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New Member

Date Joined Sep 2006
Total Posts : 6
   Posted 4/4/2009 7:54 PM (GMT -6)   
Hi, everyone.  I am new here.  I am currently undiagnosed, but I do think I have signs of lupus.  I do meet 4 of the 11 criteria: 1/2 butterfly rash; blush extreme photosensitivity to skin starting last year; cool arthritis; positive ANA.  It does hurt when I breath in deep and I will be going to a cardiologist soon.  I also have polymyositis, however, my tests for that are currently negative (or only very slightly positive) except Jo-1 antibodies which usually also indicate inflammation of the lungs.
I am taking plaquenil (200 mg) as well as fish oil pills, meds for my depression (Cymbalta, Wellbutrin), synthroid (generic) which I just started last week for a slight hypo-thyroid, vitamins b-12 (Sub lingual) and b-6, low-dose prednisone, and off hand not sure what else. That might be it.
These "lupus" symptoms appeared over the past year.
I have zero energy on most days. Since last year, I have not felt good. I haven't had any periods of remission. I refuse to go on high dose prednisone (not that anyone asked me too).  I did that with my polymyositis and my body hasn't been the same since.  I would do it if things were quite serious and my doc insisted on it.
I have many questions.  But instead of posting something book-length, as I can tend to do, I'll just start off by asking one or two.
First how do you deal with fatigue?
Last night (Friday) I went to bed probably around 11PM and didn't get out of bed until 5PM today !!!!!  I did it on purpose, actually, trying to rest my body, I have no problems sleeping especially with the fatigue. I told my doctor I feel like my body is poisoned.  I guess it's all the inflammation.
Is anyone else working full time (still). Do you fear that you won't be able to work forever? My company just offered Long Term Care insurance and I'm taking it, although it's expensive (the rate of course is based on your age, I'm 45). 
By the way, just for FYI:  I am not married, no kids, live alone, am not 100% mentally healthy (not full blown depression, but think rather negatively and I am just not myself at all).  I have two cats.  :)      I try to get out. I don't date.  The negativity in me says: who would want to date a slightly overweight woman with all these mental and physical health problems?

Polymyositis & Jo-1 antibodies since 2000; Depression on/off since 1988; hypothryroid 2009; currently undiagnosed with signs of lupus

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 4/4/2009 8:34 PM (GMT -6)   

Hey Carol! Welcome to healing Well! I love your Newbie alert title! it made me laugh :). I don't have a lot of great advice to give but I know there will be others along to help you with that. I know what you mean about who would want to date someone with ... except mine are a little different, more like who would want to date a overweight, physically ill, zebra strips all over body...but the wonderful people on here have told me that its what is inside you that matters the most, that if they really love you, then they will love you know matter what you look like. So I am praying for Mr. Right to come along and now I am just waiting and trying to keep myself well.

I still work full time and one of my biggest fears is not being able to continue to work full time. I try not to think about it and have learned to take one day at a time! I do everything I can to prevent flare ups and try to stay stress free so hopefully I will be able to continue my job but if something where to happen and I couldnt continue, there was a reason for it, I just have to wait and find out what the reason is for.

 I know you will love HW and hope you stick around for us to get to know you better!



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C

Regular Member

Date Joined Mar 2009
Total Posts : 48
   Posted 4/4/2009 11:37 PM (GMT -6)   
Hi Carol,

I kinda know what you are going throuh. I'm 31, single, live alone, I have one cat slightly overweight myself ( but that's just means we are extra squeezable!), not really mentally well either, I lost what would have been my first born in October in my 7th month, i couldnt hack and i literally picked up m life and moved to another state. I have the wastebasket of these autoimmune diseases MCTD. I have had rheumatoid athritis for 20 years and just found out about this other crap recently. I am on sleeping pills, anti inflammatories and painkillers (vicoden is a gift from God). The fatique is hard to deal with sometimes because I dont feel like i fall asleep, I feel like I pass out. I am constantly tired no matter if I get 2 hours or 12 hours of sleep. But whatever!

I feel encouraged by being apart of this HW community. They are a wonderful resource, so use them!

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/5/2009 9:47 AM (GMT -6)   
Hi Carol!
Welcome newby! I"m married, no kids, one cat.  I"m 35, and slightly overweight:)  I love how these posts are starting off. LOL.  I work full time, but I'm self employed. I'm a photographer with my own business.  So I can make my schedule fit me perfectly (most of the time). My lupus is pretty much dead quiet these days which helps me to work as much as I do.  My issues right now are 100% Fibromyalgia.  I stopped working when I was first diagnosed in order to give my body as much rest and recovery as possible.  I collected disability for 2 years during that time. It was the best thing I did.  I was able to get into a remission in the late stages of those two years, at which time I started up my business! 
I think you're wise to give yourself some time off. 
For the fatigue.  I wish I had some answers for you.  I'd like to know what the magic pill is for that too.  My Fibro makes me fatigued a lot.  I know the Lupus is bad for that too.  Just give yourself the rest your body wants.  You slept a long time, 18 hours!  Your body is telling you something there!  Don't deny what it wants.  Go with it!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 4/6/2009 6:54 PM (GMT -6)   
Welcome njcat,

I don't have anything to add to the advice above, but wanted to welcome you to the forum.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 4/7/2009 6:00 PM (GMT -6)   
Well, i'm 37, single, no pet (xcept 2 nieces and 2 nephews! lol) and more than slightly overweight! Welcome to the forum. I certainly hate that you are traveling this road! Hope you find some answers, know you'll find lots of support. Judy

Regular Member

Date Joined Mar 2009
Total Posts : 98
   Posted 4/8/2009 7:28 AM (GMT -6)   
Hi njcat,
I too have terrible fatigue and must sleep endless hours to get relief from the flairs. I think often about whether or not I can keep my job, when I am at my worst. My heart hears your heart. I am presently on FML and working 4 days a week. This does not sit well with my Supervisor, but it is the law and my doc approved it. Can you get on FML during a flair? Now on to the dating thing. I too think, "I'll just distance myself from the whole scene." Then my dear friends tell me to take a chance. It's a long hard road, but know you are in good company now and no longer alone and misunderstood. God bless, Tammy

New Member

Date Joined Jan 2009
Total Posts : 10
   Posted 4/8/2009 8:47 PM (GMT -6)   
I know how you feel, I'm single with two boys, one married and one almost there. Dating is hard, between not feeling well so often or just being too fatigued to care. I'm extremely under weight due to digestive issues from lupus. I work full time and thankfully can adjust hours to some degree. I've tried provil to help the fatigue, but that has issues of it's own. Depressive periods come and go. I tend to set goals for survival and life. If all goes as planned I can retire in 8 years with a decent retirement and that seems so far off. I constantly remind myself that life isn't good in of itself, but is good or bad if I choose it to be. Take care
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