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: greatwife, 35-44 Female (Patient) Published: October 22

My early symptom at the age of 16 was joint pain. It felt like I was sleeping under an air conditioner and was very stiff. My mother has lupus, which made it easier to diagnose. My biggest flare up now is skin rash from the sun. It was most prevalent during my pregnancies. I have a wonderful doctor who has kept me healthy with the right mixture of drugs. I am now 36 with two healthy children and a wonderful husband who supports me.

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Published: September 11

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: Loulou, 55-64 Female (Patient) Published: June 10

Mostly I was always tired no matter how many hours I slept, and I had a slight fever most times. It was very depressing at the age of 30 (I am now 60) to be incapacitated this way. I knew though when I was going to have an episode because there would be a sharp burning sensation going up my spine (I found an old article about this a long time ago) but it is true for me. My condition has been in remission for about 15 years (no medication) - I continue to exercise and eat right and I feel great.

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Comment from: Bubbles1968, 35-44 Female (Patient) Published: April 26

I was only diagnosed with lupus about four months ago. For three years, I have had various symptoms: rheumatoid arthritis, night sweats, insomnia, joint pains, swelling erratic periods, stomach pain, shortness of breath and hair loss. In December of 2009, I had a plaque-like rash. It started on my chest, but within hours, I had a butterfly rash across my entire face and then my whole body was covered with itchy, sore lesions. Eventually, I saw a dermatologist who did skin biopsies and blood tests. I live in England, and the doctors here don't know anything about Lupus.

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Comment from: jpuppychow, 35-44 Female (Patient) Published: April 16

When I first had problems with lupus, I would have continual problems sleeping through the night because the hip pain would keep me awake. I also started losing clumps of hair in the shower.

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Comment from: JH, 55-64 Female (Patient) Published: May 12

I am a 59 year old female and I was just diagnosed as having Systemic Lupus. I have had joint pain (hip and ankle), ringing in ears, numerous cold sores ,yeast infections, Shingles (twice) insomnia, butterfly rash, hair loss, panic attacks, anxiety, headaches, dry eyes, sores in mouth and colds that last for weeks. I spent the last year in the doctors' offices and it wasn't until I went to the dermatologist with the hair loss that he ordered the proper blood tests to confirm my condition. I live in Deland, Florida and wish I could find a support group in my area.

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Comment from: teran, 35-44 Female (Patient) Published: April 09

Today my doctor ran some tests on me for lupus. I have had a rash across my nose and cheeks for a while. I get rashes all over for no reasons. The lymph nodes on the back of my neck stay swollen. I am tired all the time and my temperature stays at 99-101. Numbness and tingling in my feet are so annoying. To add to all of that, I have degenerative disc collapse, asthma, COPD, high blood pressure and stay sore all over. To top it all off, I am allergic to steroids, and most antibiotics and anti-inflammatory medications.

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Patient Comments

Viewers share their comments

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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