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: Mhowald, 35-44 Female (Patient) Published: June 07

I am 36, diagnosed with fibromyalgia in 2012. I started in 2014, with a passing out episode, and was diagnosed with bradycardia in the summer of 2015, and diagnosed with hypoglycemia in August of 2015. I woke up with extreme muscle weakness and haven't been able to walk without a cane or walker. I have seen many doctors since with still no diagnosis, every blood test you can imagine, including ANA for lupus and a biopsy for amyloidosis. Everything is negative! I have severe aches and pains, my legs are blotchy looking all the time and worse with sun exposure, I have awful headaches and pain often in my left kidney. Yet, still no diagnosis.

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Comment from: wendy#hill, 25-34 Female (Patient) Published: September 08

I have seen a doctor 2 months ago when I saw a bump on my ankle and it got swollen and red and itchy, then my left ankle was the same. Then I got these lumps all over my legs and arms, they itch and are sore. I got some blood work done and was positive ANA but no rheumatoid arthritis (RA). Now I have pain in my shoulder. I wonder what is wrong with me; I am a healthy person.

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Comment from: Mo5599, 19-24 Female (Patient) Published: April 11

I just recently got diagnosed with lupus. At first my joints would only hurt every once in a while, but now every day, it seems I have debilitating pain in almost every joint, especially when I wake up. The swelling and pain in my hands and feet make it hard to get a full night of sleep. I just started taking hydroxychloroquine which makes me extremely dizzy. I"m definitely having a hard time adjusting to lupus.

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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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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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