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: sfruth, 65-74 Female (Patient) Published: February 28

My initial symptoms of lupus were swelling in my hands, finger joint overgrowth, stiffness and loss of mobility. About 8 months later I developed Raynaud's, and 1 1/2 years after the initial symptoms, developed photosensitivity. When I finally saw a rheumatologist, my ANA was highly elevated (1:1280) and my DS DNA was slightly elevated. While working in a hospital as a nurse, doctors I talked to about my symptoms did not think at all about autoimmune disease as the culprit.

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Comment from: carolkirkoconnor@yah, 55-64 Female (Patient) Published: January 13

I had fatigue for over years. I had to leave 2 jobs as I just could not keep up with a 40 hour work week. I am a registered nurse and was diagnosed with fibromyalgia, chronic fatigue and restless legs. Finally in 2012 I became confused when I had painful sores in my mouth. I ended up in 3 different hospitals before the lupus diagnosis. I ended up in the burn unit for the lesions and was hospitalized for 4 months and am in rehab for a month. I had lupus lesions in the brain and lupus cerebritis. I had 6 months of chemotherapy, now 2 years of oral chemotherapy and plaquenil. I still have fatigue, joint and muscle soreness. I am still disabled, but much better to have a diagnosis and a plan and a great, responsive and caring rheumatologist.

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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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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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