Sjogrens World Forums

Hi all,

I started this topic on the old board format and I thought it would be fun to start it again since it got such a huge reaction by everyone!

So...how do you explain the type of fatigue that so many of us feel?

I've tried in the past to describe it to others, but I'm just not able to get the point across to those who don't experience it...its much much more than just being tired. And its not a sleepy tired (well not always)...its a deep in the bones fatigue.

It's a "if I take another step I may fall down" fatigue......Its a "If I don't hang on to this shopping cart, I'm going to land on my face kind of tired".....its like "someone or something has drained the last bit of energy I have left and I immediately need to sit/lay/rest wherever I am or I truly feel like I wont make it another second in the upright position fatigue".   :)

How do you try to explain it? Or maybe you have just given up like me....lol!

I feel like my bones have been magnetized and a low grade magnet is pulling every part of me down all the time.  Every step is like pulling away from the force, and I sometimes feel like I don't have it in me to pull through another step.

The fatigue is phenominal- that is how I described it to my doctor.  I told her there is absolutely NO words to describe the fatigue that I feel.

It's as if I am trying to walk forward in a horrific wind tunnel - every step forward is a struggle and I keep getting pushed backwards.

Thanks for adding this post- I look forward to seeing the replies!

I can be sitting up one minute & the next I'm in a dead sleep & couldn't tell you what went on.

Great thread, Lynn.  I'd say that it's not 'sleepy tired' but 'fall unconscious right here' tired.

How about 'wading through treacle' to describe trying to walk?  Or it's as if the very marrow of my bones is weary and aching? 

Take care - Chickpea

Someone pulled my plug out?   My batteries just died ?

I also like the "walking through treacle"

I have explained it as it feels as if I have weights tied to my body and I have to walk around (and keep myself standing even) with these weights.  If I give in to the weights, I will just collapse.

I can feel the energy running out of me.  Some days I'm good but others I too feel like I'm running off of batteries.  Discount batteries that don't last very long.  ;)

Lynnmaria,

Your description is exactly how I explain my fatigue to the doctors.

Hello Dunhams and Tomsmom, and welcome both of you to Sjogren's World.

How unfortunate that the first thing you find to have in common with the rest of us is total, debilitating, frustrating fatigue, but how fortunate that you found us, and found a place where people understand when you say, suddenly dead asleep, or running on discount batteries.

I hope as you read more, you'll find other things in common, and not all of them associated with this insidious disease.

Dunhams and Tomsmom!

Welcome to Sjogrens World! I hope you find this site useful for whatever information you need as well as to find support and friendship!


Keep the descriptions coming...so far they are great and some make me laugh!  :D

Like my signature says....."If we didn't laugh...we would all go insane! How true is that??

The fatigue feels like I can't keep myself upright.  Like a cartoon where the head comes off, then the arms and legs and trunk and it all falls over.  I can be sitting on the ottoman in the living room and without anything to support me I usually end up falling over because I'm too tired to keep sitting up.  Sometimes I will even lay my head on the arm of stuffed living room chair cause it's just too much to hold my head up.


I've had some good days though!  On those days I bound up the stairs.  The other day I was listening to some music and I started to dance.  I couldn't believe I was actually moving like that.  Well, OK I did pay for it the next day! lol  My back and legs hurt for sure, but it was fun.

Terri

I call it "Do I have the flu?-tired". Basically it's almost like I need to "refuel" as I call it or I just can't "function" anymore. It's amazing how fast I can fall asleep and sleep a solid 2 hr nap and still not feel refreshed! But at least knowing it's sjogrens and that you all get it too has really helped me accept it and not wonder what the heck is wrong1--Take Care All-Net

I feel like I have the flu when my muscles are hurting and I'm exhausted.  I forgot about that.  I said to my husband the other day, after I over did it on the weekend, that I felt like I had a really bad case of the flu.

Terri

I always call it "hitting the brick wall".  When it hits, it slaps me down and lays me low just like as if I had  run into a brick wall.  There is no more sitting up or even staying awake.  My body has turned off and will not continue until I lay down even if it is for a short nap.  This truly becomes power napping.  Usually once I get up I can at least function again for the rest of the day. 

The crazy part is this never seems to happen at bedtime when I need to go to sleep and am more than willing to shut down the systems.  It always seems to want  to happen in the afternoon when I still have things to do.  I have learned if I am away from home to stop the activity and head home when I begin to feel tired. I get this overwhelming thought in my head saying go home, go home.   I try to not push it to the point of collapse. 

Most people who have not actually have this happen to them do not really get what you are saying.  But if you mention this to someone who has you can see the animation on their face as they explain their experience with "the wall".   It is a truly weird experience and was one of the first symptoms that brought me to the doctor. 

Lynnmarie,

Funny you should post this topic . . . I was going to post something about it today too!!   ;D

