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: Liz, 45-54 Female (Patient) Published: October 18

I was diagnosed in 2011 with systemic lupus erythematosus (SLE) after returning from a trip to Washington with sightseeing. I started getting swollen hands and feet, joint pain and off and on, low fever, my left shoulder was in pain when I would lay in bed, I couldn't even turn over or get out of bed it hurt so much to move but after moving around it would ease off a bit. Even my ankles would hurt in the morning getting out of bed, plus when I'd take deep breaths I would get pain under my left breast. An MRI showed I had some fluid in my left lung so my doctor sent me to a neurologist. He had me go for blood tests twice before diagnosing me with lupus and now I am taking Plaquenil 2 times a day. I decided to not let this illness get me down and whenever I have that energy I take advantage of that time.

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Published: November 07

At the onset of my lupus, the only symptom I had was joint pain. Each morning, I'd wake up with pain in a different joint. One day, my wrist, the next day my knee, then my fingers, my elbow, etc. The pain would last all day, and it didn't matter if I took Tylenol or Advil or anything. It was there until I woke up the next morning with a different sore joint.

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Comment from: chiquita, 45-54 Female (Patient) Published: March 27

I have lupus and fibromyalgia. My hands and feet are so dry, I tried so many creams nothing helps.

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Comment from: Eea, 55-64 Female (Patient) Published: December 16

I had debilitating pain and extreme fatigue.

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Comment from: Lisa, 45-54 Female (Patient) Published: July 26

I am 52 and was just diagnosed 3 months with lupus. My symptoms actually started about 2 years ago and I attributed them to arthritis. I have experienced extreme fatigue and pain and stiffness in wrists, hands, ankles and feet. I am an OR nurse and attributed these symptoms to being on my feet all day. One day I could barley get out of bed, could not hold a pen and my feet were extremely stiff and painful. One of the surgeons I was working with got me an appointment that day with a rheumatologist. I am now taking Plaquenil and getting extra rest. I still have pain, especially in my feet, but not like it used to be.

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Comment from: RitaRenee, 25-34 Female (Patient) Published: April 24

My symptoms included extreme fatigue, swollen lymph nodes, loss of appetite and weight, shortness of breath, sharp pains in my chest, fever, skin rash, and extreme inflammation of my hands and feet. I could barely walk or hold a pen. I also experienced hair loss. After three months of symptoms, I was finally diagnosed with lupus.

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Published: July 18

My symptoms are muscle ache, swelling in the feet, joint area, stiffness fatigue and excessive flaky scalp.

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Published: July 18

First symptom was falling hair, which I ignored as being due to shampooing with hard water. Subsequent symptoms started with pain in the joints of fingers & wrist, especially early morning, would become better in about 2 hrs after waking up.

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Published: July 16

I had a really low white blood cell count at a recent trip to the hospital. I had a butterfly-like rash on my face and then a really bad rash on my body. The doctors asked me if I had ever been tested for lupus, and of course I said no. I told them that my regular doctor was treating me for rheumatoid arthritis. They said that should have been a red flag because I was only 26 at the time. I have sores that I get on my tongue and my throat all of the time and my joints in my wrists and ankles swell a lot. They ran a few tests while I was in the hospital and came to the conclusion of systemic Lupus.

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Patient Comments

Viewers share their comments

Lupus - Experience Question: Please describe your experience with lupus.
Lupus - Treatment Question: What kinds of treatment have you received for your systemic lupus?
Lupus - Diet Question: Have dietary changes helped with your lupus symptoms and signs?
Lupus - Prognosis Question: Please describe your lupus prognosis.

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