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: 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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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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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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