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: 35-44 Female (Patient) Published: March 20

I'm 37 year old living with lupus for a year now. It seems to have happened overnight starting with stomach pain, body aches, chest pain, heart palpitation and this weird feeling like I want to pass out, for a time, followed by extreme fatigue. It feels like this has taken over my life and makes me angry. My new doctor said my blood work now doesn't show lupus but I'm still on my medicine hydroxychloroquine. I'm trying to say positive.

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Comment from: nmbfan, 25-34 Female (Patient) Published: March 18

My whole life I had always had horrible fatigue and never slept well. At 17 I developed horrible rashes and went to see a dermatologist and he tested me for lupus because of my family history. I have debilitating fatigue, dry eyes and mouth, skin issues, fibromyalgia, depression, anxiety and Raynaud"s. I"m 31 now and I haven"t been able to work full time since 2011.

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Comment from: jmeilleur, 45-54 Female (Patient) Published: March 14

My symptoms of lupus are dry eye, muscle ache, stiff joints, headaches, spasms mostly in my right back calf, feeling of being very cold especially in my hands and feet, loss of appetite, feverish at times, feet, wrist, knees and back sciatica and especially right side of ribs are constantly stiff and achy.

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Comment from: Diag2007SLE, 45-54 Female (Patient) Published: March 13

I had severe rashes on my chest that looked like a v shape. My nail beds were red and inflamed. I had rashes on other parts of my body from time to time. I lost so much weight very quickly and my hip and groin were in excruciating pain. I had and still have bilateral ankle pain, and my wrist and bony part of fingers ache. The worst part for me with lupus is the fatigue.

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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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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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