatigue and maybe you can take a little of what all of us, your fellow lupies say and try different things and see what works for you. Firstly before I get out of bed I think about what my body is telling me as if I am feeling really rough my clothes will come to the bathroom with me on that trip to save me going back to the bedroom to change later, every little ounce of conserved energy helps. I will wash and change and go down stairs leaving my dressing gown in the bathroom - it can wait to go in the bedroom until later I might not like it there but it's not the end of the world! Make coffee and get pills out standing in the same place and reach over to taps, put anything I need to go to the table on a tray so I only make one trip with breakfast, then afterward one trip back, I use a large mug and have one coffee instead of going back and making another, little things like these make a big difference. I will plan my day from my breakfast table literally around my naps if it is a really bad day, luckily I have a downstairs toilet so don't need to keep using the stairs. My body says sleep I have to do it so I do, it is something that I didn't like to start with but it is a fact of life now and others have accepted it too. I feel much better if I power nap little and often I cope so much better. My big shopping gets done online and when I go out on a bus or train if I have to ask someone to get up so I can sit down then so be it often people give me funny looks but I just say I have disabilities and need to sit down normally someone will get up, I have had a few who won't but it does not happen often. Since I have been on Methotrexate my fatigue has improved a lot and my steroids have been reduced to 15mg now too.

So good luck and I hope that you manage to work your drugs out and the fatigue gets easier to manage

Madmagz x

Reading this post is bitter sweet for me

Sweet as I often feel like my symptoms are in my head so reading about other people going through it make me feel less alone a

And bitter because I wouldn’t wish it on anyone.

I found this article that talked about being sure to work out to help with fatigue... even playing wii fit!! lupuscorner.com/fatigue-and...

Wow! I've just seen your post and it may as well have been the exact of what I've just tried to put into words in my post moments ago. People that don not suffer will never understand, how can they. The fatigue,the pain the not being able to have what's classed as a normal life. I am glad to have recently joined this forum to get advise and to talk to someone who definitely knows what I'm going through. Think I'm going to be here a lot, but even this wouldn't be possible without ipad predictions. Good luck Sally123