Lupus (Systemic Lupus Erythematosus)

Question:

The signs and symptoms of lupus can vary greatly from patient to patient. What were your symptoms and signs at the onset of your disease? Submit Your Comment

Comment from: Ludwe M, 0-2 Male (Caregiver) Published: July 08

I was diagnosed with lupus about 10 years ago. I occasionally have what my doctor calls a 'flare' and I get joint pain, mostly in my hands and knees, and chest pain, which is from pleuritis.

Comment from: Cre, 45-54 Female (Patient) Published: December 31

I was recently diagnosed with borderline lupus. Now looking back over the years, it explains many illnesses that I have experienced. Since being diagnosed, I am experiencing flares big time. Stiff aching joints, especially at night (hips, hands, elbow, shoulder, arm, especially right side, and knees), sores in my nose and recently thrush and sores on the back of my tongue and throat. If it's borderline, why am I going through this agony!

Comment from: Olga, 45-54 Female (Patient) Published: December 26

I have had lupus since 2004 but now I feel like burning when somebody touches, and pain in my elbows, back, and knee at nights.

Comment from: Sore Sandy, 45-54 Female (Patient) Published: December 11

I was diagnosed last month with lupus after years of thinking I was crazy. I have degenerative disc disease and thought all my aches and pains were stemming from that. But as I became stiffer and sorer, with a red scaly rash on my hands, face, and head, I knew something was seriously wrong with my body. My sister has multiple sclerosis, so I was tested for that and then lupus. Scared of what awaits me! The pain is ridiculous already. I’m 51 and female.

Comment from: Nyna123, 45-54 Female (Patient) Published: October 08

My lupus symptoms started 3 years ago with leg and foot swelling and fingers, and moved to hand pain that has been consistent for the last 2 1/2 years. A year and a half ago joint pain moved to feet, now shoulders are extremely painful, and the knees alternate occasionally. I have skin rashes, hair loss (alopecia), redness across the cheeks and nose previously diagnosed as rosacea, Hashimoto’s thyroiditis, Raynaud's disease, muscles that feel bruised all the time, fatigue, and muscle weakness. I am being treated for lupus now.

Comment from: Wanting to know, 35-44 Female (Patient) Published: June 09

I haven't been diagnosed with lupus, but wondering what others who have been, think. My symptoms have ranged from numerous things: swelling in hands, then feet, night sweats, stomach issues, feeling unwell majority of the time, forgetful, hair falling out, weight fluctuating, migraines, sensitivity to sun/bright lights, joint pain all over, bruise easily, WBC fluctuating, one minute I'm anemic next I'm not, etc. I was once told my body is attacking itself, to now I'm normal.

Comment from: Marietta, 45-54 Female (Patient) Published: September 17

I was diagnosed with lupus at 39 after having problems for a long time. I had creaky joints, memory problems, fatigue, terrible thirst, and painfully dry eyes. My eyes were so painful for so long that I actually thought, if my eyes were removed, the pain would stop. For many years I bruised so easily that it was assumed I was being beaten by my boyfriend. It wasn't true.

Comment from: DaNi, 35-44 Female (Patient) Published: September 03

Lupus has showed its ugly face in my life in 2017, after various tests, biopsies, treatments, etc. My symptoms during a flare can bring me to complete humility very quickly. I cannot get up, and I can’t move my arms. I’m crying for help because I cannot help myself. It’s absolutely terrifying and to be honest, embarrassing. I’ve had to have my teenage daughter help me get dressed and brush my hair. I am only 38 years old by the way.

Comment from: Nurlinda, 55-64 Female (Patient) Published: July 09

I was first diagnosed with lupus in my 20s, then I thought it went away. At 59 I went deaf and had a cochlear implant placed. Six months later I have been diagnosed with SLE (systemic lupus erythematosus). I have horrible fatigue and joint pain. My ankles are bad. I am currently on antimalarial medicines, but they don’t seem to help. My doctor says they take time. I am a nurse. I am trying to figure out if I should go on permanent disability. The combination of my lupus with being deaf can be terrifying at times.

Comment from: Woodalexise , 19-24 Female (Patient) Published: June 19

My first symptom of lupus was fatigue. I could sleep all day and still wake up feeling tired. Then the shoulder pain that we thought was my rotator cuff. I was in physical therapy for over a year trying to “fix” the problem of my shoulder. It wasn’t until I went for my yearly exam and blood work that they noticed something was off. I’ve gone through 3 oncologists and 1 hematologist until finally the last one sent me to a rheumatologist who did the appropriate test.

