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Nixxie
07-19-2011, 05:09 AM
Does anyone have any good tips or hints about winning the battle against fatigue?? I am always tired and it is killing me.
Even with a full nights sleep, i wake up exhausted.

I have to take amitriptyline to stay asleep all night to begin with (I have a major issue with broken sleep) and then theres the pain to deal with first thing in the morning, most mornings I just do not cope. Being tired as well as in pain is not a great way to start the day!!

So hints for fighting fatigue please!! (and please dont say hot milk and a bath - thats all my GP ever says and I dont have a bath!! :( )

Manderson
07-19-2011, 05:15 AM
I gots nuttin' Nixxie. Some days I feel okay but most days I just cannot get up. Two days a week I have the early shift so I am forced to get up and function. On the days when I work late and don't have to go in until afternoon, I could spend hours in bed in the morning but I force myself up anyway. I just need more sleep lately.

Elo
07-19-2011, 05:17 AM
Well, I've found that fatigue is a b*tch. I mean, seriously. But they're also a b*tch in a fight, so all you have to do is jump on its back, pin it down, and sit on it's head. It helps if you threaten to fart on them - if you're really really pissed off at fatigue, screaming " STOP IT!!! I WILL PEE ON YOUR HEAD!!!" -and meaning it- does help as well.

*sigh*
if only we could actually beat up fatigue. I know I would give it one hell of a pummeling.

I'm sorry, I can't really help :( Most of the time when I get tired and have to keep pushing myself, I get loopy. (hehe... lupie...loopy...get it? Nevermind)
Ehem. But no, I get really really slap happy and practically tipsy. It doesn't really help people see me seriously, but it DOES help to keep things interesting.

Peridot20_Gem
07-19-2011, 05:22 AM
Nikki,

Can't help you mate and i've never been an idol person and i woke at 10am this morning it's now 1-20pm and still need to get dressed....
everything lately is just one tireing effort as alot of member's know and sleep is never enough for we.

lovedbyHim
07-19-2011, 05:27 AM
Does anyone have any good tips or hints about winning the battle against fatigue?? I am always tired and it is killing me.
Even with a full nights sleep, i wake up exhausted.

I have to take amitriptyline to stay asleep all night to begin with (I have a major issue with broken sleep) and then theres the pain to deal with first thing in the morning, most mornings I just do not cope. Being tired as well as in pain is not a great way to start the day!!

So hints for fighting fatigue please!! (and please dont say hot milk and a bath - thats all my GP ever says and I dont have a bath!! :( )


Oh Sweet Girl, I cried yesterday as I have been falling asleep at the wheel for sometime now and today I must drive over 150 miles to see my clients. I went to bed at around 8 PM and here I was sleeping as my boyfriend drove to work this AM. I dont know many of us who sleep well, it's part of the lupus fibro hell my doc told me.

Im eating right now and taking suppliments and still it is impossible to get enough sleep. Bless you dear as I soooo hear you.

Nixxie
07-19-2011, 06:26 AM
Which suppliments do you take?

It must be so scary falling asleep at the wheel. Is there not anyone to drive with you or any other way for you to get about? You take care ok!? xxx

Oh Elo I too wish we could physically beat up fatigue...although I would probably lose that battle too!!
I have to gte up at 7am every weekday morning to get the kids to school. Although I never get out of bed at 7. I snooze my alarm until finally at 7.45-8am the hubby comes and shouts at me! He does most of the getting the kids ready bless him but he cannot do girls hair yet (he is learning!) so I have to get up and do it. Which most mornings is HELL!
My fatigue is just awful right now. I look like death most days, big horrid bags under my eyes, I am pale and can never ever seem to get enough sleep! Recently, most afternoons I am falling asleep on the sofa or if I have to be somewhere, I am finding myself overly emotional and crying because I am too tired to go. My social life is non-existant now due to me constantly cancelling on people. Eventually they give up asking.

chikititalinda
07-19-2011, 07:11 AM
Im in the same boat, I wish there was a way to get energy levels up. Even with all the vitamins I take, I still can't sleep and am tired all the time. I spoke to my rheumy and he suggested a sleep study which I've scheduled for next month. Ill let you guys know how it goes.

