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: Katsch, 35-44 Female (Patient) Published: December 13

I have had symptoms for the last 10 years. The most dominant symptom is being sensitive to sunlight. I can't even drive or go outside without putting on sunscreen and wearing long sleeved shirts. I take extra vitamin D and use face cream with sunscreen all the time. My hair has thinned out, and my malar rash makes my face look like I have bright red blush on. I have lost control of my right hand from joint pain and muscle loss. I drop things all the time and have taught myself to be left handed. I can no longer pick up my 3 year old due to arthritis in my spine. My feet and hands swell all the time and the fatigue feeling hangs out all day. I have lupus, lupus does not have me. I may have to learn to do things different but life I will live.

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Comment from: Marisimo, 35-44 Female (Patient) Published: May 01

I"ve been diagnosed with lupus 4 months ago. My ANA is negative but I was confirmed with a skin biopsy. I have dry eyes, dry mouth, ulcers in mouth, pain in ankles, knee, toes, nail bed is red mostly all the time and mood swings. I"m on Plaquenil twice a day, hoping to improve and work full time but some days I feel I can"t do more.

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Comment from: Mookie, 55-64 Female (Patient) Published: March 26

My blood tests showed that my ANA was bad and my GFR was 53. What I was being seen for was restless leg syndrome (RLS) and sciatica which is so bad I can"t even sit, stand, lay down, do anything anymore because of the pain and jumping jerks of my legs. I"ve had tests and there"s no muscle damage and a little nerve damage on my left foot. The doctors also found that I was deficient in B12. I have these little pea like nodules in my legs especially on the inside of my calf under my knee. There"s no neuropathy and my legs turn bright cherry red and then swell from half way down my calf to my ankle and then other times it is fine. I"ve felt so bad for so long now that I need relief. My anxiety and depression are off the charts, my husband died 2 years ago and we were together for 43 years. My body will just ache all over like I have the flu and I walk bent over because I hurt so bad I just can"t do anything for days.

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Comment from: dab215, 19-24 Female (Patient) Published: February 20

I strongly suspect I may have lupus. I am a 24 year old female. I have been seeing a doctor for costochondritis pain for well over a year and have pain in my knees, wrists, shoulders, hips, and, recently, my jaw. I also have extreme fatigue and vitamin D deficiency. I get terrible rashes (not a butterfly rash though). I lose a lot of hair daily. My doctor suspected rheumatoid arthritis at first, but my ANA was negative. My doctor is re-testing me tomorrow to see if there was any seroconversion going on, but other than that I"m lost.

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Comment from: LuluLupus, 45-54 Female (Patient) Published: February 06

I strongly believe I have lupus. I have present all the symptoms and after minor things surfaced over the years, this January 2014 it hit me like a brick. I have aches, pains in hands and knees, Raynaud's, headaches, fatigue like no tomorrow and anemia. My ANA is negative and I am nowhere at the moment. I'm seeking 2nd opinion.

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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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Patient Comments

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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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