Is the constant tiredness an ongoing part of lupus or does that to have its ups and downs

[lupydragon]

Diganosed last June with Lupus, Have been of work for 2 weeks and been signed off for another two weeks due to the constant tiredness / flare ups, and was wondering if the tiredness is a constant thing or veariable like the flare ups

[Stace1]

Iv only been diagnosed in the last few months but I also feel tired no matter how much I sleep, like today I have got out of bed once to use the toilet,

[AlisonM]

I've been diagnosed for 5 years now and I find it goes in peaks n troughs. And it can't always be matched with when I've done too much. Unfortunately I just need to sleep n it does get a bit better. I'm maybe never 100% not fatigued but I now count a wee 10% fatigued as normal!! its hard, very frustrating, and something that we can't control.

I've learned to cope better and be more sensible in what I do and when, which does help. I try to go to work even when quite fatigued but work colleagues can tell when I'm exhausted.

Good luck, keep smiling n sleeping and don't do too much when you feel better as being fatigued again is worse feeling (mentally) than the 1st time!!

Ali xx

[gertie]

On average I am fatigued 5 days out of 7...I have been diagnosed for 7 years. It is really frustrating but nothing seems to work for me. I eat healthy food, I take vitamins, meditate and do yoga but I cant get rid of the exhaustion. Sometimes I wonder if the medication works or even does more harm than good or if it something else besides the Lupus is causing it. I really wish there was a medication to banish the fatigue!

[Lucy86]

Hi

I was diagnosed last year with sle and I find that I get tired very easily and quickly but as others have said there are up and down days and it is about listening to your body and knowing your limits and it is vital to rest if you have a flare up.

Hope things settle down for yo and keep your chinn up

Lucy

[Corrosion]

Hi Lupydragon,

I know how you are feeling. The hardest thing I have had to deal with is the constant tiredness and pain. I was just managing to go to work and literally not do anything else.

My rheumatologist recommended fish oils and they have been a great help (omega 3, 1000mg, 3 times a day).

I hope you feel better.

[tiredmum]

Hi there,

i can totally sympathise, i didn't realise you could feel as tired as we do.

However much you sleep, I still wake up feeling tired, the effort to get out of bed is unbelievable.

I quite often reach the point where I feel sick and get the shakes because I am so tired. I have even found myself sat on the floor without realising how i got there.

until you have experienced it I think it is very hard for someone else to fully understand.

good luck

[Blueberry]

Yeah! I read something on the net somewhere comparing chronic fatigue syndrome to Lupus, and they were saying CFS was worse because you're exhausted all the time and I thought 'hang on a minute!!!??'...

Mine has peaks and troughs though to be honest - I've been very, very fatigued lately, but the last two days I have managed not to fall asleep on the sofa by 3pm or sit fighting it and unable to do anything else. I overdid it a bit yesterday so I'm back to square one today....it really is maddening. And no one really seems to understand either, they just skit me for trying to have a lie in or being too tired to go out and see them etc :\

[Jaxqueline]

I am tired during, before and after a flare up but do have periods of normality when I tend to go hyper and fit everything in. I am told that I overdo it though, but to me it is a window of opportunity and I want to make the most of my "well time". Take care.

[JSue]

I have frequent bouts of fatigue. If I am able to expend more energy than usual, I generally pay for it the next day with myalgia and extreme exhaustion. Best to pace yourself, but easier said than done. This illness changed my life. Now I have to prioritise tasks and responsibilities far more than before. Fun is a necessity thought, so I include that in my to do list -- as a responsibility to myself.

[LaughItUp]

Yes, defo need to include fun in our schedules

Am glad to hear that a rheumatologist has suggested a more natural remedy such as fish oils. flaxseed oil helps with my joints.

[Maya23]

I was diagnosed with Lupus 2 years ago, and I had lived with a diagnosis of ME for 6 years before that. I find the fatigue the most difficult part of the illness, it 's sometimes so bone crushing and it's so hard to do anything at all. I find it comes and goes (highs and lows that are mentioned above) with the times that I have a bit of energy I find myself trying to catch up with the things that I haven't been able to do! It's hard to pace myself so that I don't go crazy with all the things I want to do at those times, but I've learned the hard way to let go of a lot of unrealistic expectations and to say no to a lot of other life pressures. It's a good idea to have fun when you have the energy and to rest when tired. It sounds obvious but I'm sure you know how hard it is to get a balance! Be gentle on yourself and kind too.

[lupydragon]

Hi thanks to all above who have answered my question, guess its just a question of pacing your self, definatly will include some sort of fun elliment into the good days, and not be so hard on myself for not doing some of the little things that always seem to need doing and to concentrate on the main things, so what if there is bit more dust !, though saying that, that's the one thing my husband does do, and thats most of hoovering and polishing, I had no idea you could feel so tired for not doing anything, Roll on the better days, for all of us

[Elle-26]

Im sorry to say it is .. Its one of the worse symptoms. I believe the Fatigue causes depression through frustration of unable to do anything .. I have a young son and most days I cant go out with him, the guilt hits and the hatred of the disease doing this to me. I dont think any of the medical staff understand properly and what the impact on our lives is with just the Fatigue itself. Im constantly telling my Consultant about the Fatigue .. I can just about handle everything else, including losing my hair, but the fatigue Ive never been able to manage.

[Shorthouse]

For me it varies .afternoons always weary so always slow down.listen to my body(never push myself)works for me .no sugar dairy wheat.so much better,than I was.