Not to steal your thread . . but, I was wondering what people do when they are hit with the "I can't stay awake a second longer" fatigue when they are away from home.  ????

~~~~yawn~~~~~~
Bucky   ;)

This is accurate, Lynnmarie: "If I don't hang on to this shopping cart, I'm going to land on my face kind of tired" ;) ;)

I usually feel like this when fatigue comes, all I can think about is to lie down - somewhere, anywhere where it's flat, right down on the floor in the supermarket or in the middle of a street...

I feel as if half the blood has been drained from my body and I'm trying to move through wet cement.  My head feels as if it's in a vacuum and I feel like I'm feverish and coming down with the flu.

Bucky,

If I am able to go home asap, I do.....like if I am in a store or something! If I cant go home because I'm at work or somewhere in the middle of something....I keep pushing (which I know isn't good)...but sometimes if I can just sit down for a few minutes and rest I can go on for a little longer.

I also take medication because of the overwhelming fatigue. I have taken  provigil for a quite a while now and it is my lifesaver as far as being able to continue to work full time.  :)

Everyone's description describes my fatigue but what's more in my case is that I find myself shutting down mentally as well.I stop engaging,I stop caring and I usually don't have to say anything because it must be written all over my face because whoever I'm with will say they need to get me home or can you make it to the car and I'll be right there.I may not even take a nap when I get home but I need to rest and recharge.

Wow , its so long since I have been on this site. I was feeling pretty good with the hydroxychlorquine, water aerobics that I felt like I had this thing whipped. WRONG I guess you never have it whipped.
I thought I was never going to get enough water. Working in the yard and the heat of Florida, make a long story short, I was feeling fatigue for a week and that day did me in, chills but my body was hot, and I went to bed thinking I was going to die and never wake up. Sad thing is as bad as I felt I didn't care if I did die and never woke up. Today is better, going to stay out of the heat and take it easy. Hips hurt, knees hurt, and I may go see my rheumy doc. I have a slight rash on chest, guess its heat rash... any commnets for you guys would be appreciated :'(

I just want to thank everyone for this forum and for the conversations I have read for the last month. Can you believe I laughed reading some of this conversation on fatigue, because Im relieved that Im not the only one that feels like this. when I have had a really hard day at work ( wanting nothing more then to just lay on the floor and sleep ) I come home and read this site. It really helps. ty again. Ps I was diagnosed 4 motnh ago and the only info I have gotton is on this site.

Hi Beverly Jane, welcome to Sjogren's World.

A laugh is probably the best medicine you can get (Readers Digest has it right), even if it's a laugh of relief in finding that we aren't alone in our symptoms, feelings, or experiences!

I'm glad you've been able to get some info here.

Hi Beverly Jane  :)

Welcome to Sjogren's world!

We have quite a lot of laughs in here believe it or not. Keeping a sense of humour gets us through a lot.  :)

I tend to agree with the walking through treacle analogy - and in my case - thinking through it as well.

Take care - Scottie  :)

If I painted a self -potrait...it would look like one of the Salvador Dali paintings.  The ones that look like they are melting. My body feels like that mentally and physically!

Lynn,

I also take Provigil.  I've been taking it for a couple of months now and it has improved my quality of life quite a bit.  I still get fatigued, but not like I had been.  It has also helped with my cognitive disfunction.  I only take 1/8 of a 200 mg. pill, so only 25 mg., but it is just right.  If I take more I don't feel well.  One doctor said to me that eventually I would find the combination of drugs, exercise, etc. that would work for me.  Provigil and a 75 mg of Tramadol have so far helped immensely.  I'm working on the other things and it is slowly getting more manageable.

Terri

For me the fatigue is kind of like jet-lag; not a "worked hard all day and now I'm tired" fatigue but an "I pulled an all-nighter-and-am-overtired" fatigue; some days I am feeling great; then almost in a matter of moments it comes in a wave; and there's a pesky headache that comes with it, one that doesn;t go away with aspirin or ibuprophen.

One thing I find that helps is meditation or just closing my eyes and sitting for 10-15 minutes.

since summer has hit us,, I am so fatigued all the time,, a 80 degree day wipes me out,, and this one from someone who loved the heat, between the pain of neuropathy,, facial numbness, dry lips,, actually burning lips,, hip and leg pain,, oh you get the idea, I;m just tired all the time,,

I am glad its not me just being lazy... whenever I admit to falling asleep in the afternoon after work, or laying on the sofa, my friends say I am so lazy.. they say I should exercise and I would feel better.... I struggle to walk the stairs to my bed some nights, so wonder how I can then exercise...

My legs feel like they are full of acid when I move them.. it washes over me in waves.. I tend to shut down mentally too (so many times my kids have asked me if I am in a bad mood with them because I am giving one word answers)... I try to keep going for the kids as I am all they have at home, but its a struggle. 

~From when I am in from work, I am counting the minutes until I can crawl into my bed.

I too think about the time it is till I can crawl into bed,, but then I think about,, ,,, well its going to be more of the same tomorrow,, hate to be so down,, but I cannot get these doctors to connect the dots

Along this same line of fatigue . . . what do you say to people when you just HAVE to go somewhere and be quiet and rest for even 5 minutes??

I just came back from visiting my family in another state.  I did all the driving - 1,100+ miles round-trip.  Up early, go all day, stay up late at night for 10 days.  I was able to get one nap in the whole time.  :(  There came a point one day where I just felt an overwhelming wave of "I can't stay awake one more second" in the middle of the day while visiting.  I excused myself and went to the restroom (but really sat in the recliner (it really WAS a recliner, NOT the commode!!!  heehee) in the area where we were staying for 5 minutes of closed eyes.  Oh I wished I could have squeezed in a half hour nap, but didn't know how I would pull that off or how I would explain it.  (My extended family doesn't really understand about Sjogren's.)

What do you guys say when you just have to get somewhere quiet to rest when you are out and about around other people and it's not just a matter of "going home".??

Bucky

Hi Beverly Jane!

Just want to welcome you to Sjogrens World. I'm glad that you found us and hope you continue to find the information here helpful. You will also find a lot of support and friendship here as well!

Isn't it nice to know you are not alone in this??  :)

Wow, I am learning so much from this site about this disease.  I am all of a sudden feeling so much better (not with my body), but just knowing that I am not crazy.  Thanks to all of you for sharing.  I've tried to explain to my husband what my fatique feels like.  It is so difficult for really anyone to understand that when I am done...I am done....period.  Wiped...no return until I rest.  I leave for work early in the morning so I can put in my eight hours...by the time 3:00 rolls around I am literally pushing myself to keep going.  I find I'm better in the morning than I am later in the afternoon.  Although...I come home and sometimes nap...then I find myself up later...(like now) and can't sleep.  What a cycle. 

My fatique feels like someone has worked me for days ....I'm tired to the bone...excercised until I can't move any more.  If I lay down I feel so much better. 

Which...is what I'm going to do now.  Best, Gail

Hi Bucky-If I'm around people, like at my lunch hour at work I throw my shades on and find an extra chair to put my feet on...and I just explain to anyone around me that I'm not being stuck up I just can't function right now and a nap is more important than lunch at this point. Sometimes even 5 minutes actually helps.---Net

Ha, this is an interesting thread.  I describe it as 'the feeling that a vampire has visited without me noticing - all my vital juices have been sucked out'.
Agatha

My fatigue is feeling guilty of not getting up to wash clothes, clean house (maybe dust one room), cook dinner because the kids are home (from school), do something at least.  I want to lay down and sleep and as someone said earlier, you sleep but don't feel rested.  Then I go through phases (right now) where I don't sleep at all.  As my fatigue gets worse, I stop listening to people speak to me, the noise is so bad that I shut people out.  I get irritable and snap at everyone.  I just want to be left alone, but can't with 3 kids and a husband.  It is hard to try to look happy and calm when all I want to do is hide in a corner and rest.

My type of fatigue is when I watch people speaking and nothing goes in ... when I hear in my head the words I can't be bothered to say aloud ... when the absolute best in the world is coming home to no. 3 son just putting the vac away having done all downstairs ... or when I climb into bed and its the best place I've been all day!

There is a healing power in solitude at these times.  Sleep isn't always practical, but 10 minutes alone, in a silent place, can revive me for a while longer until I'm reunited with my 1st love ... bed!!

Anyone ever tried a flotation tank?  I haven't but would really love to do it.  The thought of being somewhere dark, silent and supported by water is so appealing.  XX Ailsa

I think what you said about silence is very important Ailsa - I find noise sucks out my energy even if I'm relaxing in a chair - I'm so glad I didn't become a primary school teacher as I once planned - the noise of children shouting would have killed me!

is anyone else really really bored because of the fatigue - I want to read and talk and do stuff and I can't so i rest  but in the meanwhile I'm so so BORED!!!

Agatha

I also can't stand loud noises.  It stresses me out big time, then the wooziness hits, and I have to sit down for a while.

I worked shifts of every kind in a factory for 17 years , often working 4 days in a row at 16 hours ,  I thought I knew what fatigue was before this disease ,  NOT EVEN CLOSE !   

I strongly feel 'our type of fatigue' actually needs a NEW word to be coined... The dictionary meaning of FATIGUE just cannot encompass the overwhelming physical and mental exhaustion that a Sjs patient often feels. I have often told my docs how I suddenly want to lie down in the middle of a crowded street because I can't lift a limb... or how I feel I am being pulled out of a dark dungeon when its time to wake up after a supposed whole night's rest or how I feel like I have been wrung out of a washing machine like laundry... or how I cannot take a phone call since I am too tired to talk and how I cannot manage the children as I am just not able to think coherently...