QUESTION

Lupus is an infection. See Answer
Comment from: KWright, 25-34 Female (Patient) Published: June 10

The lupus symptom that had me initially seen by the doctor were severe thunderclap headaches which would lead to a numbness around the back of my head. I had always had rashes, joint pain, chronic nosebleeds and was frequently ill growing up, but it always was attributed to allergies or being too rough (I was an outdoorsy type). It wasn't until after my diagnosis that all the pieces fit together. I now have a lot of neurological symptoms like insomnia, anxiety and seizures.

Comment from: greatwife, 35-44 Female (Patient) Published: October 22

My early symptom at the age of 16 was joint pain. It felt like I was sleeping under an air conditioner and was very stiff. My mother has lupus, which made it easier to diagnose. My biggest flare up now is skin rash from the sun. It was most prevalent during my pregnancies. I have a wonderful doctor who has kept me healthy with the right mixture of drugs. I am now 36 with two healthy children and a wonderful husband who supports me.

Published: September 11

At the onset of my lupus, the only symptom I had was joint pain. Each morning, I'd wake up with pain in a different joint. One day, my wrist, the next day my knee, then my fingers, my elbow, etc. The pain would last all day, and it didn't matter if I took Tylenol or Advil or anything. It was there until I woke up the next morning with a different sore joint.

Comment from: Jerry, 25-34 Female (Caregiver) Published: July 19

My daughter-in-law has been in intensive care for three weeks with lung issues, under sedation. She has stabilized but no clear end in sight. What an insidious disease lupus is! If it was caused by bad lifestyle choices and therefore much more common, I’m sure we’d see much more and better research on the specific cause and real treatments, rather than just supportive measures.

Comment from: Loulou, 55-64 Female (Patient) Published: June 10

Mostly I was always tired no matter how many hours I slept, and I had a slight fever most times. It was very depressing at the age of 30 (I am now 60) to be incapacitated this way. I knew though when I was going to have an episode because there would be a sharp burning sensation going up my spine (I found an old article about this a long time ago) but it is true for me. My condition has been in remission for about 15 years (no medication) - I continue to exercise and eat right and I feel great.

Comment from: Bubbles1968, 35-44 Female (Patient) Published: April 26

I was only diagnosed with lupus about four months ago. For three years, I have had various symptoms: rheumatoid arthritis, night sweats, insomnia, joint pains, swelling erratic periods, stomach pain, shortness of breath and hair loss. In December of 2009, I had a plaque-like rash. It started on my chest, but within hours, I had a butterfly rash across my entire face and then my whole body was covered with itchy, sore lesions. Eventually, I saw a dermatologist who did skin biopsies and blood tests. I live in England, and the doctors here don’t know anything about Lupus.

Comment from: jpuppychow, 35-44 Female (Patient) Published: April 16

When I first had problems with lupus, I would have continual problems sleeping through the night because the hip pain would keep me awake. I also started losing clumps of hair in the shower.

Comment from: teran, 35-44 Female (Patient) Published: April 09

Today my doctor ran some tests on me for lupus. I have had a rash across my nose and cheeks for a while. I get rashes all over for no reasons. The lymph nodes on the back of my neck stay swollen. I am tired all the time and my temperature stays at 99-101. Numbness and tingling in my feet are so annoying. To add to all of that, I have degenerative disc collapse, asthma, COPD, high blood pressure and stay sore all over. To top it all off, I am allergic to steroids, and most antibiotics and anti-inflammatory medications.

Comment from: Neeka, 45-54 Female (Patient) Published: March 01

When I first found out in 1995, 15 years ago, my symptoms were: Aching pain in all joints and swelling in my hands. It felt like something was eating away at the top of my finger tips. Also, I was feeling tired all the time, though I didn’t know what it was. I went to see a doctor and the Winston Salem School of Medicine, where I was told that I have lupus. They treated me with prednisone and other anti-inflammatory meds. Good luck to all of you.

Comment from: Karen, 45-54 Female (Patient) Published: January 15

I have looked at so many sites that are confusing. This is an excellent site.

SLIDESHOW

Lupus Symptoms, Rash, and Treatment See Slideshow
Comment from: angkaytab, 35-44 Female (Patient) Published: January 08

I was diagnosed about a year ago with Lupus. I have been suffering off and on for about 20 years with different symptoms. It started with extreme fatigue and a weird numbness on left side of body. Then came the panic attacks, chest pain, joint pain, severe rashes and swelling from the sun, strange rashes covering my back, but mostly FATIGUE. Over the years, I've been told I had Lyme disease, Crohn's disease, Epstein Barr, mono, hypothyroidism and hyperthyroidism. At one point I even went to a psychiatrist because doctors couldn't find what exactly was wrong and I thought I was crazy.

Comment from: Shegufta, 25-34 Female (Patient) Published: December 29

I used to suffer from fever and malaise and shivering whenever I had exams and I was treated with broad spectrum antibiotics because the cause was always undiagnosed. I used to suffer for at least a week. Occasionally, I had swollen eyelids. I sought help from nephrologists and they finally diagnosed lupus.

