Does anyone get so tired they sleep for weeks ? I do and get so depressed as there is no quality of life ....

[JJKANE]

[fabwheelie]

I'm so tired I could sleep for weeks but I try not to "allow myself" because as you say there is no quality of life.

Instead I tend to sleep most mornings but push myself to be up and out of bed before lunch, and then try to achieve something in my afternoons. I've accepted that I need at least 10-12 hours sleep most days, and I allow myself a few days a month as "duvet days" to sleep as long as I feel I need, without pushing myself - allthough I try to limit the staying in bed "all day" to just once a week max. I try to do some exercise each week (swimming works for me - some weeks I go more often than others) as that helps me

Depression can come along for genuine reasons eg with coping with having lupus and the limits it puts on you, but also can be just another symptom of Lupus (ie no real reason triggers it). Don't be affraid to ask GP for help, our mental health is as important as physical health, and some people with Lupus do need anti- depressants

[JJKANE in reply to fabwheelie]

Thanks for the reply.. yes I am on duloxetine. I do as you do and try to achieve something , but if I take a couple of hours with a friend say for a coffee and a chat it puts me in bed for 2 days ...... I too have duvet days and this weekend has been one long one ... I think I am hibernating . I read a lot and am able to laugh at myself , but when it hits hard and its just me and the bed .... I think what is this all about ?

[1963]

hi everyone, im glad you asked that question, i am like that,i sleep 12 hours,if left i wouldnt get up at all ,ive have sle/aps & raynauds, since 1979, and alot of other stuff inbetween,fits,pe, ect, meds are keeping me controlled at last, ive always been very tired, i cant plan anything,and it drives me mad, i feel like i havent got a life ,i too laugh at myself,if i didnt i would cry. i see my consultant (or one of the drs) and they say" your always tired"which is no help, and i find it annoying and belittling, feel they dont know what its like,when there is no quality of life. i cant remember what it feels like to be norm, im not complaining,far from it,ive got a great consultant," top man" but very busy,and brill gp, who understands how hard it is,coping with everything,the above,pain & tiredness.i just want to hide away,keep warm & sleep. sorry about. spelling. .from one sleepy head to others

[JJKANE]

You have just summed up my life in a nutshell ...... My world has shrunk to my bed room .... My GP is fantastic but there is nothing he can do apart from keep me pain free or at least try ... He is the best listener ever .... But still I am tired.. I am naturally a happy person and I do hide my pain but I cry at night when no one knows , I mourn for the old me and the loss of being part of a community .

[esky]

Hi

I could sleep 24/7 if left so you are not alone. I have 3 young children (between 10 and 4). When i get up with them on school mornings it is dreadful. I have no energy whatsoever - I find it really hard having the energy to help them get ready and get to school. And I will be honest Monday - Friday I try to go back to bed even if I dont sleep for at least 2-3 hours. If i dont i cant move or function. My mum often calls me the walking zombie lol. Weekends are hard - but with the help of my family i manage. Believe it or not i have been ordered to go up to my mum and dads bed to rest while they watch the children!! I try as much as i can to do as much for myself and my children - sle willing - sometimes sle wins.

I am a shadow of my pre sle self. But i have come to terms that i have to listen to my body otherwise it stops completely and then i am bed ridden. I feel like i spend my life in bed - but what can i do?

You are not alone in feeling this way. I hope i helped in some way. dont beat yourself up. And dont let the lupus grind u down. We all have good days and bad days.

Take care

Lupie hugs

Esky xx

[JJKANE]

Thank you Esky , having 3 children would kill me so I applaud you ! I have one and feel guilty lupus takes me away from him xxx I pray we all stay strong

[esky in reply to JJKANE]

Anytime hun. We make each other stronger. Esky xx

[overnighthearingloss]

I have had my fair share of such periods. I find its best to plan ahead so that when these periods hit you can just rest a lot more. When I am in a better period I tend to ensure the freezer is filled up and stockpile longer lasting foodstuffs.

Its difficult to explain the degree of exhaustion that hits, to someone who has never experienced it.

It may be worth your GP ordering some bloods to see if anything obvious shows up that

can be fixed. Any infection can cause havoc when we are kept immunosuppressed.

Funny isnt it when top of the list of priorities is the ability to take a rest.

[JJKANE]

Good idea about freezer ;0)

I have sinus infection so body gone crazy .... Hence sleeping for a week !

[Tigerlily4]

Yes

[Zoeblu]

Hi all can I ask what meds you are on? In was diagnosed last June and am on hydrox..., steroids and thyroxine for an underactive thyroid. I've been trying to help control flares by following an anti inflammatory diet. It's helped a bit, but I'm flaring now and the exhaustion is debilating. I have 2 young kids and work 22.5 hours a week. I'm a shadow of myself and like you feel guilty about being a poor wife and mother.

I've decided to try immune suppressants in the hope it will help rid me of these horrible symptoms! Are any of you on these drugs?

[MrsMouseSJ]

Hi JJKane. Much of the last 8 years of my life has ressembled what you describe - total wipe-out after even very minimal amounts of activity and a largely housebound existence. I was originally diagnosed with Chronic Fatigue Syndrome/M.E. and this 'post-exertional malaise' is a hallmark of that condition so, whilst hating it, I accepted it. I have now been (re?)diagnosed with Hughes Syndrome and atypical Lupus and so I joined this online community (and the Hughes Syndrome one) and have asked about others' experience of fatigue (a ridiculous label for what I, you and others experience, really!). It seems that there is a range of functional ability but I am still not clear whether the extent of my fatigue and post-exertional malaise (which includes a range of unpleasant symptoms) is very common to Lupus (and/or Hughes). I know that Fibromyalgia can co-exist with Lupus, so I wonder if M.E. can too (or, at least, the bit of M.E. which causes the 'fatigue') and that it has simply not yet been recognised/proven. Anyhow, the long and short of all this is that I continue to use techniques recommended by leading M.E. researchers/doctors to help manage my fatigue, symptoms and help extend my range of ability. If you are interested, there is information on Action for M.E.s website and I have also become very interested in Professor Nancy Klimas' work on M.E., exercise and the use of heart rate monitors. My best wishes to you.

[JJKANE]

Thank you so much for this .....I am mainly bed bound and have been for 2 years ... I am loosing weight and every thing hurts , I have ME and FM and lupus ( they think)!due to malar rash and other odd rashes .... I am getting so fed up of sleeping .... But the little exercise I do puts me right back in bed .