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: 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: chiquita, 45-54 Female (Patient) Published: March 27

I have lupus and fibromyalgia. My hands and feet are so dry, I tried so many creams nothing helps.

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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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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?

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