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: cupcake, 35-44 Female (Patient) Published: March 11

I was diagnosed with lupus in 2014. I woke up one morning with shortness of breath and my arms, hands, and legs were killing me, and I was beyond fatigued for 3 days and had fever. I take naproxen and prednisone.

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Comment from: Mary, 55-64 Female (Patient) Published: November 05

On vacation at about 12 years old I took a sulfa antibiotic for cold/flu. I developed ulcers in my mouth and then went on to have severe joint pain to the point that my mom and aunts had to carry me to the bathroom. I remained in bed and even unable to turn myself over or change positions without help and overwhelming joint pain. Years later I was diagnosed with SLE (systemic lupus erythematosus) and the episode with sulfa suggested as my first flare.

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Comment from: CoCoChanel, 25-34 Female (Patient) Published: July 30

I have not been diagnosed with lupus at this time. My ANA was negative but each time I have a sedimentation rate done, the number increases. Since January, I have been diagnosed with polyarthralgia (they say there is not enough inflammation for arthritis), fibromyalgia, seborrheic dermatitis, anemia, obstructive sleep apnea, tendonitis, fatigue, exhaustion, telogen effluvium and I strongly believe that I have costochondritis. My insomnia, depression and chronic fatigue are out of control right now. I am in pain all the time. After not being able to get out of bed for a few days, I finally went to the emergency room (ER). After talking to the doctor for 10 minutes, he told me that he thought I had lupus. I have seen 7 doctors since that ER visit and feel like no one is taking me seriously. At the onset, I thought that I had irritable bowel syndrome (IBS) or was (all of a sudden) lactose intolerant, then the aches and pains started. It has basically been a snowball since then. This started in January of 2013 and here I am, in July of 2014 with no real answers. Just an ever growing list of medications, doctor appointments and conditions. I am at my wits end!

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Comment from: rockygirl, 45-54 Female (Patient) Published: June 12

I had blood transfusion at birth in 1950s. I was sickly as a child/teen/adult. Doctors could never find anything wrong, lupus was never mentioned, and parents trusted doctors. At 46, I was very sick for months, doctors said nothing wrong. At 48 I developed joint and muscle pain that progressively worsened. With positive ANA test, I went to the rheumatologist, had mild medicines, and not much help. Pain increased, I changed rheumatologist, was diagnosed with lupus/fibromyalgia, and massive amounts of medicines were prescribed. Three years later, I have bad brain fog, can't work, and permanently disabled. Insist with your doctor to help you, and keep journal of symptoms; not all tests have to be positive.

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Comment from: Shauna, 45-54 Female (Patient) Published: May 01

I"ve had joint pain for years. After I had my second child, I had a miscarriage in between, anyway I went to the doctor. And my description to the doctor was, I felt like I was 90. My initial test came back positive for lupus. However I was told I needed further testing. I was poked, prodded, and tested for almost 4 years before I was told that I had systemic lupus erythematosus (SLE). I had restless leg syndrome (RLS) in my legs and arms. My husband almost moved to the couch because of my arms jerking uncontrollably and I would hit him. I would fall without any warning. Once I fell and my chin hit directly into the wall almost knocking me out and I thought for sure my jaw was broken. I had migraines so severe that I couldn"t even walk to the car to go to the doctor to get shots to ease the pain. I have pain in my arms at times that I can"t move them from the weakness. My toe joints hurt so bad at times it feels like I"m being stung by a bee over and over. I have no feeling in some areas of some of my toes except for the bee sting pain. I"ve had an ulcer from the medication I"ve had to take. I have insulin resistance syndrome (IRS). I have spondylosis in my neck and thoracic spine. My spine has an area that is numb to the touch. I have vasculitis and my legs look horrible from my veins. I"ve had tumors removed from my back close to my spine. I had a tumor removed from between my eyebrows, after surgery I had a reaction and developed rhabdomyolysis and couldn"t walk without the assistance of a walker for over 2 weeks. However I am thankful that my heart muscle was not damaged from that. I had to have my gallbladder removed and spent three days in the hospital because I had severe pancreatitis at the same time. While in recovery I was doing well and then I stopped breathing. I had to be bagged to help me start breathing again. At one time I was taking 17 pills a day. I now take Plaquenil, Celebrex, medication for RLS, medication for IRS, and pain medication. When I get a migraine, I take Benadryl, Promethazine, and a pain medication to relieve the migraine.

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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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