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?

Published: June 16

Mostly joint pain that sometime prevent me from getting in and out of bed.

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Published: June 16

My Lupus...step by step. The very first symptom I had was tender spots all over my body, aching pain, fatigue, and frequent migraines. Confusion and memory loss going beyond simply misplacing my keys. Now, I don't drive very far from home. 2 nd stage was increase pain throughout my body, constant twitching of my muscles and tightening of the right side of my face. 3 rd. The pain in my extremitas increased, then I became so clumsy that I began falling down. 4th diagnosed with polyneuropathy. 5th I've become very clumsy, not having 100% control of my walk or fine motor skills, I have thrown away my high heels and now wear only the wide cross trainer tennis shoes to improve my balance. 6th I now have a weakened immune system. It is common place for me to have at least one infection or two at all times. These infections hang on and on.

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Published: June 16

I had severe weakness and arthritis in my hands. It starts with my thumbs, then fingers, then palm this was then followed by fatigue and photosensitivity.

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Published: June 10

Frequent sore throat, fatigue, joint pain and aches, butterfly rash, general feeling of malaise.

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Published: June 09

Several years ago I started having right knee pain. I ignored it, just blamed it on getting older, probably a touch of arthritis. I was only diagnosed a few months ago as having Lupus. I've gone from just one knee hurting to angles, knees, hands, elbows & shoulders. I almost always have pain in one spot in my upper left chest, & below my right scapula. I'm always exhausted, no matter how much sleep I get, but at the same time, I don't sleep well, toss & turn a lot. At times my face is so red I look like it has been painted on. It is difficult for me to complete tasks. I'm hoping medication will help soon.

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Published: June 05

When I first began having symptoms of lupus I had a rash on my nose, my joints were always painful and swollen (no matter what I took for it), and I was EXTREMELY sensitive to sunlight. I was ALWAYS tired, and I was VERY confused....my thought process during a flare is totally different than how I am every other day. I am on my second medicine trial....so far so good.

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Published: June 05

For about 12 months I was feeling extremely tired, putting it down to working as an RN in a busy neurosurgical unit. This fatigue would not leave me even after lengthy rest periods. Next I noticed rather large lumps of hair on my pillow and just falling out generally. I then woke one morning with a red rash across my cheeks and nose. One look at this by a dermatologist and Lupus was then mentioned. This was 1981. Next came proteinuria, off to hospital and that was the beginning. In many ways I was a lucky person being in the right place at the right time with people who recognized the problem early

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Published: May 28

I was having trouble lifting my arms to dress myself, and I could hardly walk or get around. At this time, my hands, arms, knees, and ankles hurt all the time. I take medication every day to help.

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Published: May 28

The symptoms of SLE (which I suffer from) are joints paints, migraine, feeling hot at joints, skin rash, and hair falling out. These symptoms appear 10 days prior to my menstrual periods.

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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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