How do you describe "our type of fatigue" ?

[sunshinein]

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.

[SassieCat]

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

[lynnmarie219]

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

From another Lynn.....

[Bernice]

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!

[roetta]

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!!

[jordozmom]

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.

[SassieCat]

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.

[lynnmarie219]

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!

[Stinker]

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

[decemberdeb]

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.

[missyb]

in a word.... Crushing

[Bernice]

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.

[Karen]

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

[Claire the Red]

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.

[lynnmarie219]

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!