Patient Comments: Lupus - Experience


Please describe your experience with lupus. Submit Your Comment

Comment from: Tiffany, 65-74 Female (Patient) Published: June 04

I knew something was wrong for years but never tested for lupus until 2012. I also have fibromyalgia, Raynaud's phenomenon, and Sjogren's syndrome. I am now 69. My lower limbs are swollen, and I have terrible pain and extreme fatigue. I have not worked for 9 years.

Comment from: Abigail, 55-64 Female (Patient) Published: April 09

The doctor diagnosed me with costochondritis 9 years ago. The pain in my rib and sternum have been constant every day, and even after carrying heavy shopping bags. And today when the pain came I had a sudden sharp pain in my left nipple area. I wonder if anyone else goes through the same thing when you are walking.

Comment from: Jillbeck, 45-54 Female (Patient) Published: May 21

It began with swelling and pain in my hands. I was treated for fluid retention for 3 years. I initially asked to be tested for rheumatoid arthritis, which is how she found all the positive lab tests indicating systemic lupus erythematosus (SLE). After seeing a rheumatologist, it took her a year and a half and hundreds of tests. I am now diagnosed with SLE, Sjogren's syndrome, Raynaud's phenomenon, and Churg Strauss disease (a rare form of vasculitis). I take Plaquenil 200 twice a day, azathioprine twice a day and do 4 infusions a year of Rituxan. Rituxan is my dream drug! Huge differences.

Comment from: LT, 45-54 Female (Patient) Published: April 20

I had dry skin for years; the only lotion that helps it completely go away is Amlactin lotion. In my late thirties I would miss work because I felt ill, which was probably a flare, but I did not know what the cause was. I am now in my mid-fifties. Last October I was referred to my dermatologist because my entire back looks like I have a sunburn and had for several months. When I saw the doctor, I told her that I felt lousy, so when she biopsied a small sample of tissue from my back, she had it tested for lupus and found out that I have lupus erythematosus tumidus. I cross-checked the NIH (National Institute of Health) for articles on Prevacid (which is used for an acidic stomach). I had been taking Prevacid since age 33, and yes, that drug can trigger lupus. I discontinued the Prevacid by changing to Tagamet for the stomach acid. I am planning to have a skin biopsy every 9 months to see if the lupus goes into remission, which is possible because I stopped the Prevacid. I am ANA-negative. Twice, however, I have had periods of very sore muscles in my back, arms, neck and shoulders, once for 2 days and recently for 5 days. I am glad to see everyone's comments and wish everyone the best health! I don't remember where I saw this, but amlodipine bisulfate (brand name Norvasc) can also cause lupus (according to the NIH).

Comment from: Zita NZ, 45-54 Female (Patient) Published: July 29

Nearly 30 years ago, during labor, the doctor made the decision to break my tailbone as my baby was stuck. I remember hearing a crack and said I think my pelvis just broke, he said he just shifted my tailbone. Well, the next 6 months were spent either sitting on one leg or on a ring cushion. Ever since I struggle sitting on hard chairs. I had a lot of pain flying from New Zealand to London in May. It is nearly 30 years and it still hurts. My specialist said it can be removed for NZD 13000. I think I may end up with more problems as I hear of the high chance of infection which can be ongoing. I believe once a tailbone is broken it is always going to be a pain in the butt. I wonder if anyone else suffers from severe back pain. Oh well, life goes on.

Comment from: Steph, 35-44 Female (Patient) Published: January 08

I have not yet been diagnosed with lupus. However I have my first rheumatoid arthritis (RA) appointment Monday Jan 7, 2019. My symptoms began as a disc in my back went out, followed by extreme pain and sciatica. Fast forward 3 years the pain in my back is so severe with tender spots it radiates all over and every night I have excruciating pain. When I wake up in the morning I am completely stiff and my body feels bruised. My last doctor's appointment revealed a positive ANA after which I was referred to an RA doctor.

Comment from: Timt3200, 35-44 Female (Patient) Published: July 26

I feel like I'm in a black room full of full black balloons that keep getting fuller. I'm scared of what might happen when my room is so full of black balloons I can't breathe anymore. I fight the depression every day, all I do every day is hide in my house and when I hear a car hope that they are not coming to my house. Then my dog continues to bark, I tell her to hush, as if then the people on the porch will go away, but of course they don't go away; they knock till I have to answer the door. Most of the time I'm so hateful they feel uneasy, and finally they leave and I can go back to bed.