Luckily... this doesn't happen everyday! I have learnt to LISTEN to my body...STOP and rest whenever I can and also before I am worn out. I have learnt to prioritize my life, plan my schedule to take breaks and no longer feel guilty about changing plans even at the last minute. I have learnt to communicate better with friends and family and over the years they too have learnt to accept my debilitating fatigue.

Also I have been very meticulous about my medication regime, visits to docs and monitoring tests. From not being able to stand on my feet for even 10 minutes... today I lead a near normal life thanks to medication, lifestyle changes and a positive attitude towards my illness.

One of the drugs that has been a life altering in my case is Atenol 25... a Beta blocker which helped me overcome my autonomous dysfunction. Extreme debilitating fatigue is more a thing of my past...

Hello All!  First time to this forum.  Love this thread - I bet I've used just about every one of these descriptions to try to convey to people what the fatigue is like.  But it was so neat to see them all here!  You guys are so fantastic.  It is like I found my mothership (everyone is like me instead of me being the odd one out because of my "disease").  I've used the flu one, the weights tied to my limbs, the gravity - all of them.  I tell people it is like everyone has a gas tank and mine is just smaller than everyone else's, so I run out of gas sooner.  And it is SO unpredictable.  I never feel the same way at the same time from day to day.  Right now I want to crawl up onto the desk and take a nap - by this time tomorrow I might be baking cookies or cleaning the house.  This thread made me think of last night - I got home from work and was just EXHAUSTED - I nearly crawled into the front door.  We had pizza for dinner because there was no way I could make anything, and I sat on the couch with my feet propped up watching Aliens all night.  When the movie was over I thought to myself that I needed to go lay down in bed and get some rest - but I had been resting on the couch all night!  I actually laughed out loud at myself - that I had done nothing but sit on the couch for the last few hours watching a movie and still I felt like I needed a rest!  Sometimes you just have to laugh at the ridiculousness of the whole thing!

You all take care and I look forward to more fantastic posts!

Hi all!  I've been reading your posts but I don't see what I have sometimes experienced....that is, a shaky feeling, like my blood sugar is down and I need to eat, but eating doesn't stop it.  I've just begun to wonder if this is related to the SS.  Does anyone else experience this and knows if it's SS related? 

Hi Jesse  :)

Are you on prednisone? I believe it can make you feel like that. Some thyroid conditions can make you feel like that too.

Take care - Scottie  :)

Hi Scottie,

No prednisone.  I'm on 400 mg. Plaquenil and 200 mg. Imuran daily.  My thyroid tests were normal when last tested.  I just spent three wonderful, but exhausting days caring for my two grandchildren (3 1/2 and 1 1/2  years old) and though I started out fine earlier in the day, by lunchtime (my usual time to crash) I started getting those "shakes."  No one has mentioned this in their fatigue descriptions so maybe it's not related. 

Hi ozgood & jordozmom,

Welcome to Sjogren's World.  Feel free to read thru all the posts here on the forum, ask questions, make comments, etc. 

Isn't it nice to find others who are experiencing some of the same symptoms and can offer suggestions, advice?  :)  We learn from each other.  :)

If you wouldn't mind, stop by our Welcome Members forum and introduce yourselves.  Welcome to the family of soggies.

Bucky

Hi Ozgood and Jordoszmom, welcome from me, too.

This fatigue thing is just the worst for me, and a lot of it is because of the unpredictability and unexpectedness of the "attacks" (more like blown fuses in my case). I remember (fondly) working myself into a state of exhaustion, but it actually felt pretty good, because it built up, and I earned it! Now, I can coast along, feeling pretty good, and all of a sudden I'm at klick 45 of a 50 K run, and I'm not going to finish!

Jesse, I get the shakes at times as well, but it always seems to be in larger muscles, like thigh and upper arm, and doesn't necessarily corespond to overall fatigue. I think of it as muscle fatigue, and it's as if the affected limb(s) suddenly weigh 10 times what they should, and I've been carrying them around for hours. I did wonder about a lactic acid imbalance (possible low Lactate Threshold), but haven't actually asked for testing, because to tell you the truth, the shakes don't bother me as much as the generalized "blown fuse" fatigue.

Thanks Linda,

I agree, the shakes are really more annoying than anything else, thank goodness.  This is just me in my never-ending quest to understand and label everything that's going on.

Hi Ozgood and Jordozmom!

Welcome to Sjogrens World...I hope you both find the information here helpful and the friendship and support here comforting! Read all you can and ask any questions if you can't find the answers that you are looking for!



Jesse,

I get the shaky feelings at time too...I haven't related it to my fatigue, but I don't really have an answer as to what I do relate it to.... :). Just wanted to let you know that you are not alone in this feeling!

I'm not on ANY medications as of yet, since my Dr. thinks I'm healthy. (I don't feel as healthy as he thinks I am)  But I get get very shaky too.  I was talking to my husband last night and he said are you shaking your hand on purpose? When I'm sitting down, I notice slight tremors.  Yes, I get fatigued.  Sometimes as I'm walking in the house after work, I say to myself "I hate feeling like this".  It's a different kind of tired.  Sometimes it just pours over me like a bucket of water, but if I lie down for a few minutes it will ease up.  I agree w/some of the others that a sense of humor is good.  Laughing is my best medicine, I feel very relaxed after a good laugh.  Thanks everyone, I can relate to many of you and feel I would be understood as well.
SusanL

Hi everyone and welcome to newbies!

Maybe we should start a new thread entitled: 'our type of shakes'?!

I get the deep inner shakes that Jesse mentioned, and also the tremors that Susan's husband has noticed she gets.  I think they're probably related to the central nervous system issues that I've got, and that quite a lot of us Sjoggies get.  But they definitely get worse when I'm tired.  Prednisolone has helped with the big leg wobbles, but my right leg still enjoys going awol every so often.

Hand tremors, shaky fingers, twitchy legs, tight and locked toes?  Sound familiar to anyone?  Let's have fun with this one too ...

Take care - Chickpea

Hand tremors....yes, on occasion and twitchy legs at night....restless leg syndrome, but for some reason, either the Plaquenil or the Imuran helps with that.  There are many things worse than restless legs.  I understand that's also pretty common among us.

I do not get tremors, but like Jesse I have restless legs.  Now that you mention it, they have quieted down quite a bit since being on prednisolone (and Plaquenil)...

Just re-read my post and I meant to say there AREN'T many things worse than restless legs.  Only people who have it can understand what I mean.  Absolutely maddening.  Plaquenil seems to be the common denominator here so far, in helping with restless legs, and that makes sense.  I've read that quinine can help that problem and Plaquenil has quinine in it.  Whatever, I'm just so grateful it works. 

I had my marathon day in Chicago yesterday....2 hours drive for rheumy and neuro visits then labs and a few other things to take care for insurance and parking etc. Then home for 2 hours ++ in RUSH HOUR!  :o I also had a few errands to run before and after I left town for my appts.


Geeeeeeez, was I tired and I'm sure that I would have had a good word or two to describe the fatigue...but I was too tired to remember what they were!  (http://www.freesmileys.org/smileys/smiley-laughing013.gif) (http://www.freesmileys.org/smileys.php)

Awww Lynnmarie . . you must have been one tired puppy after all that!!  I don't envy the Chicago traffic one bit!!   :o

Are you keeping track of mileage for your doctor appointments?  You can count them on your taxes!!

Hope you had some good reviews or whatever you want to call them at the rheumy & neuro visits yesterday.  How often do you see these doctors?

Try and relax tonight . . . put your feet up and have a glass of tea.   ;D

Take care,
Bucky

Hey Bucky...not a lot of answers yet, but we ran a bunch of labs to try to figure out some of my issues so I will know soon hopefully if anything shows up in them.

I used to see the rheumy and neuro every 3 to 4 months but now I have graduated to every 6 months! Wooooo hoooo!

Will let you know if I find out anything helpful from my test results!

I feel as if I'm trying to swim through molasses and the shore is a long, long distance away.

i usually feel like my whole body is being weighed down and i have a low energy supply that can run out from anything, even walking up stairs.

Hello Super Star, welcome to Sjogren's World. That low energy supply, and no reserve, is a huge problem for a lot of us, most of the time I think it's my biggest complaint...then something hurts and I rethink it  :D

If you'd like to introduce yourself a bit more, please feel free to start a new topic in the Welcome Member/Social Hour board, and tell us a bit more about yourself.

Quote from: clarestella on July 01, 2009, 06:27:45 PM
I feel as if I'm trying to swim through molasses and the shore is a long, long distance away.

Yes....this is a good one!

I always think of this thread/topic when I hit that point of fatigue that is indescribable!

Yesterday..I was out to dinner with my mom and a few friends and also running a couple of quick errands...I was feeling fine and then all of a sudden out of nowhere...I hit that big hard brick wall! I could do no more!


I finished what I had to but sat down several times in chairs that I found through out the store and used my cart for support. Thank goodness for shopping carts...because without them..I would not have survived many store trips!   :D


I then went and waited in the car for my friend to finish up (thanks goodness for cell phones too...so she knew where I was at  any given time....in a chair or in the car...lol). I went from 120 mph to 0 in a matter of minutes it seems! This is a crazy, crazy thing....but when it hits...it hits me hard! And I wasn't sleepy tired at all...my body just quit...and it would go no more!  ???

Lynnemarie, you said what I feel "I went from 120 mph to 0 in a matter of minutes ". That is what happens to me. I can be doing something, then all of a sudden, I feel like melting. I can go no more. In my case it is like 50mph to 0 though! :-[

Lynnnemarie,

Same thing happened to me this week.  My daughter and I went out to eat and made a quick stop at Macys.  We proceeded to Target and by the time we got there, I decided to sit in the car.  My daughter was surprised because I wanted to look at curtains but I just died.  I wasn't sleepy but just didn't think I could go.  This happens to me a lot of evenings.  All of a sudden, I'm just done.  In fact, I prefer midday outings since evenings are so iffy, I'd just rather be home.

Anna

Crabcakes,


