What were your symptoms when you were diagnosed?

i have been reading up on Lupus and I know that all symptoms are different for everyone. Can anyone offer their fist symptoms when finding out they had lupus.  thank you!!!!

Flu-like body aches, painful joints, rash across face and chest and back of hands, sun sensitivity (causing rash joint pain and fatigue) debilitating fatigue, oral ulcers, hair loss, dry mouth, erratic and heavy periods, painful bottoms of feet, headaches

What exactly are oral ulcers? Are they like mouth sores/canker sores? Do they hurt?

Positive ANA is found through bloodwork. You can have a psoitive ANA and have lupus or not have lupus. You can also have lupus with a negative ANA. It is not a definitive test. A diagnosis is tricky and a trained rhuemy will need time to do some detective work. My lupus symptoms were as follows:

Extreme fatigue; itchy rash all over arms, chest, legs and back; low-grade fever; hair loss; protien in my urine; extreme sun sensitivity; painful joints; inflammation of fingers, wrists, and ankles which caused carpel-tunnel like symptoms when I slept; and frequent thrush (mouth sores).

It seems like a lot of symptoms. Many of the symptoms came on slowly and then the fatigue became worse than anything I have ever experienced. When I finally went to the doctor, they found out about the low-grade fever, urine protien, and the high inflammation markers in my bloodwork. With all of this, I am still not testing ANA positive but my family doctor has records showing me ANA positive about eight years ago. In looking back, it seems that I may have had lupus symptoms since I was about 17 years old. I suppose that I went into numerous remissions and, therefore, had trouble coming up with a diagnosis.

Audry Ann, How old are you now?  You mentioned that you had inflammation of the ankles.  How badly was this inflammation?  Did your ankles look like a pregnant woman at the end of her pregnancy?  That's what my brother's looked like before he was put on the steriods.  I have heard of lupus but this is all knew to me.  Are you living a pretty normal life with this disease?  Do you know anyone close to you that also has it?  How are they handling it?   I hate to hear anyone that is sick.  I'm sorry you have to live with this.  Again, I'm sooooo uneducated about this and/or any autoimmune disease.  I am dreading his test results.  He hasn't gotten the blood work done yet.  Now can anyone answer this question for me, what do you all think?  My brother has the swollen ankles which the dr. said could still be a form of arthritis, he had the dry eyes about 6-8 years ago really badly but hasn't suffered too badly with that anymore and he is definitely prone to getting canker sores on his lips(fever blisters).  now my question is, when he gets his blood work done, what answers doyou think he'll get?  From what I am hearing from you guys is that it's soooo hard to diagnosis.     thank you all for responding.

My symptoms were:

extreme fatigue
joint pain
mouth sores inside mouth, roof & gums
headaches
sun sensitivity
nausea
diarrhea
hair loss
Did I mention extreme fatigue????

Positive labs -- ANA, Anti-SSA, low C3 and elevated SED

fever blisters and cancer sores are quite different. then there are some lupus mouth sores that are a third kind of different. the best thing to do with sores (and rashes) is to take a photo (as close up as you can get) and show it to your doctor. they will be able to tell the difference -- this is one of the cases where "a picture is worth a thousand words" is definitely true!

Hi, again, jdeet! I am 46 now and, by the time I had made it to the level of symptoms when I received a diagnosis and, then, treatment, my ankles were quite swollen. In looking back, my symptoms started at about age 17 and I was 40 when it became apparent that I actually had something more serious. I suspect that I had many remissions in that time period and this is typical of lupus. There is not really anything preventative your brother can take to prevent full-fledged lupus - at least not anything I am aware of at this time. Like Rosie says, we all fight this until the last moment and try to maintain as normal a pace as possible. It took three years (age 43) for me to receive a diagnosis and treatment.

Currently, with the help of medications, I can keep a full-time career and enjoy some personal fun. I am vey careful to pace myself but, if I push too hard, I really pay for it in pain and extreme fatigue. My husband is very supportive and my children are both in college now so this is all a possibility for me. I can tell that I cannot keep up even this pace for too much longer. I hope that I can make it four more years so that I can retire with my full 30 years in education.

As for your brother, I cannot tell from your description if he has lupus. If he does have the start of lupus, he needs to keep a journal of his symptoms and keep at least a yearly appointment with a rhuemetologist to keep on eye on the progression. Every lupus patient is very different. A rhuemy will appreciate detailed notes from him to help in the detective work necessary for a diagnosis.

Good luck!

Thank you AlwaysRosie, this was very helpful.

Now I'm tetering on Lupus, Fibromyalgia, Lyme Disease and Lymphoma


Needless to say, I'm scared.

hi jenisis, i started with a red blotch on my forehead it was tiny and i didnt think much of it , it grew slowly and then made 2 blotches. i would have leg pains so bad that it felt like a sprang just lasted a few days at a time. that was about 5 yrs. ago. i went to a dermy who did a biopsy and said lupus, then a rhumey says no, all blood work has been neg. my symptoms have gotten worse. i have corpule tunnel in both hands, i get very tired, my legs hurt mainly at night, my hands tingle and sting, i have a red dtty rash on my upper chest, i have pain in my neck.i am just learning to not push myself to hard.i still have no dx. it can be confusing.good luck to you and keep your head up,sheshe

For me I couldn't walk anymore, I found my self not being able to get myself up out of bed, tried all the time. Then I got a letter from the Red Cross telling me that I could that donate my platelets anymore. So, I carried myself to the doctor for a check-up and here I am 5 yrs later.

Take care of yourself