View Full Version : What is your day to day like in and out of Remission?

04-23-2009, 05:25 PM
I was cursios to see what everyone life and day is like in both when your lupus is active and when you are in remission, and when your in a flare? So ill start....


* extream fatigue (17-20 hours of sleep per day)
* joint pain in my knees to the point where i cannot walk
* mild fever constantly
* occasional butterfly rash
* overall crummy feeling


*slight fatigue (usually sleep 10-12 hours a night)
*I cant walk or stand for long periods (amusment parks are out of the question and vacations are hard)
*my muscles get sore easily (I feel like im extreamly out of shape even though i am only 21 years of age.)
*mornings are very difficult for me (this is why i work swings)
*i can only work part time
*I have to pick and choose what i do (Laundry or vacuming) I can never do all the house work in one day i just get to drained.
*get worn out very easily.
*Get sick very easily (cold/Flu)

If i dont take precautions I.E lots of rest, relaxation, i start feeling crummy and by crummy i mean my shoulders start to tense my muscles feel weak and tense up my head starts to hurt i feel exhausted and tired and start running a small fever.


*fatigue (10-12 hours of sleep per night) plus a 2-3 hour nap in the day.
*mild joint pain
*muscle aches
*flu like symptoms
*intense feeling of hunger (strange right)
*cant really do much other then lay on the couch.

I am so interested in hearing what everyone elses are like :yes: -Angie

04-23-2009, 06:37 PM
Hey Angie,
I'll bite the hook and go.
I'd say everything is generally the same for me except my remission time. (although my Doc. says there is no such thing as remission for ppl with Lupus) When I'm in "remission", I feel awesome! Normal. For the last two months I was energized, inspired, and active. I was doing a workout everyday that included 2 miles on the tredmill!! Not much pain at all. I was mentally sharp, and coordinated. Working on Art pieces until 2 or 3am with gusto!! (And I think this feeling causes me to get wreckless with myself. I forget to rest, and I start overbooking my activities cuz I feel like I can do anything!!)

But last week I woke up one morning like I'd been hit by a truck. I imagine normal ppl would feel like this if they drank a bottle of wine, a 6 pack of beer, and then topped it off with champagne!! All the symptoms at once. Migraine, dizziness, nausea, confusion, extreme joint pain in all the joints, muscles too weak to walk myself to the bathroom. For a few hours I kidded myself thinking that surely I'd been poisoned somehow, or had a bad flu. But then the reality of it sunk in, and here I am again trying to recover from this flare over a week later.

Now I'm clumbsy, walking like I'm on stilts, walking to the end of my driveway leaves me outta breath and needing to sit down. I'm doing my dishes in stages cuz I can't stand up that long. My husband doesn't trust me to drive the car, and I'm left with no artist drive at all. So, I'm holding out for the next remission, reading the board for all the wonderful, inspirational, kind, and loving people that are here.

04-23-2009, 07:03 PM
My situation to close to Angie. its just never good.