Don't feel bad...I probably really exaggerated on that 120 mph! In fact...I'm sure that I did! :D

I have ministered care to three people as they were dying and when I get really exhausted I can't help but to think about them. I feel like I think they must have! Like life is being drained from me.

I am a peaceful law abiding person, NEVER been in trouble with law! BUT.. one day I was drained and had been for a number of days. This day I had a doctor's appointment, then went to get px filled. Well I drug myself to both! While sitting waiting at pharmacy like the law abiding citizen I am with my number in hand, minding my own business  someone broke line, her number was higher than mine, well I almost lost my mind  for a second because of someone wrongfully getting in the way of my much needed meds. I was not loud, but I was too persistent, not wanting to let the issue go, mainly because she immediately got rude when I kindly pointed out the fact that she had broke line. A thought came to my mind "do you really want them to call the police?" The answer for a moment was "YES" because then I would not have to drive myself back home and I could rest for a while in a cell without having to deal with my two year old grand baby who was waiting for me, at home!" This child almost killed me, I had to babysit her day and night for a month! Well thank God I did not have to go to jail. I don't know how I could explain that to anybody that knows me. Most any other day it wouldn't faze me, but that day the pain and exhaustion had me almost insane!

Hi, I'm new to the forums. Diagnosed with Sjogren's last year, but I know I've had since I was a teen. How many of you work full-time? I recently went back to work because we needed the money, but I feel like I'm giving the best of my energy to my job instead of my family. And just don't know how long I can keep up this pace. What do you all do to cope with work and family when you are so tired you just want to lay down and sleep?

Hello, Roetta, welcome to Sjogren's World.

That's a pretty common concern here, how to keep going when all you want to do (and all you feel capable of) is crashing! Not everyone diagnosed with SjS has the crushing fatigue, but for those that do, some doctor's prescribe a drug called Provigel, and a number of people who take it have reported an improvement.

When you have to work, and you want to give as much as possible of your energies to your family, you have to learn to pace and delegate...I know, easier said than done. You don't say how old your family is, or how large, but is there any way they could help out so that your family time isn't spent doing chores? Can you schedule rest times for yourself regularly so that you don't get overwhelmed? Planning quiet family activities like movie night, or board games is another way to share time, but not wear yourself out.

I'm sure you'll get lots more suggestions from your new friends here!

LynnMarie (and everyone)-

When I get that tired, I tell my husband that even my hair is tired, and he knows that's it for me, I'm done.

I've had those times when I'm out doing things and hit the brick wall.  I can't tell you how many times I've come home from the grocery store with only half of the groceries.  For me, the grocery store is the worst (I don't do malls and big department stores anymore).  I really have to pick a day when I'm feeling especially good, otherwise, even the thought of the grocery store wipes me out.  Fortunately, we have a smaller, family-owned store here in town that I can handle a bit better on bad days when we really need something.

Even though he's doesn't have any physical problems at the grocery store, my husband can't stand grocery stores, and he, too, only comes home with half of what's on the list.  We just have to coordinate which half we each happen to pick up!

Tracy

I can almost deal with the pains, but the fatigue drains me of ALL strength, even laying down does nothing to relieve it sometimes. Oh and the brain fog is a terrible problem for me at times. Mix the two and you got a hot mess trying to move around, ain't NOTHING getting done at this point! all I can do is get home to bed.

Bernice

Hi Roetta and Welcome to Sjogrens World!

I continue to work full time but my fatigue is helped by taking the provigil that Linda mentioned and was prescribed by my neurologist. My fatigue can become overwhelming and dangerous so I believe this medication has been a lifesaver for me....and its the reason I can continue to work at this time.

Hi,

When the fatigue is at it's worse, it feels like I've just gotten over a serious illness and my body is drained and weary.  When I fall asleep, I have no sense of time and can sleep for days without even being aware of the time passing.  It is as if I fell into Sleeping Beauty's coma and when I finally wake up, I'm starving!

Sassie

I've been telling people that I feel like I'm always walking uphill.  I am always sitting down to "refuel."  I am not used to stopping and resting.  I used to always be ten steps ahead of my husband and now I'm ten steps behind.  This morning I got up, showered, got ready for work and then had to sit down before I could actually leave for work.  My mother is 88 and she moves around and does more than I do at 59.  I can't even imagine how I'll feel at that age, God willing that I live that long.  It truly is debilitating.

Ok, I'm brand new to the forum and brand new to figuring out what is wrong with me.  Haven't been diagnosed by a doctor yet but it doesn't take a rocket scientist if you read the symptoms and have most of them.  I have Graves disease too, which the reports say half of Grave's patients have it.  Anyway, I have been describing my fatigue as if I am a Zombie.  I'm alive within the compounds of my body, but I just can't move or get up.  I wanted to ask too, I have arthritis in both shoulders so don't get much sleep.  EVER.  Some of you talk about falling dead asleep and staying asleep for hours.  I don't fall asleep when I take my "naps."  I just lay there until I can finally can get back up but don't get much accomplished the rest of the day.  Mornings are my best times and I'm up at 5 or 6 and take advantage of my good mental time, then do what I need to do as quickly as I can before the fatigue hits, then that's it for me.  For the last couple of days I have been sipping on water.  All day take a glass of water around just sipping it and that seems to have helped with some of my fatigue.  It hasn't gotten rid of it, just helped with the severity of it.  Oh man, I am not liking this at all.  I can't wait to get to my doc appt. on August 4th and getting started on treating what I can of it.

Hi Sunshinein,

Welcome!
It does feel kind of like being buried alive, as I often describe it, only neither water or much of anything else I've managed to discover helps. It just has to run it course for me and then weeks afterward I'm still not 100%. Good for you that you've found something to at least give a release of it's grip for even a minute. Mine can be so bad I honestly hate to move a finger or toe, just doing either feels like I have just finished a NY marathon, pulling a wagon, up hill!  ;D  SHOOT JUST EXERCISING MY BRAIN TO THINK IS TOO EXHAUSTING!

Peace & Be Blessed!
Bernice

Thank you Bernice.  I live in Alabama where it is very hot and humid so in the past months when I've been trying to figure out what is wrong with me, dehydration is one of the things I've wondered it was.  Also always thing about diabetes because my bro has it with Graves.  The water has helped some but with it comes other issues...  have to remember where all bathrooms are at all times, wherever I am.  Plus I drink so much I start feeling nauseous, which is where I am at now.  I started Weight Watchers last night thinking if I start eating healthier it may help a lot of things too.  I weigh 139 and would like to get below 128, so not much to lose just need better habits.  I would think good nutrition would help a lot of the symptoms.

Bernice,

Yes I would agree with you there, it does seem to just need to run it's course. 

I have been to therapy in a heated pool.  The warm water feels sooooo good and the resistance of weight is very low.  Upon getting out, it feels like I'm carring a heavy load.  I sometimes liken this to how the fatigue brings the body down.

Sassie

Hi Lynne and Sunshinein...welcome to Sjogrens World....so glad that you found us!

From another Lynn..... :D

Sunshinein,

I agree a few pounds off would probably help me as well. I weigh 132 lbs. I'm 4 11' that's too much, especially because I am used to weighing 106! It surly does not help to have to carry around extra weight when it's hard enough with what you're accustom to. My doctor promises to help me with a plan once we get SJS under control, well at the rate of progress we're going nature (old, old age) will have had more success than us! >:( ::) ;D

Sorry took me a couple of days to get back to the boards - sick kid. My kids are teenagers, so they help a lot. My job is very demanding and stressful so there are days, weeks, where it just sucks every bit of energy out of me. The kids are very good about understanding when Mom says she just can't do anymore. Not that that helps with the mommy guilt. I have a doctor's appointment next week so I'm going to discuss my options with her. It's nice to have people who understand to talk to! Thanks!!

Roetta - I know exactly how you feel.  I am 38 years old, I was diagnosed 10 years ago, and I've worked full-time since.  Over this past year what I thought was just a flare has turned into the "new norm" for me, and my husband and I are trying to decide whether or not working full-time is going to continue to be an option for me.  I am dragging myself into work (usually late, if I even make it in, that is), I'm not nearly as productive as I used to be, by 3 p.m. I'm ready to crawl onto my desk to rest, and then by the time I'm off work...just forget about it...I am ready for bed.  Sometimes I even sort of resent my job because I have to give it all of my energy and I don't have anything left for my family/household.  I spend my evenings worrying about getting rest and being able to make it into work the next day.  Oh yeah, my laundry is behind, the house is a mess, fast food for dinner (not good for my growing 12 year old son), then bed.  I don't get a thing done at night - I am lucky if I get my makeup off.  Financially we can do it right now, but we'll have to re-arrange all of our finances and really live on a strict budget, not to mention that we are in a recession and it is the worst possible time for such a change.  And our dreams of a newer bigger home for our family will pretty much be gone.  I have no idea of what to do about my retirement.  Anyway, if we were in a situation where my income wasn't necessary and we actually made the decision for me not to work it would be one thing, but I feel like I am being forced to do it - thanks to my disease.  Good luck to you and know that you aren't alone - others are in the same position that you are trying to make the same decisions.

criticism,

I can so relate to your situation.  For the past few years all I could think about when I got home rest, then 'oh please body, let me get some sleep', then I need to get up and out of this bed no matter how tired I am.  Upon getting to work it was, just let me make it till lunch time, then maybe I'll go home.  After lunch time, it was my goal just 2 more hours and my 20 min. break.  Then finally, I would tell myself that I've made it this far, just let me make it a few more hours and then go home. 

