How do you describe "our type of fatigue" ?

[lynnmarie219]

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!

[lynnmarie219]

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!   


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! 

[Crabcakes]

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!

[ohiolady]

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

[lynnmarie219]

Crabcakes,


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

[Bernice]

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!

[roetta]

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?

[Linda196]

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!

[ktfabian]

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

[Bernice]

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

[lynnmarie219]

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.

[SassieCat]

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

[Lynne]

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.

[sunshinein]

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.

[Bernice]

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!    SHOOT JUST EXERCISING MY BRAIN TO THINK IS TOO EXHAUSTING!

Peace & Be Blessed!
Bernice