Corella
07-19-2011, 07:20 AM
Ladies, dont laugh but I fell asleep on the toilet at work yesterday, it must have only been about 5 or ten mins but my bottom is so sore from the toilet seat (I am serious), that is my exhaustion at the moment. You know when you dream of water/food when you are hungry or thirsty? well when I am exhausted which is most of the time, I have vivid dreams of my bed - seriously, I dream of a motorised bed coming to get me from work.

I feel better when I have woken up but find it hard to get up telling myself that 10 mins more will make all the difference but the tiredness is like an insatiable hunger, it doesnt ever go away.

So confess, please tell me I am not the only one who has fallen asleep on the toilet.

lizbond36
07-19-2011, 07:39 AM
We all deal with this, I have heard Lupus need it 12 hour beauty sleep LOL this morning I woke up at 3:30 AM and I was dead tried but can't fell back to sleep. This is every day, Corella my funny story is I was eating my checken salad and I feel asleep and my face went into my plate. LOL. But thanks to Lupus you will fall alseep anywhere at any time. Sadly enough :-(

Hugs
Liz

Peridot20_Gem
07-19-2011, 09:36 AM
Ladies, dont laugh but I fell asleep on the toilet at work yesterday, it must have only been about 5 or ten mins but my bottom is so sore from the toilet seat (I am serious), that is my exhaustion at the moment. You know when you dream of water/food when you are hungry or thirsty? well when I am exhausted which is most of the time, I have vivid dreams of my bed - seriously, I dream of a motorised bed coming to get me from work.

I feel better when I have woken up but find it hard to get up telling myself that 10 mins more will make all the difference but the tiredness is like an insatiable hunger, it doesnt ever go away.

So confess, please tell me I am not the only one who has fallen asleep on the toilet.Sam,

At least yours was just 10mins..i've done an all night job when i've been in severe pain bleeding and my hubby as found me with my head up against the wall just born tired out with the lot.

It dow matter how much you eat and wheather it's good foods and drink it just wow move and it sticks you in a form of an idol mode and it's terrible to shake off.

rob
07-19-2011, 09:52 AM
Well, I've found that fatigue is a b*tch. I mean, seriously. But they're also a b*tch in a fight, so all you have to do is jump on its back, pin it down, and sit on it's head. It helps if you threaten to fart on them - if you're really really pissed off at fatigue, screaming " STOP IT!!! I WILL PEE ON YOUR HEAD!!!" -and meaning it- does help as well.

*sigh*
if only we could actually beat up fatigue. I know I would give it one hell of a pummeling.

I'm sorry, I can't really help :( Most of the time when I get tired and have to keep pushing myself, I get loopy. (hehe... lupie...loopy...get it? Nevermind)
Ehem. But no, I get really really slap happy and practically tipsy. It doesn't really help people see me seriously, but it DOES help to keep things interesting.

You really need to put a warning at the beginning of your posts. Something like this-

Caution-The following may induce an involuntary laugh that when combined with a mouthfull of your favorite beverage, will make a mess all over your keyboard.

Threaten to fart on them, I love it!

rob
07-19-2011, 09:57 AM
In regards to the fatigue, I've been living with SLE "officially" for over 7 years now, and unfortunately, I've never found anything to help me get through the fatigue. I no longer work, and I'm on disability, so when it happens, it's not like I have anything to do. I just try to sleep through it, or push throught it by doing some simple activity. I really feel for the folks here who are still soldiering on by working and staying with their job. Fatigue sucks.

Rob

Linda From Australia
07-19-2011, 10:04 AM
Does anyone have any good tips or hints about winning the battle against fatigue?? ..... (I have a major issue with broken sleep)

So hints for fighting fatigue please!! (and please dont say hot milk and a bath - thats all my GP ever says and I dont have a bath!! :( )

I was going to say to have a hot shower if you canít sleep, but I wonít.
I was going to say to take a nap when you feel tired, but I wonít.
I was going to say to do some exercise which is good for your body, but I wonít.
I was going to say to make sure you eat a healthy diet, but I wonít.
I was going to say to read a really boring book that sends you to sleep, but i wonít.