Comment from: Tumid Lupus, 25-34 Female (Patient) Published: July 09

I was just diagnosed with tumid Lupus and I'm trying to learn all I can. My doctor wants me to start Plaquenil, which makes me nervous. I also just learned that I have Hashimoto's. I also read many articles from healthcare websites, and all are good but any input would be greatly appreciated.


Lupus (Systemic Lupus Erythematosus or SLE) See a pictures of systemic lupus erythematosus and vascular, lymphatic and systemic conditions See Images
Comment from: scared68, 65-74 Female (Patient) Published: May 24

My mom is 68, vibrant, energetic, full of life, and a busy bee. Three months ago she got sick which led almost to her demise and the abdominal aortic aneurysm was discovered. Four weeks ago, she had the surgery to repair, and she came out of recovery nauseated and stomach feeling as if she was going to have a severe bowel movement. She has had another stay in the hospital for 4 days, seen a gastroenterologist, her family doctor and it's been discovered she has an ulcer at the point where the esophagus meets the stomach and among this there were 9 places biopsied in areas in her stomach and throat. She is at the emergency room again with vomiting and abdominal pain. Seems all her symptoms are on the wrong side of the discovery. It's really odd that none of these were bothering her before the surgery.

Comment from: marlyn, 75 or over Female (Patient) Published: March 23

My son received plasma exchange for his encephalopathy and it worked well. But that was 16 months ago and he is still left with some brain damage.

Comment from: sherry, 25-34 Female (Patient) Published: November 13

I have just been diagnosed with PBC (primary biliary cirrhosis). My problems started with an initial diagnosis of diverticulitis. I had extreme pain in the right side, but also pain in my back on both sides. The first round of antibiotics didn't work so I got a second round, then a third. Then they did a colonoscopy which confirmed the diverticulitis. I still had pain and diarrhea that went on for 3 months and they finally did a stool sample which showed that I had Clostridium difficile. After 14 days of Flagyl, I finally started feeling better. I lost 20 lb. rapidly during this time and am still losing. Blood tests showed abnormal liver enzymes and kidney levels. I had bloodwork every month with the last time being extensive and showed the PBC. I'm taking ursodiol 500 mg twice a day. Most recently I had a bladder infection 2 weeks ago and just called the doctor because I have another one. I only have one kidney so I am very concerned that the treatment of the PBC may cause damage to my kidney.

Comment from: joy, 75 or over Female (Patient) Published: June 30

I was diagnosed at 80 years of age with fluid in lungs. I was put in hospital and found to have 2 liters of fluid in lungs. Doctors did not know I had lupus at that time. Blood test tested positive for lupus. I have been on low dose of prednisone for 6 years, right now 5 milligrams every other day. I have a very mild case of lupus. Prednisone has controlled my lupus. I sometimes have a flare, but not very often. I understand what lupus can do to me. I live with it.

Comment from: 55-64 Female (Patient) Published: June 15

I was first diagnosed with discoid lupus at the age of 34. I had skin rashes that got worse when in the sun, but that's all. Ten years later I was diagnosed with SLE (systemic lupus erythematosus). I suffer from RA (rheumatoid arthritis) in both hands, my knees are very painful as I also have degenerative arthritis as well as lupus. I am always tired and in pain. I go to pain management and am taking Plaquenil twice a day, meloxicam, and assorted pain medications. Most days I can barely walk.

Comment from: Laura, 55-64 Female (Patient) Published: September 23

I was first diagnosed with Lupus at age 16, I am now 63. My first symptoms occurred after a bout with the flu. I had extreme fatigue and weakness that wouldn't go away. Prior to the flu I had hand and knee pain and swelling that wouldn't go away. My parents thought it was growing pains. Within a week of having the extreme fatigue I developed the butterfly rash on my face. It was then that I was diagnosed with lupus. Further testing proved it. I was started on prednisone and Imuran which was experimental at that time. I was on medication for three years including the weaning off of the prednisone. I still have lupus but was symptom free all these years until last week, when I began to have a flare up. I woke up one morning with extreme pain and weakness in my arms. I had been struggling with fatigue but contributed that to working 12 hour shifts in a busy urgent care clinic as a nurse. The ANA I had done shows that I am having a flare up. I have been very fortunate to have had a normal life for so many years. I have learned to take one day at a time. And will continue to do so.

