How do you describe "our type of fatigue" ?

[Katmandu]

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

[warmwaters]

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.

[Blue Kat]

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. 

[lynnmarie219]

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!

[H2Ocolor]

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

[beverley]

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

[bloodless]

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.

[bjnc]

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

[galaxygirl]

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. 

[Scottietottie]

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

[Koochy]

 
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.

[Prairie Gal]

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

[Bernice]

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.

[Stinker]

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

[louise]

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.