But what I will say is, fatigue is something you will learn to live with, rest when you can, try to live a healthy lifestyle, and try not to be too upset when you cannot function. Instead of thinking about how you are mucking up, think more about what you can do to fix things up. If you constantly get upset about how bad things are, the worse you will feel.

lovedbyHim
07-19-2011, 01:03 PM
I was going to say to have a hot shower if you canít sleep, but I wonít.
I was going to say to take a nap when you feel tired, but I wonít.
I was going to say to do some exercise which is good for your body, but I wonít.
I was going to say to make sure you eat a healthy diet, but I wonít.
I was going to say to read a really boring book that sends you to sleep, but i wonít.

But what I will say is, fatigue is something you will learn to live with, rest when you can, try to live a healthy lifestyle, and try not to be too upset when you cannot function. Instead of thinking about how you are mucking up, think more about what you can do to fix things up. If you constantly get upset about how bad things are, the worse you will feel.



I do believe that waking each day and living it to the fullest is vital. I also believe in being grateful for the little things and celebrating life in spite of circumstances is important, however, if that fatigue is lead blanket fatigue, it destoys your moments. I love going to church and busting out laughing with my good friends, but sometimes I can't get there because I can't function. We all want the miracle to come and allow us to function at least minimally. I want to keep my job so I can keep my home and do what I am good at.I help broken sickly people. If I can't drive I lose my job as it is "Mobile" psychiatric rehabilitation. I have 11 yrs in this job and know I can not function at this rate very much longer. I'm not upset when I can't function, I'm asleep behind the wheel. I'm only upset when I'm trying not to kill myself or someone else. Now if I was angry at them that would be different (grin).

debbie-b
07-19-2011, 01:17 PM
I am surprised, that all of you combine fatigue and sleepiness. When I am fatigued, I am not tired or sleepy, I am dragging, I can barely put one foot in front of the other. Sorry Rob, but I am going to have to use your phrase, it feels like I am wearing a lead blanket, that is slowing and dragging me down.
Last night, it was so bad that I begged my coworker to work for me, 'till 10pm and I go home at 7pm, that is when she was supposed to get off. I was so fatigued, I could barely drive, but I was not tired. When I got home, I layed down in my easy chair, but I couln't sleep, just rest.
When it hits me as bad as it did last night, all I want to do is lay down. I could barely make it to the bathroom in time, because I moved in slow motion.
I envy you guys, I wish I could sleep it off.

Debbie

lovedbyHim
07-19-2011, 01:23 PM
I am surprised, that all of you combine fatigue and sleepiness. When I am fatigued, I am not tired or sleepy, I am dragging, I can barely put one foot in front of the other. Sorry Rob, but I am going to have to use your phrase, it feels like I am wearing a lead blanket, that is slowing and dragging me down.
Last night, it was so bad that I begged my coworker to work for me, 'till 10pm and I go home at 7pm, that is when she was supposed to get off. I was so fatigued, I could barely drive, but I was not tired. When I got home, I layed down in my easy chair, but I couln't sleep, just rest.
When it hits me as bad as it did last night, all I want to do is lay down. I could barely make it to the bathroom in time, because I moved in slow motion.
I envy you guys, I wish I could sleep it off.

Debbie


Honestly Debbie, sometimes i can't sleep. All I can do is lay in a coma-like state and waves of nausea and chills overtake me.I call that, "Hitting the wall" But Sun sickness just puts me out.

debbie-b
07-19-2011, 01:29 PM
Honestly Debbie, sometimes i can't sleep. All I can do is lay in a coma-like state and waves of nausea and chills overtake me.I call that, "Hitting the wall" But Sun sickness just puts me out.

I know, what you mean. I was nauseated, my head hurt, my stomach hurt and my joints, just hurt like heck, I was dizzy and my brain fog was really bad. It looks like I am in a new flare. I don't need that now, that the MTX is finally working.
Ugghh

Debbie

tgal
07-19-2011, 03:07 PM
In regards to the fatigue, I've been living with SLE "officially" for over 7 years now, and unfortunately, I've never found anything to help me get through the fatigue. I no longer work, and I'm on disability, so when it happens, it's not like I have anything to do. I just try to sleep through it, or push throught it by doing some simple activity. I really feel for the folks here who are still soldiering on by working and staying with their job. Fatigue sucks.