Trips to the grocery store was a dreaded event, standing and cooking was near to impossible, let alone cleaning up the mess afterward.  I was so tired I just wanted to skip eating and go straight to bed so I could rest and do it again the next day.  My youngest son who lived with me understood because he saw what a mess I was in.  My oldest son was so mean and just called me lazy and said I was always just making excuses for being lazy.  It hurt.  Finally I had to give up working and go on disability.  It wasn't a choice I wanted to make but was forced into by my dilapidated body.  I have to admit now that it was a good move as I don't feel near as run down mentally, emotionally and physically.

I guess the old saying that whenever a door closes a new door opens comes to mind.  And not all things that we dread are necessarily so bad. 

Good luck and warm hugs to all you ladies and gentlemen who are able to push yourselves to survive.

Just wanted to bump this post up for all of the newbies to join in.....I like to hear other peoples responses to the question in the topic.

And I think knowing how others feel helps us all since fatigue is such a common symptom for so many of us!

I too am new to this board and very thankful for finding it.  The info here is great and knowing someone else understands is even better.

As for the fatigue, I tell the lady I work with it feels like around lunch time everyday that someone is letting the air out of me.  I feel like a big balloon that is full of air in the mornings and by lunch, slowly but surely someone has released the tie on the balloon and the air is slowly being let out.

If I eat lunch which I usually don't, then I am totally wiped out.  I go to lunch at one pm and work until four thirty.  From two until quitting time is agony.  Driving home is all I can do.  If by chance I have to stop at the store or pharmacy it is even worse.  I have to go in at home and sit down in the recliner with my feet up and rest for at least thirty minutes each afternoon.  My family has come to expect to find me there when they get home.  I can't even carry on a conversation when I get home.

I also experience the shaking feelings mentioned earlier.  If I am out with my family shopping or for any reason, I tell them I have done all I can do and must sit down now.  They know to get me something to drink too.

Stinker

I am new here and reading what others feel like is so wonderful.  I can relate to most of the posts here.
I have days when I just can't do anything else, other days, I think I am doing ok, then shorty find my energy
is so over.

in a word.... Crushing

Ever heard the phrase "Dead man walking" well this fatigue feels like it's the literal sense of the phrase.

I feel like I ought to have a caution sign on my front and back, like when heavy, but slow cargo is being transported on side streets or highways.

Hi Everyone, for me the fatigue is like all the air is being left out of my lungs, and the battery is being drained out of my legs.
Karen

Just wanted to say that as a newbie, I really have appreciated reading this thread.
What has amazed me lately about the fatigue is that when I'm having a really bad SS day, I can come home from work and sleep for two hours straight... then sleep another 10 hours that night. It's like there is no amount of sleep that can fix it. I used to paint a lot at night, and watch movies, go out, etc. These days (seem to be in a flare) I am lucky if I can make it through a full workday and then cook dinner & eat before I crash.
Thanks so much for sharing your stories.

I like the balloon analogy Stinker...that really sums it up for me!

Thanks for all of the input everyone has given here..its really interesting to me...and I'm glad that others are finding it helpful as well!

Quote from: Victoria05202000 on June 15, 2009, 10:00:35 AM
If I painted a self -potrait...it would look like one of the Salvador Dali paintings.  The ones that look like they are melting. My body feels like that mentally and physically!

When I started reading this thread, that's much like the description that popped into my head. When the fatigue hits, I feel like my bones and muscles are melting inside of me.... like I'm soon going to be a puddle on the floor, with two beady little eyes gazing out thru bifocals, lol

The flu analogy really feels right to me- My version of fatigue includes achy muscles, or like my muscles have turned to water. When I'm like that, putting dishes away on the shelves, which involves putting my arms up, is just more effort than I can handle. 

I feel so weak, so wombly when I'm having the bad spells. I can't read, I can sleep most of the day and then still go to bed at night.

I'm lucky that most of my family is really supportive, but I get tired of trying to explain to my mom. She just wants me to take a pill, or do an exercise, or do something that will make me feel better. It's not that she doesn't believe me, it's that she wants me to feel better, and it's her worry talking. But it makes it hard for me if she asks "How are you?" to give the honest answer, because then I get a long list of questions about what I've tried lately.

Just a grumble.... Her heart is well-intentioned, just the way she does it frustrates me.

The best way I can describe it, it's as if someone removed my big toe like a cork and everything inside me drains out. leaving an empty shell of a body. 

Warmwaters,

I can understand your frustration with family who wants to have you just get better by taking a magic pill etc. I have dealt with this when dealing with people and I think its just that they are afraid of the unknown, especially when its your child (and no matter how old we get...we are always our mothers "child"  ;) ).

As you said...your mom believes you and she wants you to feel better so maybe she is talking out of fear and lack of knowledge about sjogrens. Would she be willing to come here and read to learn more or would she read a book about sjogrens to learn a little more about it? Knowledge and information is always a good thing....and like I said when people have that they can talk about things more intelligently after having the facts and not just speak out of fear.

Blue Kat, ,

I love your description...that is a good one!

My fatigue feels like I just finished a 5K race, with my muscles are feeling like wet spaghetti.  I also identify with those who said they could feel their energy flowing out of their body and I have to hold on to my arms to keep them from falling off.  I'm sorry I'm adding to such an old posts but I find it therapeutic to add my 2 cents.  What do you do for it?  I am not sleepy and usually have trouble sleeping (always something hurting when you lay on it).  H2Ocolor

Dear all,

I am a 'hitting the wall' person and when my arthritis starts to flare it's like flu.  My mental processes seem to scramble and I can't do anything but sit and stare into space.  Sadly I nearly always have trouble sleeping even when in the midst, and then suddenly I will sleep right through til mid morning ... it's like it just builds up to a point where my contrary sleep patterns can't argue any more.

Beverley

I was thinking is felt like anemia,but Beverly, you're right. It does feel like the dragging down of a horrible flu aches and all.

All I can say is total physical exhaustion, like my body can't carry me around any longer.  I get to a point where I really can't function due to the overwheliming fatigue.

I am always tired to some degree, but after a busy or stressful time (which probably would not seem busy to a person who doesn't deal with an autoimmune disease), I get to the totally exhausted, can't go on any longer stage.  If possible, I try to take a day or so (like on the weekend) to just do very, very little.  I get a good novel, lie on the sofa and read, and let my family fix meals, etc.  If I'm able to rest like this when I first start feeling really bad, this sometimes helps.  But other times, it doesn't.  I work from my home part time, and I also homeschool my youngest son who's graduating this year.  So my work is somewhat flexible, but it still has to get done, and some weeks are very busy.  I do notice that I get to the point of overwhelming fatigue quite frequently these days.  I don't know if it's because I'm getting oder (I'm 50), or because I've recently been diagnosed with Sjogren's on top of the psoriatic arthris which I've had for 25 years.  The psoriatic arthritis also causes the same type of fatigue, but it does seem to be significantly worse lately.

Becky

The fatigue is  definitely like the flu for me. It effects my head thoughts and body. Just wiped out. The Doctor put me on Paxil and I am sleeping better. I take it around 2:00 a.m. every day. I just try not to over do anything, house work exercise, yard work.  It is frustrating not to have the energy my fellow 50 plus women have.
Exercise does help if you can manage to get through it.  :'(

Hi
Recently fatigue hasn't put me to sleep - it's not like that for me. I have trouble getting to sleep. Fatigue is wondering whether I'm going to make it up the stairs because my calf muscles complain. Fatigue is spending less time than I should on the phone with my grown and flown kids because my arm get tired holding the receiver up. Fatigue is detesting clothes shopping because trying things on is too tiring. Fatigue is coming home from work and not having a social life because I just want to be a couch potato.

Take care - Scottie

 :o
I told my doctor that mine is an uncontrollable urge to lie down and sleep regarless of what I am doing or where I am.  A bed of nails would be fine.

I feel like the proverbial "wet noodle" when fatigue hits; I try to pace myself so I don't have too many "noodle" days.  However, some days it feels like somebody added extra stairs up to the bedroom when I wasn't looking and my legs feel like they each weigh 20 lbs. more.   When a good friend asks how I'm feeling, I just tell her it's a "flu day" and she knows it's not a great day.

Prairie gal

Fatigue is dragging myself out of bed in the mornings then struggling both physically and mentally through a part time job and praying that I get through the day without too many mishaps and two hours before my 5 hr. day is over all I can think of is my bed. Fighting the urge to slip off and lay down somewhere at work.

Driving home without stopping, well the car seems to know it's way home. Walking through the door and looking at things that need to be picked up and waking past it to head straight to bed for a much needed three hour nap, waking up feeling disappointed with myself cause I have wasted so much time in bed, especially the ones when that "nap" is not enough, but goes into the middle of the night, say three hours before I have to get up to do this all over again so I lie in bed cause I know if I get up before time I will NOT make it through those 5 hours.

I am starting to HATE my bed, it's robbing me of my life!!!!!!! BUT!!! I can't pull myself from it, it's either that or the floor. I rather close mysef off where no one can see me like this.

My life has been totally reduced to this from one that was over active, a workaholic. I used to work 7 days /12 hr. each.

