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: 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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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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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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