Rob

That is what I just did. I was so excited that my friend Linda (you know the one... the Aussie) got up in the middle of the night to talk to me but fatigue had just hit me so hard that we spoke for maybe 10 min and I had to say goodbye and hit my bed. It was so sad because I only received the short version of her trip.

tgal
07-19-2011, 03:10 PM
I am surprised, that all of you combine fatigue and sleepiness. When I am fatigued, I am not tired or sleepy, I am dragging, I can barely put one foot in front of the other. Sorry Rob, but I am going to have to use your phrase, it feels like I am wearing a lead blanket, that is slowing and dragging me down.
Last night, it was so bad that I begged my coworker to work for me, 'till 10pm and I go home at 7pm, that is when she was supposed to get off. I was so fatigued, I could barely drive, but I was not tired. When I got home, I layed down in my easy chair, but I couln't sleep, just rest.
When it hits me as bad as it did last night, all I want to do is lay down. I could barely make it to the bathroom in time, because I moved in slow motion.
I envy you guys, I wish I could sleep it off.

Debbie

I don't really combine them because they are two different things however sometimes I get one with the other. I took a nap because the fatigue has been on me all day and it is even now after I woke up. The nap didn't fix it but I felt the need at the time. There is no sleeping away the fatigue but, for me, there is no energy for anything else so sleep and fatigue are friends for short periods of times. When I have bad fatigue (like now) sometimes I can't sleep at night and am up until 3 or 4 in the morning. I am tired but I can't sleep but in the middle of the day I may take a nap. My sleep patterns get all messed up when my friend fatigue is with me

Linda From Australia
07-19-2011, 03:19 PM
That is what I just did. I was so excited that my friend Linda (you know the one... the Aussie) got up in the middle of the night to talk to me but fatigue had just hit me so hard that we spoke for maybe 10 min and I had to say goodbye and hit my bed. It was so sad because I only received the short version of her trip.

OK OK OK, the truth be told, I was up because I was so fatigued, I couldnít sleep. I didnít actually get up in the middle of the night just to talk to you tgal. But I was up anyway, so I thought I would try to see if I could talk to you. And I did, even if it was just for 10 minutes. Like I said before: If you constantly get upset about how bad things are, the worse you will feel. If things go wrong, I try to turn it around to do something successful. And talking to tgal in the middle of the night, is an awesome successful thing to do.

I was only discussing with tgal in the early hours of this morning ... If I get 2 or 3 solid hours sleep, I feel so refreshed, imagine if I got 8 hours solid sleep, imagine what i could do.

Manderson
07-19-2011, 03:47 PM
I get fatigue without sleepiness. Of course lately I need more sleep (last 6 months or so) so instead of 7 or 8 hrs. I generally try for 9. Last sunday it was almost 12 hrs and I swear I could have taken a nap in the afternoon too. But we're going through a real heat wave here in midwest so I think I can attribute some lethargy to that.

As for fatigue, I can feel it at work coming on. Feet/legs start to feel heavy and dull, then the whole body starts feeling it as well. Words get mixed up, can't write well (can't anyway) or type well. But I'm not sleepy.

Peridot20_Gem
07-19-2011, 04:27 PM
I get fatigue without sleepiness. Of course lately I need more sleep (last 6 months or so) so instead of 7 or 8 hrs. I generally try for 9. Last sunday it was almost 12 hrs and I swear I could have taken a nap in the afternoon too. But we're going through a real heat wave here in midwest so I think I can attribute some lethargy to that.

As for fatigue, I can feel it at work coming on. Feet/legs start to feel heavy and dull, then the whole body starts feeling it as well. Words get mixed up, can't write well (can't anyway) or type well. But I'm not sleepy.Hello Marie.

I hope your keeping fine otherwise.

I get fatigue like yourself without being tied but i've started dropping off badly after teatime, i was tied tonight but have kept myself awake. Oh if you slept for 12hrs last sunday that helped you a great deal, whatever hours i go i never feel no better for it.
I don't like to say this but i feel sorry for you with heat waves...god if it happened here really bad i would'nt know what to do the least bit of heat starts a blister flare.