Comment from: Mommarobey, 55-64 Female (Patient) Published: August 26

I was diagnosed with systemic lupus erythematosus (SLE) 20 years ago. Only in the last year do I have severe skin rash on chest, shoulders and back. Ten days ago I thought I had a sciatic episode which only lasted 12 hours. Now my feet are somewhat numb and tingling. I haven't been on any medications for several years and due to loss of insurance didn't even have medical care, now I must find a doctor. When first diagnosed with lupus I was on prednisone 5 mg daily and 250 mg of hydroxychloroquine 2 times daily. I am waiting for my doctor's appointment. Wondering what's ahead. Feeling fearful.

Comment from: Patient from Kosovo, 25-34 Female (Patient) Published: May 09

I would like to share my experience as a lupus patient. I was diagnosed on December 2012, they told me this came during my pregnancy. After 1 year, I decided to go through a very strong diet, which contains everything natural (vegetables and fruits) with the exception of meat and milk products such as cheese, yogurt, etc. At the same time I replaced all these foods with the vitamins. Now, ANA is decreasing and Anti DNA is better than the past. Also C3 is perfect. The doctor told me "you stopped the process" and I will happily say this diet was a success, I have no lupus anymore.


Lupus Symptoms, Rash, and Treatment See Slideshow
Comment from: kidsr1, 45-54 Female (Patient) Published: March 17

I have had lupus for 13 years. It took 4 years to diagnose it. My blood tests did not show the normal results for a positive lupus test but the doctor said let's try you on Plaquenil. I responded to the Plaquenil so we decided I have lupus. I was doing fine with no flare ups until last March when I was hospitalized for pain management. I now have a positive ANA and low C3 as well as a low Vitamin D. I have recently been struggling with severe hip muscle and knee pain. I am on steroids and I can"t seem to get an answer from any doctor to explain my severe pain in the knees and hips. My CRP does not indicate inflammation. I am looking to see if anybody has been able to receive a diagnosis for severe muscle pain without inflammation factors in the blood.

Comment from: [email protected], 55-64 Female (Patient) Published: January 13

I think I have lupus for 15 years or more, but not diagnosed till 2012. I always got sick in the fall, a long episode of colds that took forever to get over (immune deficient). I am a registered nurse and had to leave 3 different great jobs due to relentless fatigue. I am 59 now and feel like I lost 15 years of my life, but now I have a diagnosis. I finally ended up with confusion, muscle weakness, pain all over, mouth lesions, and a huge abscess on my arm. I had lupus lesions in my brain and on my skin. I ended up in the burn unit for months, on steroids and chemotherapy, 4 months in the hospital, 1 month at a physiotherapy rehab hospital. I have been home almost 2 years, on CellCept and Plaquenil. Still have fatigue, joint and muscle pain. I want to get back to my former pace and endurance, but I remind myself I am alive. I have a great rheumatologist, my doctors saved my life. I was perfectly functional in December 2011, then by January, a walking zombie, incoherent and in pain and not able to eat or drink. Every lupus patient needs people around them who know who they really are, to pick up on the physical and mental changes that show up. It took 2 weeks before the lupus diagnosis, and I kept deteriorating. Finally once we had the diagnosis, I had to have platelet apheresis before being sent to the burn unit, to care for the skin lesions. This is a tough disease to recognize and diagnose. I had been told I had fibromyalgia, chronic pain, restless leg syndrome, depression and anxiety. IF you have these symptoms, try rheumatology and test for lupus. Don't be put off if you think something more is wrong. I am finally on a treatment plan. I still have days of fatigue, and it takes longer to get over colds etc., but so much better than before. I am not crazy or lazy, just a little pooped now and then.

Comment from: Precious stone, 25-34 Female (Patient) Published: December 20

For over eight months I suffered severe pains, stiffness and swelling of my joints. I started with Voltaren but it wasn't any good, until I saw a consultant who said it was arthritis. I was given methotrexate and there was much relief until I noticed my hair falling off. I went back to the doctor and he asked me to discontinue and the pains came back but this time much more than before. Each night I was injected with Voltaren and pentazocine so I can sleep, until two weeks ago I travelled to India and there I was told I have lupus. Presently am on CellCept and some other drugs I just hope for them to work.

