Just diagnosed

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New Member

Date Joined May 2013
Total Posts : 3
   Posted 5/14/2013 11:32 PM (GMT -6)   
After 10 years of orthos, neuros and rhuemys, I finally went to a gold standard clinic and was diagnosed with antiphospholipid antibodies and mild systemic lupus. Finally a diagnosis! I'm relieved and now (for some reason) even more symptomatic. The scripts were baby aspirin and plaquenil and my pain has significantly reduced in two weeks. But my fatigue, headaches, and temperatures vary 4-8 times a day.

I used to be a fully functioning adult (I'm 54). I can't imagine working at a job like this. Can one qualify for disability with mild lupus?

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 5/15/2013 2:42 AM (GMT -6)   
If it affects one or more major organ of your body.

You know you can apply for short term or long term disability and use it for really bad days.
That's what I'm living off of right now while I wait for my SSDI to get approved. I was told mine was moderate lupus. If this is moderate I sure don't want mine to progress to severe anytime soon.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 5/15/2013 12:49 PM (GMT -6)   
I have frequently found that when the pain is at it's worst, other symptoms can be milder (fatigue, headache, etc.) and vice versa - as in the fatigue is practically disabling, but the pain, swelling, is milder. It's a confounding condition for sure. I know it's a full on flare when everything is acting up at once. My temperature fluctuates regularly also - especially in the late afternoon into evening, flare or no flare.

As for disability, you may be in a flare right now that is making your job seem less do-able. I'd give the Plaquenil time to take full effect. That takes anywhere from 3-6 mos. or even longer. For me, the biggest benefit was in the fatigue department, but also general pain. That said - if you really don't feel any better after 3 mos., I'd consult with your doctor (or sooner if things get worse).

Sorry you've struggled for so long without a diagnosis - but hopefully things will get better very soon!!


New Member

Date Joined May 2013
Total Posts : 3
   Posted 5/16/2013 12:03 AM (GMT -6)   
Thank you for your responses.
I do feel like every day it's a new symptom. Right now, as I write, I am sweating bullets, while my temperature will be just slightly above 97 degrees. I, like many on these forums have a 96.4 normal temp.

One more question for lupus and Hughes sufferers. Does anyone have a "burnt tongue" symptom. I've had a burnt tongue on the tip of my tongue for 5 months.
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