Marie it really mixes we up mate in more ways than one. xxxx

Manderson
07-19-2011, 06:54 PM
Hey Terry - I am keeping pretty good today. I don't know if it's the heat and humidity but I felt pretty decent yesterday and today. How's about yourself?

I AM HAMSTER! HEAR ME ROAR!

Nixxie
07-20-2011, 06:40 AM
In regards to the fatigue, I've been living with SLE "officially" for over 7 years now, and unfortunately, I've never found anything to help me get through the fatigue. I no longer work, and I'm on disability, so when it happens, it's not like I have anything to do. I just try to sleep through it, or push throught it by doing some simple activity. I really feel for the folks here who are still soldiering on by working and staying with their job. Fatigue sucks.

Rob

I dont "work" officially but I have 3 children under 10 so my days are hard and busy!! I dont think I get 5 mins to myself until the kids are in bed and by that point, its matchsticks in eyes for me! (propping up the lids, not literally sticking them into my eyes....you know what I mean!!)

Nixxie
07-20-2011, 06:48 AM
I am surprised, that all of you combine fatigue and sleepiness. When I am fatigued, I am not tired or sleepy, I am dragging, I can barely put one foot in front of the other. Sorry Rob, but I am going to have to use your phrase, it feels like I am wearing a lead blanket, that is slowing and dragging me down.
Last night, it was so bad that I begged my coworker to work for me, 'till 10pm and I go home at 7pm, that is when she was supposed to get off. I was so fatigued, I could barely drive, but I was not tired. When I got home, I layed down in my easy chair, but I couln't sleep, just rest.
When it hits me as bad as it did last night, all I want to do is lay down. I could barely make it to the bathroom in time, because I moved in slow motion.
I envy you guys, I wish I could sleep it off.

Debbie

Oh I totally hear you with that. I constantly feel like my limbs are all weighed down with lead. Putting one foot in front of the other is a major battle, I literally crawl up my stairs, brushing my teeth is a major chore. I feel like the gravity in my personal space is double everyone around me! But I am also sleepy with it. And unfortunately I cannot "sleep it off" if I sleep in the daytime, I wake up feeling 10 times worse. No amount of sleep refreshes me and nothing I try seems to help.

We all deserve medals for living like this and still be able to smile! :D xx

Nixxie
07-20-2011, 06:52 AM
I was going to say to have a hot shower if you canít sleep, but I wonít.
I was going to say to take a nap when you feel tired, but I wonít.
I was going to say to do some exercise which is good for your body, but I wonít.
I was going to say to make sure you eat a healthy diet, but I wonít.
I was going to say to read a really boring book that sends you to sleep, but i wonít.

But what I will say is, fatigue is something you will learn to live with, rest when you can, try to live a healthy lifestyle, and try not to be too upset when you cannot function. Instead of thinking about how you are mucking up, think more about what you can do to fix things up. If you constantly get upset about how bad things are, the worse you will feel.

Thankyou. :) I do actually read before bed, it really helps me get to sleep. I think I exercise pretty well for someone with my body functions! I do zumba once a week and also use my Wii alot. I also have a healthy diet. (I started WW shortly after my diagnosis in November 2009. I started at 179lbs and am now 136lbs!!) I don't relly get to nap alot because of my children, but also napping makes me feel worse.

I do appreciate you advice so much and you are right, fatigue is something we must accept in our lives and deal with as best we can. xx

Peridot20_Gem
07-20-2011, 01:05 PM
Hey Terry - I am keeping pretty good today. I don't know if it's the heat and humidity but I felt pretty decent yesterday and today. How's about yourself?

I AM HAMSTER! HEAR ME ROAR!Hello Marie,

Nice to hear for a change a member feeling abit better...it's been humid here today and my god it was way to much but it's cooled down now but when i woke this morning my legs was in some pain and my top half of my body cramped, after taking my meds i soon had a 1000mg of paracetamol but i was shaking besides and have'nt got a clue where that came from.

Ste came back from walking bruno and asked me what was up told him, so he made me rest but when i get this bad it dow take the depression long to kick in and the crying series starts again.

All my love Terry xxx