[chilli]

so i have spent most of this year in bed with aches and pains and tiredness, but these last 2 days have been unbelievable.

i woke up yesterday feeling so weak but i got up and bathed and went to the shop, could just about carry myself there and back, felt like i was gonna collapse. i went to the doctors and couldnt even take the stairs and had to use the lift to go one flight. i have never felt soooooooo tired before, a real 'i cant even carry my own weight much less lift my spoon' kinda tiredness that just wiped me out. as soon as i got home i had to lay down for a few hours.

and i woke up this morning feeling the same way, but have managed to push through it and get up and dressed.

i tried to explain it to various family members but i guess they are just thinking that i am being lazy for being in my bed most of the time???

how do i really explain how tired i am, when i cant even find the words myself? i mean this kinda tiredness goes to my core, even my brain feels tired.

 

[sadieone]

Hi Chilli,

I'm sorry you have to experience this dreadful disease. The tiredness is one of the main indicators of the illness and it also indicates that you need to rest.
The simplest things wear us out and if we don't rest to recoop, it just gets worse.

I know it seems like we stay in bed all day everyday.............. and we do just about. But that is the nature of our disease.

I woke up this morning at 9am a little late for taking my meds but i went right back to sleep on the couch and didn't wake up until 1:30pm..

This is what some of us lupies do.

Go lay down and get some rest.

Take Care

 

[samour]

Hi Chilli

I have my own autoimmune diseases and suffer from a great deal of the same fatigue, now my daughter who has lupus is going through the same and much more. She looks wiped and has a hard time dragging herself around which is so not the norm for a 18 year old. She used to be into sports and so active and is a very positive person.

We were told to excercise, it seems impossibe, but we joined a gym last week and are dragging our sorry fannys to the gym. We are looking at it as mount everest. We are still waiting for the results but by all the specialist they told us this is the only way.

Hope they are right. I don't think anyone understands the same way as those who are going through it.

Hope you feel better,
Sharon

 

[neongirl]

Chilli,
Maybe this will help with the description; Just before I was dxd, my gp, thinking I had ringworm, prescribed the drug Griseofulvin (very bad drug for Lupies as it increases the symptoms of a flare), I was already experiencing pain and fatigue on a grand scale, but had no idea yet that I had Lupus or was flaring. Anyhow, I took the drug, and within 2 hrs. the fatigue was so bad that I couldn't even lift my head off of the couch (no kidding).......I remember laying there and thinking "what if the house catches fire? I'm only 5 foot away from the door, but there is no way I'm getting out." 2 wks later I saw a rhuemy for the first time and when she asked my symptoms, I told her I had "death fatigue", after looking at me like I was a brick short of a full load, she said "what?!?" I then explained to her that if I ever had to evacuate, even a few feet, to save my own life, I couldn't and would therefore die. She seemed a little shocked by my description, but it was the only way I could think of to get across to her how bad it was:sad: .