How do you describe "our type of fatigue" ?

[Still in the hunt]

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,,

[sass]

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

[Katybarstool]

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

[bloodless]

Whew! Just let me colapse.

[Chickpea]

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

[Meld256]

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 

[corleyer]

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

[lynnmarie219]

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!

[Corella]

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

[Suzie]

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!

[SjoDry]

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.

[KatieB]

  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!

[lynnmarie219]

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....

[Doxie]

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.

[drybrook]

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