Lupus dx all s/s, labs normal? anyone else

2006 diagnosed with Lupus after one year of having symptoms seeing many many doctors . ana was positive at that time um sed rate was normal but crp up. facial rash migrating joint pain migraine headaches so severe that send me to the ER with non stop vomiting horrible pain and loss of vision, symptoms have gotten worse over the years adding and neurological problems I do have degenerative joint disease and my neck with some spinal cord compression however fairly mild . symptoms have become so bad with neurological and pain and fatigue that I’ve had to give up working as a nurse after fighting so hard for my diploma and nursing license. so what my question is is there anybody out there with this strong of symptoms and debilitating pain and neuro symptoms that has normal lab work? I feel like a crazy person I have all the symptoms and when I go to the doctor on paper I look totally healthy

Oh I am so sorry about your nursing! Oh, I've worked a bit as a nurse's assistant. And I started a few pre-req classes for nursing. I failed bio, so I stopped. And then pain progressed, etc.

Yes, I tested ANA pos a few months ago. I've had chronic pain since I was about 10. I am now 46. My mom had all signs of lupus but never Dx for it. My daughter has lupus. The rhem doc said, "Most people have pos ANA, But if you are concerned, see me in FIVE years for a re-test."

Lupus seems to be very very difficult to get a solid Dx for. I am not going to just dismiss it. I try to just treat myself with herbs, etc at home. If I get worse, the Lord will open up doors for another doc.

This is how I felt for years, all tests were normal but my body was saying something completely different (always in pain, always tired, body felt like a rock all the time, couldn't sleep, etc.). Never got dx for anythign even though ESR was slightly elevated. Finally in about 2006 dx with fibromyalgia but never really got better. Just received dx with lupus Feb 2013 labs finally started showing elevated ESR, positive ANA, VIT D deficiency and inflammation in the eyes. Don't give up we know our bodies better than anyone.

Yep- my labs are frequently normal and I have had lupus for 40+ years. Even in flares at the beginning labs fairly normal although the flares went on to life threatening episodes. So now I stay on maintenance prednisone and mult other meds in spite of normal labs and that seems to work I too am a nurse and spent many years at administrative jobs as my symptoms wouldn't allow clinical nursing. There are a lot of jobs in nursing where you can work from home such as case manager- you might want to look into other roles if you wish to continue using your nursing skills and knowledge.

My symptoms and pain are not as bad as yours, but I'm mostly normal on lab work. I had a lot of neuro symptoms (migraines, numbness/neuropathy, etc.) and I had all sorts of joint aches/pains and severe fatigue. On lab work, I only have a positive ANA. Well, that was as of a year ago. I need to get more labs done so maybe something has changed. When I was first being tested for lupus, my primary care doctor was telling me that I was fine and it was a "virus" causing all my problems. Went to the rheumy and he told me that while I might not have really wacky blood work, I sure do have everything else someone with lupus has. He said it's just a matter of time before I get the abnormal blood work.

I've had positive ANA's and negative ANA's. However always elevated sed rate, vitamin d diffiecency, rashes, anemia, low level fevers, pleurisy, fibro, tested positive for hashimotos and sjogrens. Also APS.. I was in the middle of one of the worst flares I had ever had, joint pain swollen, could barely walk couldn't lift my arms over my head to change my own clothes, fever etc... My rheumy was on vacation, saw someone else who ran tests that all came back somewhat normal and promptly told me I didn't have LUPUS... despite my physical symptoms and the fact that I literally coulnd't sit up straight from pain I was in .... needless to say never went back there. My rheumy put me on steroids, and of course like magic my symptoms began to subside...

Thank you all so much for your replies. It’s so nice to talk to people who understand :slight_smile:

Wow I keep reading your replies over and over it means so much! I have never talked to anyone else with lupus due to living in a small area and there aren’t any support groups of any kind. this is the first time I’ve found online site that really seems to fit thank you thank you.

Always here for one can truly understand, but us.

Yes, for years after initial diagnosis and treatment with prednisone, my labs all returned to normal even though symptoms remained and have fluctuated over the years -- both pain and neuro symptoms. Initially, ANA was positive, sed rate elevated, anticardiolipin antibodies positive, I was anemic, and I don't even remember what else, but all returned to normal after being on prednisone for a while. After years of normal labs, recently ANA has become positive again even though the other labs are still normal. Over the course of the last 12 years or so, I have seen three different rheumatologists, and all have told me that the labs will fluctuate, and there won't necessarily be a correlation between lab work and severity of symptoms, none of them seemed to think I should be feeling fine because my labs had returned to normal.

Holly, that sounds so much like me! My symptoms started with fibro, the neuro issues and my rhuem was telling me go to a neurologist and he would send me back to rhuemy.
My Ana is positive, but everything else is neg, but I feel horrible all the time! My rhuemy won’t diagnose me with lupus though, but she is giving me lupus treatment.