Patient Comments: Lupus - Symptoms

The symptoms of lupus can vary greatly from patient to patient. What were your symptoms at the onset of your disease?

Comment from: Neeka, 45-54 Female (Patient) Published: March 01

When I first found out in 1995, 15 years ago, my symptoms were: Aching pain in all joints and swelling in my hands. It felt like something was eating away at the top of my finger tips. Also, I was feeling tired all the time, though I didn't know what it was. I went to see a doctor and the Winston Salem School of Medicine, where I was told that I have lupus. They treated me with prednisone and other anti-inflammatory meds. Good luck to all of you.

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Comment from: Karen, 45-54 Female (Patient) Published: January 15

I have looked at so many sites that are confusing. This is an excellent site.

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Comment from: angkaytab, 35-44 Female (Patient) Published: January 08

I was diagnosed about a year ago with Lupus. I have been suffering off and on for about 20 years with different symptoms. It started with extreme fatigue and a weird numbness on left side of body. Then came the panic attacks, chest pain, joint pain, severe rashes and swelling from the sun, strange rashes covering my back, but mostly FATIGUE. Over the years, I've been told I had Lyme disease, Crohn's disease, Epstein Barr, mono, hypothyroidism and hyperthyroidism. At one point I even went to a psychiatrist because doctors couldn't find what exactly was wrong and I thought I was crazy.

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Comment from: GERI, 35-44 Female (Patient) Published: December 29

I was diagnosed five years ago after I went to a doctor with all sorts of ailments such as joint pain, fevers, skin rashes, heart palpitations. The doctors I was seeing at first made me feel like I was a hypochondriac. I finally found a doctor in Johannesburg who got me back to my old self in no time and now, I have not had a flare-up in about three years!

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Comment from: Shegufta, 25-34 Female (Patient) Published: December 29

I used to suffer from fever and malaise and shivering whenever I had exams and I was treated with broad spectrum antibiotics because the cause was always undiagnosed. I used to suffer for at least a week. Occasionally, I had swollen eyelids. I sought help from nephrologists and they finally diagnosed lupus.

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Comment from: bcortmann, 45-54 Female (Patient) Published: December 10

Before I was diagnosed with lupus, I had frequent viral or bacterial infections, followed by night sweats and fevers. Antibiotics didn't seem to help. I also had joint pain and sever mouth ulcers. I also had dry eyes and a dry mouth as well as numbness and tingling in my hands. I had fatigue to sever that I just wanted to lie in bed. I started reacting to sun exposure, followed by a rash on my face, neck and chest. I even developed panic attacks and ringing in my ears. All in all, it took three years to diagnose lupus for me.

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Comment from: andagz, 45-54 Female (Patient) Published: November 30

I first began having "odd" symptoms approximately 5 years ago. It first presented as flu-like; chills (no fever) achy joints and a strange redness on my chest. The red area was in a V pattern. The first flare was by far my worst. I have had these symptoms on and off all this time. I tested negative for lupus up until this year, and now my tests come back positive for lupus. My symptoms have also varied from rashes to muscle and joint pain, hair loss, fatigue, loss of libido, sun sensitivity and sleep disturbances. Don't stop looking for an answer! It's not "all in your head"!

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Patient Comments

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Lupus - Treatments Question: What treatments have been effective for your lupus?
Lupus - Experience Question: Please describe your experience with lupus.
Lupus (Systemic Lupus) - Prevention Question: What prevention measures do you use to avoid getting lupus flares?

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