How do you describe "our type of fatigue" ?

[lynnmarie219]

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!

[DragonflyC]

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.

[Rhonda]

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!

[dunhams]

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

[Chickpea]

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

[jaygee]

Someone pulled my plug out?   My batteries just died ?

I also like the "walking through treacle"

[dbab]

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.

[tomsmom]

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. 

[Epson]

Lynnmaria,

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

[Linda196]

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.

[lynnmarie219]

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! 

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

[TerriJ]

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

[Net]

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

[TerriJ]

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

[salsen]

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.