After reading all the posts, I have to say each and everyone of them describes it very well.  It is overwhelming!!
I just got my latest blood work back and my vitamin B12 is extremely low so I am starting shots once a month next week.  I have to go into the office
to have them given until I can learn it on my own.  I don't look forward to them.
The doctor took one look at me this week and said you are literally worn out aren't you?  Of course my reply was YES.  She said the darkness under my eyes alone would give it away.  At least she cares and understands.  More than I can say for my rheumy who says it goes with the disease.
Hope the shots give me a little more energy for the things I would like to do now that the weather is getting better.
Have a good weekend.
Stinker

When it hits I am overwhelmed with a great need to lay down and fall asleep. I am unable too resist it. If I am in a situation I can't lay down like driving or work I have too fight like heck to overcome this relentless fatigue that is intent on taking over my body.Sometimes it wins with me dosing off for 1-2 seconds. Either mid sentence or while driving. I feel like the character  out of Duce Bigelow Gigilo ,the women with narcolepsy.

Louise,

How scary if you fall asleep for 1-2 seconds while driving!!   :o  What seems like a few seconds could be longer than that.  Please be careful driving when you are extremely fatigued - perhaps if you pulled over and took a 15-minute nap or something - it might help you.  How long of a commute do you have to work?  Maybe after work you could take a quick nap in your car before you start driving home??

I was a passenger once in the backseat of a car with a driver who dozed off - luckily, I was watching him and hollered at him.  I never, never, never sleep in a car when it's in motion.  That one time scared the living daylights out of me.

Bucky

Thankfully, I get the fatigue only seldom. But when I do, I have a kind of premonition that I am going to hit a brick wall. Call it ESP if you want but I definitely get the feeling that I better get some extra rest or I will "run out of gas". Sleeping in more on the weekends takes care of it for me when this happens which I am very thankful is fairly rare.

I'm also a hit-the-wall person.  I'm tired all the time, and don't wake up refreshed, but there are definitely one or two times in the day that WHAM!  I just get sooooo tired.  And it's not so much a physical tired as it is a mental tired.  I work full time, so I continue working, but I become more like a zombie, and I work on auto-pilot.  I don't quite take in what other people are telling me.

And I've gotten to the point where I have to tell the kids when I'm at that stage, because I get VERY quick tempered when I'm like that - I can't handle anything they do. 

Bucky,    I only had one occasion where I dosed off for a second while driving .It was very scary and I have not driven again that tired.

Quote from: amberjolie1 on March 28, 2010, 01:09:23 PM
I'm also a hit-the-wall person.  I'm tired all the time, and don't wake up refreshed, but there are definitely one or two times in the day that WHAM!  I just get sooooo tired.  And it's not so much a physical tired as it is a mental tired.  I work full time, so I continue working, but I become more like a zombie, and I work on auto-pilot.  I don't quite take in what other people are telling me.

And I've gotten to the point where I have to tell the kids when I'm at that stage, because I get VERY quick tempered when I'm like that - I can't handle anything they do. 

I haven't been diagnosed yet (altho my Rheumatolgists thinks it's likely) but I just had to reply...Me too!! I get so zoned out that I can have a whole conversation with someone and I'll be like "yep" "uh uh" - answering questions and then as soon as its finished I have no idea what we were just talking about! Scary.

This is right thread for me, my fatigue is on its worst by now, and it is even miracle I am writing this now!

Last week I spent laying on my sofa in front of TV feeling completely exhausted, I could not walk, sit up, eat(lost 5 pounds in one week), most of the day and night I was just laying down and slept.

I also have some kind of pressure in my head, my brain feels so heavy and makes me very sleepy. My whole body feels very weak, I noticed trembling in my legs and on the top of that neuropathy does what usually does. :)

And I must say, I am so proud of you ladies, who manage to have job, family and kids with this disease. I have very caring husband, but I feel so guilty for being so ill all the time. I am not socialising as much I used to, we booked short holiday in May and I am already in fear that I won?t be able to go.

I wish you all best!

Quote from: lynnmarie219 on June 14, 2009, 10:44:05 AM
Hi all,

I started this topic on the old board format and I thought it would be fun to start it again since it got such a huge reaction by everyone!

So...how do you explain the type of fatigue that so many of us feel?


I describe it as, "You know when you first wake up, and you are staggering around looking for coffee? It's like that, only all day long."

Or, "You know that dream you have where you have to run but your legs are stuck in quicksand? Like that, only all day long."

The above descriptions already so perfectly describe this type of fatigue that I hesitate to add mine.

All I can say is that it's as if cement was running through me, and sometimes my eyelids feel as if they're going to close on the spot - but then it passes.

Yesterday, I sailed through the day pretty well, doing all the housework.  Who knows what each day will bring ....

YAWN!!! I'm so watching the clock at work. I can't wait to get outta here and into my jammies!

Bloodless

I feel for you. It's 10 pm here in the UK, and I'm well and truly in my jammies.

Hugs
Kathyx

Ohhhh myyyyyy...I've not been feeling well....been in a flare....and been without my provigil....so I am again experiencing this awful fatigue that we can not adequately describe to anyone who hasn't really ever experienced it.....the kind that makes you want to just lay down where ever you are at and fall into a deep deep sleep!


I KNOW you all understand! (http://www.freesmileys.org/smileys/smiley-sleep005.gif) (http://www.freesmileys.org/smileys.php)(http://www.freesmileys.org/smileys/smiley-sleep011.gif) (http://www.freesmileys.org/smileys.php)(http://www.freesmileys.org/smileys/smiley-sleep025.gif) (http://www.freesmileys.org/smileys.php)

I have been feeling pretty good for past weeks, THEN, it hit me I sat down just for a few minutes after coming from work and went into a comma! The worst part about it is I am not supposed to close my eyes no more than 30 mins. with these lens in and I slept ALL night. got up and my eyes felt the worst!

I've always described it as the type of fatigue you would feel if you had just run a 20K race, uphill, through chest-deep mud. Or that my arms and legs feel like they're encased in cement and weigh 200 lbs. each. Or that my battery has totally been drained and just moving is like trying to push a car around by myself.

Oh, I wanted to add that even though I have had very little fatigue since I started taking the supplements in my signature, I must be having a flare because for the past few days, I can barely move! (I'm also have a lot of numbness in my left foot, balance problems, and my memory problems have gotten much worse.) I hate to think what I'd feel like without ALA and ALC!

I wanted to add too that my fatigue is not sleepiness. In fact, I seem to fight going to sleep (as you can probably tell because it's almost 2 a.m. and I'm still up, which is usual for me.) My fatigue just feels like my muscles do not want to cooperate with me.  It's like the connection between my brain and my muscles aren't getting through. Horrible!

Sometimes my fatigue is sleepy kind of fatigue and sometimes it is exactly as you describe Shashi.....muscle and body fatigue...it varies...sometimes just laying down without falling asleep helps...but in my case I usually end up into a good long nap!

I can't sleep.....that is, I can't fall asleep easily.

I would describe my fatigue as the 'Jimmy Hoffa Syndrome'....mired in concrete.  I literally can not move.  Whether this relates to my neuropathy or not, I dunno....regardless, it is akin to experiencing the gravitational forces of Jupiter.  I force myself to move and even make myself have responsibilities that make me move, but, I can't say I move fast.  Outside....I am finding myself increasingly attached to my garden tractor to get around my property!  Sheesh.  Never the less, I do get a substantial amount of stuff done, living on a small farm....no option but give it all up.  Last evening, I managed to shock myself on the electric fence and hey....I slept pretty darn good....had a few nightmares, but other than that....I slept all night....and no palpiations!

I just bought expensive 'trekking poles', but I have not resolved the issue as to hang onto them with my gimpy hands....oh...whatever.

When I get to 8pm, I commence my lucid coma state and stay that way until the wee hours of the night....when the few hours of sleep I get, start.

Oh Inga...what a way to describe your fatigue...mired in concrete, huh? That pretty well sounds familiar too!

Oh and please be careful of those electric fences...ouch!!!

Mine is like a bad case of jetlag with headache.  I am not "sleepy" just totally exhausted and, of course, that wonderful brain fog.  I am fortunate that  don't (yet) have the joint pain.  So I do try and force myself to do some physical activity and find that it does help.

Inga, you are hysterical!

When I was a child I ran into the electric fence 3 times in one evening!  My grandfather told me even the dumbest cow learns faster than me!

Janna

How do I describe fatigue? Well I feel like someone opened my mouth and sucked all the life out of me. It is so undescribable. I know I just have to lay not sit down and in time it will go away. I have done this twice watching my grandkids, pretty scarry.

You just get this overwhelming feeling that you can't go on. Sometimes my mind wants to go but my body just won't keep up. It is saying whoa hold on now, I am not doing that.

I like the "mired in concrete" term, it is just exactly how I feel. Sometimes I am so tired but my eyes won't close.  I don't know why when you are this tired you can't sleep. It is like the brain and body are disconnected.

I don't know if I am making any sense, I think the fog is moving in.
love to all, harlin

Quote from: JannaLee on May 16, 2010, 12:00:01 PM
When I was a child I ran into the electric fence 3 times in one evening!  My grandfather told me even the dumbest cow learns faster than me!

Janna....you are too funny...or should I say your grandpa's comment is too funny!  :D Thanks for the laugh!

And yes Harlin....you made perfect sense.....at least I understood it......maybe "sjogrens brains understands sjogrens talk"??  ;)

I had a really sad moment today.  My son was home from school. He's been tired lately and has been taking a nap in the afternoon. He came home today and said, "I'm not going to take a nap today. Dad told me that I should avoid sleeping during the day because I'll turn into you."