Comment from: GERI, 35-44 Female (Patient) Published: December 29

I was diagnosed five years ago after I went to a doctor with all sorts of ailments such as joint pain, fevers, skin rashes, heart palpitations. The doctors I was seeing at first made me feel like I was a hypochondriac. I finally found a doctor in Johannesburg who got me back to my old self in no time and now, I have not had a flare-up in about three years!

Comment from: bcortmann, 45-54 Female (Patient) Published: December 10

Before I was diagnosed with lupus, I had frequent viral or bacterial infections, followed by night sweats and fevers. Antibiotics didn’t seem to help. I also had joint pain and sever mouth ulcers. I also had dry eyes and a dry mouth as well as numbness and tingling in my hands. I had fatigue to sever that I just wanted to lie in bed. I started reacting to sun exposure, followed by a rash on my face, neck and chest. I even developed panic attacks and ringing in my ears. All in all, it took three years to diagnose lupus for me.

Comment from: andagz, 45-54 Female (Patient) Published: November 30

I first began having "odd" symptoms approximately 5 years ago. It first presented as flu-like; chills (no fever) achy joints and a strange redness on my chest. The red area was in a V pattern. The first flare was by far my worst. I have had these symptoms on and off all this time. I tested negative for lupus up until this year, and now my tests come back positive for lupus. My symptoms have also varied from rashes to muscle and joint pain, hair loss, fatigue, loss of libido, sun sensitivity and sleep disturbances. Don't stop looking for an answer! It's not "all in your head"!

Comment from: trishaun, 35-44 Female (Patient) Published: November 25

I was diagnosed with lupus about 2 years ago after about 2 years of all sort of testing. It is very difficult to diagnose. I have suffered from hair loss, joint pain and swelling, and skin rashes. This has caused me great depression although I have a wonderful husband who is extremely supportive. I often wonder if anyone else knows what I am going thru. I hate to see there are others who share in my suffering. God bless you all!

Comment from: 25-34 Female (Patient) Published: November 17

I was diagnosed with lupus at 30. I have joint pain at the knee and my right middle finger swelled up and would not straighten. Subsequently, all of my fingers swelled and were very painful. My eyes were bloodshot most of the time. I was diagnosed with arthritis initially. When it was full-blown, I had a fever every morning, and I also had rashes on my face. Now, I am suffering from hair loss and lethargy post-treatment, and I’m on immunosuppressants.

Comment from: 45-54 Female (Patient) Published: November 06

My symptoms of lupus were joint pain, severe headaches after sun exposure, nosebleeds and rashes.

Comment from: cornaig3, 75 or over Female (Patient) Published: October 23

The only symptoms I have are related to skin --- butterfly rash, swollen face and lips, open sores, skin sheeting off, bleeding arms etc. Sores were not itchy, but wounds on arms were very painful. Large amount of prednisone dramatically ended peeling and swelling.

Comment from: 35-44 Female (Patient) Published: October 09

My symptoms at onset were arthritis and a bad rash in the butterfly area. I also lost a lot of the hair on my head, and the remaining part of it became thin and weak. I live in Denmark and I am a teacher. I was diagnosed with SLE in 1993, at the age of 23.

Comment from: JH, 55-64 Female (Patient) Published: May 12

I am a 59 year old female and I was just diagnosed as having Systemic Lupus. I have had joint pain (hip and ankle), ringing in ears, numerous cold sores ,yeast infections, Shingles (twice) insomnia, butterfly rash, hair loss, panic attacks, anxiety, headaches, dry eyes, sores in mouth and colds that last for weeks. I spent the last year in the doctors’ offices and it wasn't until I went to the dermatologist with the hair loss that he ordered the proper blood tests to confirm my condition. I live in Deland, Florida and wish I could find a support group in my area.

Comment from: 4727, 45-54 Female (Patient) Published: February 19

Joint pain - ankle very bad (previously sprained) and had pain and difficulty walking; first diagnosed by orthopedic surgeon as plantar fasciitis. Then had extreme shoulder and back pain, and a swollen middle finger that persists. Finally, very sick with a cold and suffered extreme fatigue. Internist ordered ANA test and positive result. Many more tests to eliminate possibility of other problems (gout, diabetes, thyroid), but as symptoms persisted and worsened, lupus dx stuck and began medication, plaquenil after seeing rheumatologist for first time.

Comment from: cricket252, 65-74 Female (Patient) Published: January 15

I have sore and swollen hands, fingers and wrists, sore arm muscles, shoulders and elbows. I experience weakness in the upper body. I have a sore throat, ear ache, one side of neck and head sore and swollen in the back, fatigue and chills.

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