Newbie alert!

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; extreme photosensitivity to skin starting last year; 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?

Thanks,

Carol

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!

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

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