That really hurt. I'm not sure his father actually said that, but I know my whole family doesn't understand what I am going through. I do nap during the day and there are some days when I can barely come home from work. I find that I have one night during the week that I have to crash, where I fall asleep early and stay asleep.  I have severe sleep problems and I don't go into stage three sleep. I wake up every fifteen minutes (not completely). 

I am so tired!! My "brain fog" is so bad that I can't remember simple things anymore-- like people's names. I'm not sure how long I can stay this course.  It is hard to explain to people how absolutely tired I am.

(((((((((kwolfsheimer))))))))))

I can certainly understand how a comment like that would hurt you...I would feel the same way. And the thing of it is...it was probably said as a joke or in passing, but when you hear it back...it doesnt feel very simple or funny.

We definitely understand how the fatigue feels here....so if others can't understand it.....you know there are people here who do! 

kwolfsheimer

I think too that your husband may have intended this to sound 'cute' but it felt anything but.  It is sad that even tho the people who live with us and see what we go thru evey day don't always understand how we feel and how some off hand remark can hurt. 

Hugs from those who do understand!!!   :-*

G'day all,  Here's my offering. (I even have a name for it.):  Jacob Marley's Syndrome.  Just like Jacob Marley in, A Christmas Carol, I feel loaded down with chains..   

It happens so fast. Like someone unplugged me. I can't speak or turn my head. I've always thought of them as episodes    My kids call it the "mommy can't talk time". It is so intense that I couldn't explain to my so doctor weather I couldn't speak because I was neurologically unable or from a fatigue so deep it trapped me inside my own body.

Rose

I like all of these descriptions.  I just wish these episodes could be more predictable.  One moment I'm my version of fine and the next I have to find somewhere to lay down because my body just quit on me.  Going to the store is like playing a game of beat the clock.  How many things can I get before I feel like I'm going to pass out from exhaustion?  How are there medicines to help erectile disfunction and none to adequately combat autoimmune fatigue??!

Thank you lynnmarie and Sassycat for the understanding. I don't think that most people understand what we go through, which is why it has been SOOOOO helpful to have this forum where I can listen to people who are just like me.  It validates how I feel and makes me realize that I'm not just lazy or crazy when I want to break down and cry because I can't do anymore-- can't take anymore.

I was talking with someone the other day and realized that I wasn't making sense, I was so dadgummed tired.  I haven't had a moment that bad since my first child was born and I had that postpartem fatigue!

I had been feeling really good since January, but this past month I'm starting to drag. It's been an especially hard week at work, a lot of administrative bs, and I had a student cuss me out--first time ever, in 19 years. It's the end of the year, which is stressful---but I'm finding myself falling asleep as soon as I sit down at home.  :(

I'm new here and can relate to all your descriptions. I describe myself like a tyre with a slow puncture which should be filled with fresh air every night, but never ends up full as it's leaking out almost as fast as it's being pumped up, so I start each day deflated and it just gets worse as the day goes on.

Not waving but drowning pretty much sums it up too!

Jacob Marley's Syndrome, Mommy Cant talk time, the punctured tire analogy....these are all great....and I think we all can relate to most of them!!  ;D

I'm sure many of you can't do this, but when I am so dog-gone tired I lay down and let the drain.  I have learned over the years that it seems more stressful to fight the fatigue and giving in to it.  I am by no means a quitter but I think when I let my mind except that my body is tired, I wake up feeling more refreshed. 

Like I said, "I" can do this and I am sure many of you don't have that ability especially if you work or have children.  This isn't the easiest thing to do either.  Just the 'guilty' feeling that go with having to take a nap used to eat me up.  I think accepting my bodies limitations helps in more ways than one. 

Take care, and know that many of us really do understand!

Sassie,

Sometimes I am able to do this without much thought, but for the most part I will lay for a few minutes thinking I will get up and do whatever, but when my body wants to shut down into a nap I have the most uneasy feeling of trying to resist it to the point it  can be torture! My mind goes to a hundred things I need to do or that I feel so lazy because this ain't a normal thing for someone my age to be lying around at this time of day. So I jump up like I am going to take on the world only to be flatten most of the time, especially if I am exhausted.

I really hate this, the needing to nap thing!! I have finally got myself where I can stay up most days.

Arrrggghhh!  All of the above.  Takes 2 plus hours to get to sleep, then awaken several times, then wake up tired after 10 or twelve hours and sore from being in bed.  I've actually collapsed twice - once while fixing dinner and the other time just (trying to) walk from one room to another.  My body just goes limp and down I go.  My sweet husband has done the grocery shopping for the last year - lucky me, he works at Wally World.  As you can see, I have my days and nights mixed up (4:30 a.m.) because if I'm not in bed trying to sleep, I'm zombie woman trying to stay awake.  Now THAT'S fatigue!

Wow LeoLady, It's nice to know that I'm not the only one with the collapse issue.  When I get that feeing of "sit down or fall down" I only have a short time to sit on the floor till the exhaustion passes. I'm not dizzy or anything just completely wiped out.  I've had it happen while cooking and while walking up the hall.   

LeoLady,

I too have Fibro, poss. SJS and am hypothyroid.  I know exactly what you mean, especially the part of about sleep.  You're exhausted but the mind and body will not shut down.  Maybe it's a subconscious thing that if you finally give in to the the exhaustion you may not get up again. 

Anyway, the only help I have gotten with this is generic Ambien.  I tried Ambien brand name and it left me feeling drunk the next day with major brain fog.  Many sleepless nights later I gave Lunesta a try.  It did not give me the hung over feeling, but after a few weeks I was waking up 5 to 7 times a night!  Not good when a months worth with insurance costs 86!!!  I value sleep but not wanting to go broke, I found out that there was a generic form of Ambien.  Hooray!!  This formulation lets me get at least 7 hours of sleep and I don't feel hung over and no brain fog, well, not anymore than usual. LOL  This has saved me $71. a month and I don't feel like I have a shroud of weight and fatigue holding me down.

Might be worth looking into, even if it's for the short term to get some relief.

All good wishes.  ;)

I posted this topic quite a while ago and it has become pretty long...but I always find it interesting to hear how others describe "our type of fatigue".

Maybe we can start a new thread just like this one to get some input from our newer members...what do you all think?

Great idea, Lynnmarie.  Go for it!  :D

Debilitating.............makes me feel almost bed ridden!

I like that story about the spoons. When it hits me, my brain shuts off, I can't talk sensibly and I can't pick up on things others are saying as well as usual. Makes it hard to work. I can't remember things and my head feels like it wants to roll off my shoulders, my neck just can't hold it up anymore. I also ache more in the achey places and muscles aren't coordinated so I might trip and fall more. Sometimes I have to let the wall hold me up as I walk. If I don't rest when I get the signal, then I get sick!

My fatigue has changed from when I was first diagnosed, before I would feel like someone took the plug out and I could feel the energy running out.  Now it is a year and a half later and I take life in much smaller doses.  My vit. D deficiency has been taken care of and I know my limits.  Now there are sleep issues and I have trouble feeling rested.  I am used to not having much energy and it seems normal now.  My complaint is my family is young, they have energy and are leaving me behind.  How do you ask your family to stay home because you don't have the energy to go?  It isolates you.  H2Ocolor

I work full-time.  Some days I wake up and feel like I haven't slept at all.  Off to work I go and can't imagine how I am going to make it through the day.  Once I get home, I hit my recliner and crash.  I get up and eat something for dinner, watch a little TV, go to bed and get up and do it again the next day.  My weekends are spent recouperating so I can do it all again the following week.  There are no reserves for much else.
Sometimes I think about cutting back the number of days I work, but it's like I don't want to admit "defeat".  I was explaining this to my grown daughter the other day and her response was...do you think Venus Williams wanted to withdraw from the US Open?  She is right...  I admit I am stubborn to a fault.

My description is that I feel "like I'm going to fall over and die."  My wall almost always comes at 4 p.m. when I'm on the drive home from picking my kids up at school.  I hold it together in the car so I'm able to ask the kids how school went.  But by the time we get home, and after listening to them fight, I *have* to go lay down.  I'm always feeling so guilty for plugging them into the television/computer/video games but I try to remind myself that they will be served much better by a mom who hasn't fallen over and died.

Great thread, BTW!

MB

Living life with fatigue is like trying to run a race, except in your lane, you have to run through a tank full of neck high water, while the other contestants are running on dry ground. Other times it's like an undertow/riptide along the beach that keeps pulling you off course no matter how hard you fight. It can also be a tsunami, resistance is futile, you must give in, there is no choice. I'm tired now, thank goodness it's bedtime. :D

Our Fatigue ....

It's just like the Harry Potter dementors ... a black sheeted death figure hovering over you and literally pulling the life out of you ... leaving you there lifeless ....

That's EXACTLY it - IMHO.

We are all being attacked by dementors that we can't see ... but we sure can feel.

This is a great thread --- I'm so glad you brought it back!

I often wake up with what I call the "hangover-carsick-flu." In fact, as I said previously, before my diagnosis I thought perhaps I had become such a terrible alcoholic that I got a three-day hangover from a single glass of wine. Or no wine.

Walking feels like I'm in a swift river up to my hips, and I'm trying to walk against the current. It takes everything I have to stay upright, let alone to move forward. I often trip over my own feet.

I'd use a cane to help me keep my balance, but my arms are as useless as my legs. Besides, I can't even open the milk jug, let alone hang onto a piece of metal.

I also have brain drain. My husband and I went to see a movie, and when it was over he started talking about a particular scene --- and I didn't remember having seen it. That was scary.

Like somebody unplugged me.  Plain and simple.  Unplug, go into sleep mode. 

