Hi..I'm new here

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Regular Member

Date Joined Sep 2010
Total Posts : 26
   Posted 10/1/2010 12:36 PM (GMT -6)   
Hey I'm new to this site. Still tryna figure out how things work. lol :) Anyways...i was looking for sites where i can talk to people going through the same thing as me. And i found this one. I dont know what I'm suppose to write here. But am really just looking for support.

I am a 20yr old, female. I was diagnosed with SLE just before i turned 18. Although my initial symptoms have all but disappeared. I still am tired alot of the times. So i sleep alot. My family thinks I''m lazy. I try to explain to them that although I may look ok...I still have the disease. But probably "Out of sight, Out of mind" ...Because I'm not psychically in pain..You know?

So i was wondering...anybody else had to deal with this? And how did you approach it?

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/1/2010 3:20 PM (GMT -6)   
may I suggest The Spoon THeory just google it and it will help somewhat. Also are you being treated? I ask because treatment can help with fatigue.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Forum Moderator

Date Joined Jun 2008
Total Posts : 1470
   Posted 10/2/2010 7:29 AM (GMT -6)   
Hi there!!! I was 19 when I was diagnosed and now I am 23. I can't relate to the out of sight out of mind but it is close to the same thing as denial, which i struggle with big time I keep telling myself it isnt here all toughI know it is. I guess wishful thinking :)! I don't really have too much of a struggle of being too tired. Occasionallly when I overdo it I get that way. My big problem (at least to me) is the pain. my doctors thinks my kidneys are more important but hey...they don't hurt or give me a hard time that I can feel so I am of course more concerned with my joint. about the being tired...do you get a good nights sleep when you sleep? Or do you wake up a lot? Maybe you could try talkiing to your doctor about a sleeping pill. I know this sounds crazy but sometimes you arent getting that deep sleep your body needs which is causing you too be so tired through out the day and the sleeping pill will get you to that point :)

I agree with the spoon thoery. That is what helped my family understand as much as they could before i was hospitalized. Now we refer to things in spoons as well :)!

Well, i know I have rambeled a lot but just wanted to say really say hi and hope you stick around :)!
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Regular Member

Date Joined Sep 2010
Total Posts : 26
   Posted 10/3/2010 8:54 AM (GMT -6)   
Ok thanks for the suggestions. And yes I am being treated. but the fatigue can still cause problems for me..Not all the time..sometimes i have a good week sometimes i dont. And yes i do sleep good..(no waking up just about one time to go to the bathroom)

And the out of sight out of mind thing...was with regards to my family..not me..i know its there..I am past the denial stage.

But honestly I am kinda against the sleeping pills...Well all pills in fact...I just take these because I have no choice. and besides i sleep well...at least 8hrs a night

Will try the sppon theory, it sounds like its what i need and that it will be effective.

And hi back...hope to stick around too..
~The Happiest People Dont Have Everything, They Just Make The Bes Of Everything They Have~
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