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: 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: 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: 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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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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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?
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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