My rheum told me to explain it to people as, "It's like always having the flu."

Quote from: DragonflyC on October 13, 2011, 01:00:27 PM
My rheum told me to explain it to people as, "It's like always having the flu."

That's exactly how my pain feels!  But my fatigue, like I said above, is like I've been unplugged.

These are more great descriptions...thanks for the input everyone! I guess I was too late to start a new thread so we can continue right here...lol!

It's so difficult to describe our fatigue to others, that's why I started this quite a while ago...people say...yeah I understand...I'm tired too...but its NOT the same as just being tired or sleepy. It is much more than that.

Sometimes when I'm so tired I can actually feel my eyeballs rolling up in my head trying to keep them open. (Not good in certain circumstances like when I am at work).  ;)

These are good descriptions; we have some creative-thinking people around here!  ;)

A66ey,
Yes, the feeling of walking in a swift river; very good.  And the milk jug and I have had fights recently.  ;) A couple of weeks ago I could NOT get into a new jug of bleach.

When my husband saw the jug later, it had a gash in the side near the top I'd taken a steak knife to, and he asked what IT did to deserve that?    ;D I told him it annoyed me and I had to "hack" into it.

Meld, I have more trouble opening bottles and jars than anything. At home I've got a wonderful jar-opening gizmo made by OXO with what looks like two saw blades in a V-shape that I can open just about anything with. But the other day I was here at work trying to fix my lunch. I couldn't get a mayo jar opened and I asked one of the guys here to help me. He thought it was going to be something tough to open so he put his whole manly strength to it --- and *whoop!* it opened so easily he was shocked and nearly dropped it on the floor. I don't know who felt sillier.

Narablueyes and dragonfly it is like being unplugged or having flu.  I tell everyone it is like having my batteries taken out.

Quote from: Meld256 on October 13, 2011, 10:03:30 PM
These are good descriptions; we have some creative-thinking people around here!  ;)

A66ey,
Yes, the feeling of walking in a swift river; very good.  And the milk jug and I have had fights recently.  ;) A couple of weeks ago I could NOT get into a new jug of bleach.

When my husband saw the jug later, it had a gash in the side near the top I'd taken a steak knife to, and he asked what IT did to deserve that?    ;D I told him it annoyed me and I had to "hack" into it.

I'm starting to drop stuff and trip up more.  I like the steak knife to the jug!!  I've taken a hammer to boxes and other garbage to get my frustrations out.

Fatigue--like being in slow motion. Every step is  a chore and my brain is a step behind. My recliner is my favorite spot. I can sit there for an hour at a time and do absolutely nothing; and don't ask what's on TV, 'cause I won't be able to tell you.

Quote from: quilt4fun on October 14, 2011, 11:06:42 AM
Fatigue--like being in slow motion. Every step is  a chore and my brain is a step behind. My recliner is my favorite spot. I can sit there for an hour at a time and do absolutely nothing; and don't ask what's on TV, 'cause I won't be able to tell you.

*like* ( my version of face book's "like" button)

Katita

I understand your concern about work; I only recently cut back to four days a week. This means I work 2 days, then have a rest day, then work another 2 days, and then it's the weekend. It took a lot of courage to ask for these hours, but believe me, I'm beginning to feel like I am getting my life back. In fact, I don't honestly know how I managed to work 5 consecutive days.

Go for it!

Hugs
Kathyx

To me when the fatigue hits I'm "Road Kill"   :'(

Wow! Katy I'm impressed. It would take a lot of courage to ask for less hours. I'm glad they gave it to you!

I agree with the flu analogy!

Kathy,

I'm so glad your new schedule is helping.  Hope you are enjoying every "Kathy Day" in mid-week!  ;)

i too feel like a salmon swimming up a river full of bears, its worse when i first get up,, I wonder if I;ll evenmake it to the kitchen,, its gotten alot worse lately,, even getting a shower my legs will feel like lead,, have to have the heater on even in the summer,, small fiber neuropathy,, thehands dont work either,, just opening anything will make my hands hurt for hours,, I get so frustrated,, I think to myself,, why does opening  a simple jar make my hands burn and be numb for hours,, for me the fatigue is the fact that i get so frustrated at notbeing able to do much of anything,, nothing like I used to thats for sure,
  It was so bad Wednesday,, after a day of gagging, tripping,,and allaround frustration, i went to bed at 5PM,, andnever got up till the next day at 6am
Last night I broke down and took one of those Obana pills my PCP the wonder doc gave me,, about 2 in themorning i was up scratching my skin off,, head to toe,, add in the pain of neuropathy,, digging your skin off,, and i didnt sleep a hour,, made for alng day, looked at the side effects,, Itching is one of them,, figures,, Ilook like a cat got me,, fatigue is knowing that tomorrow is pretty much going to be the same as today,, no where to go,, nothing to do,, not becasue i dont want to,, i just cant physicallydo it,,frustration is a big part of my fatigue,,

I call it mind-blowing, bone crushing, comatosal. I told my doctor that it was like a terminal and lethal orgasm except the only satisfaction is sleep.  It is so strong that instead of the extremity of pleasure, you just are passive and debilitated.  And that is a good day!    I say " excuse me I am wearily stupedfied and incapacitated. "     .  Like the Wicked Witch in The Wizard of Oz, once the water has been thrown on her..."Help...I am melting"       sass

Meld, I am enjoying my Wednesdays. The best part is being able to stay in bed beyond 5.45 am. For 6 of the 8 weeks I have had my Wednesdays, I have been going for physio sessions, and the usual doctor appointments. But I don't mind that at all - it is far less stressful than having to ask for time out of work, and I'm beginning to feel the benefits of the (very gentle) physio.

Kathyx

Whew! Just let me colapse.

Hi Kathy

It's good to hear that you're enjoying your Wednesdays.  Maybe that's one of the best ways to cope with 'our type of fatigue' - just harness what energy you can when you can, and ride out the storms.

Chickpea xxx

Kathy,

I'm sorry for my late response.  That's great that you have a less-stress Wednesday each week.  I'm so glad it's working out well for you, and the physio is helping.  Good for you!

Take care,
Melinda  ;)

FINALLY... A people that gets me and my fatigue!!! It's a CONSUMING fatigue. 1 minute you in an aisle picking out some grocery, the next your in a funnel being zapped of all possible energy. And there is never a "set schedule ", it just welcomes itself at any given time, which is always inconvenient for you :o

Welcome Corleyer!

That's what this site is all about...information, understanding, and support. We "get it" becasue we have all been there! It's hard to explain the fatigue to others who haven't experienced it.

Glad you found us....maybe you can tell more about yourself in the Welcome Section as we would  like to get to know you a little better!

Like wearing a lead blanket that wants me to lie down when I dont.

Corella - YES! That's me right now! The sun is shining, the dogs need walking, I'd LOVE to be out there, but OH MY LORD. I wish I could push that lead blanket off me. I WANT TO GET UP!

I was once treated with Interferon (a cancer/Hep C) medication.
I compare my fatigue to how I felt on Interferon...coma is a good word.

  I was grocery shopping the other day and thinking that it was like trekking through deep sand (possibly quicksand) in a desert, stinging eyes, dripping sweat, cracked, peeling lips... The Sahara experience. This alternates with the Antarctic experience, which is similar but includes chills, and trekking through waist deep snow, instead of sand. I get the shakes too. Lovely picture I make, I'm sure, staggering along! Like you guys already said, thank God for those shopping carts to hold us up!

I'm sure that I sometimes look pretty silly hanging over a shopping cart walking through a store...but if it wasn't for that cart...I'd fall on the floor!  :)

Hey that rhymes.... ;D

I ditto everyone.  Corleyer I feel exactly like that sometimes. It can hit anywhere at anytime without warning. It's kind of like lighting. welcome to the forum Corleyer!  :)

I had Typhoid Fever about 30 years ago (yikes, that makes me sound old, I guess I am?) anyway, with the Typhoid fever I had extreme fatigue like coming out of anesthesia. When the lightning strikes and the "stronger" fatigue hits, I feel like that.

I have to say stronger because sometimes I see a little resemblance of the "real me", just to remind me what I'm really like. Then I get excited for an hour or two because I feel normal until it hits again.

Hi All,

I am new to the diagnosis of Sjogren's, had the lip biopsy by an Oral Health Doctor. Been to the Rhemutologist and now I am waiting for all of the blood tests to come back. I think I am glad for the diagnosis... to finally know what is happening to me. I'm anxious to know the results of the blood tests.

I get so suddenly tired it causes me to be conflicted. Yes, I want to go meet with my friends at the coffee shop, but that means I have to make myself stand up and drive there. Yes, I want my kitchen cleaned before I go to bed but it feels like my bones are made of lead. Yes, I want to go to bed but the 6 steps I have to climb looks like a daunting task. Do you ever talk yourself through the, dare I say, task of just standing up or walking up 6 steps? "Come on, you can do it. Push yourself up." I've got a watch with a thick metal band, I like it but I don't wear it very often because when I am tired that watch feels like it weighs 10 lbs. I would sit down and cry, if I actually had enough tears. (I get permanent plugs in my eyes on Thursday.)

I am drifting in and out of anger about this, much of the anger is fueled by the flu-like symptoms. My self talk goes something like, "It is going to be ok ... but right now it rots!!!" or "I am learning to live with this, emphasis on LIVE."

I have a couple of questions:
Does anyone else get cold when everyone else in the room is warm?
Do you ever just suddenly get so sick to your stomach you could throw up?
Do you ever stop waking up in the morning with the first thought of the day being, I have Sjogren's?

I don't ever think 'why me' because honestly it is not fair for anyone to have this.

Thanks,
Lona

Does anyone else get cold when everyone else in the room is warm? I'm usually way too hot, and then suddenly start freezing!

Do you ever just suddenly get so sick to your stomach you could throw up? Only if I take meds on an empty stomach

Do you ever stop waking up in the morning with the first thought of the day being, I have Sjogren's?
Yes. You will. Instead, you'll wake up thinking "where are my f***ing eyedrops?"

another first: I was walking through the grocery store, hanging onto my cart and thinking 'geez,  I am an old woman'. Really, I am old (fifties) but this is riduculous.  Anyway, the 'first' was that I let the courtesy bagger load the groceries in my car. I will do this again - it really helped! We do what we can...