Comment from: juliem, 35-44 Female (Patient) Published: October 28

My diagnosis happened just after my fifth miscarriage (at the age of 30). It was only at that stage that the doctors thought that the miscarriages were down to more than just "bad luck". Symptoms which existed before that time included bouts of severe tiredness and various digestive disorders. Since my diagnosis I have been taking 75mg Aspirin every day, however that is no longer effective at stopping muscular pain, particularly in my arms with painful tingling sensations in my fingers. The rosacea has progressed over time, so it is difficult finding make-up which can give normal skin tone. I tend to be prone to chest infections due to predisposition to lung disorders.

Comment from: Carol, 55-64 Female (Patient) Published: August 09

I was diagnosed with Lupus in 1999. I have taken Hydroxychloriquine since then. I have had no symptoms in 11 years. I recently moved to Florida and have a new Doctor, well after Blood Tests, they tell me I am in Remission and have no signs of Lupus, that it is gone and I should stop taking the meds. For right now I am still taking the meds, scared to stop. Me first Doctor said no cure for Lupus that I will always have it, but it was low key, but new doctor says it is gone! Happy Days I hope, but I am scared!

Comment from: Tracy Anne Cawley , 55-64 Female (Patient) Published: April 23

I was diagnosed with immune thrombocytopenic purpura (ITP) when I was 19 in 1981, then I was diagnosed with systemic lupus erythematosus (SLE) in 1994. I am in constant tears every day, I can't sleep and now both my hands feel like I've got pins and needles in them.

Comment from: lucy kiogora, 35-44 Female (Patient) Published: April 23

I was diagnosed with lupus last year, 2013. I had trickling while walking, butterfly rashes on my face, palms of my hands were dark with sores, ulcers in my nose, painful muscles, fatigue and joint pains. I am on prednisolone drugs. This condition rely destabilized my life but now I am more informed on the same.


Lupus is an infection. See Answer
Comment from: maano, 19-24 Female (Patient) Published: April 14

I am 21 years old and a medical student suffering from SLE (systemic lupus erythematosus). Two years back in December 2012 I was attacked by Stevens-Johnson syndrome. After recovering from this, SLE assaulted me, and since then am suffering from it. At this time half of my kidney is damaged. Doctor has prescribed me Cellcept for kidney in addition to my other dose for SLE.

Comment from: sfruth, 65-74 Female (Patient) Published: February 28

I am a registered nurse who contracted norovirus on a cruise. I quickly developed sleeping in my hands and fingers, and joint overgrowth and stiffness. A year went by, and a reduction in force at my job resulted in an assignment to a different position which involved a change in work hours and a much higher level of stress. Symptoms exacerbated until my doctor ordered some tests, and I had an extremely elevated ANA. Referral to a rheumatologist led to diagnosis of lupus 1 1/2 years after my initial symptoms.

Comment from: mytiger, 55-64 Female (Patient) Published: October 08

I have just been diagnosed with lupus. I have had fibromyalgia for 15-20 years diagnosed by my rheumatologist with chronic fatigue and all over painful joints and muscles. I also was diagnosed with neuropathy of the feet and degenerative disc and joint disease. Now my hands and fingers hurt as well as back and hips and my eyesight is getting bad. My skin started looking bad with bruising and spots and rash so my doctor tested me for lupus.

Comment from: Sherry, 45-54 Female (Patient) Published: November 16

I was diagnosed on September 6, 2007 at the age of 43 by an internist. I started getting sick feeling on July 1, 2007 after moving. My joints swelled up and I was in extreme pain. At first I put it to moving too much too fast but as time progressed, my symptoms got much worse including sores in my hair and mouth and nose. I was not able to get out of bed because of pain and fatigue. I finally went to the family doctor and said "You better help me because I'm dying!!" I was in the internist's office for 10 minutes and he said I had lupus. He sent me across the street to the hospital for iv prednisone. Within the first five minutes of receiving that, I started to feel better. Four years later, the azathioprine slowly stopped working; I have had a constant flare for four months. I have now been put on cellcept (which is very expensive but I have group coverage of 80%) and four days later, I am almost pain free and I have energy. On the third day I had energy for the first time in what seemed like forever. I was able to make dinner, unload the countertop dishwasher and reload it, hand wash dishes that I hadn't had energy to do for a week, sorted and did laundry and cleaned my kitchen. I don't feel like a lazy person anymore and I can move relatively pain free. Today was my first day at work since starting these meds and I got home and don't feel so exhausted that I can't do anything. I love it!!

Comment from: Cheyluv, 19-24 Female (Patient) Published: February 07

I am a 23-year-old woman. I was 16 years old when, out of nowhere, I had all the symptoms at once. I was stuck in my bed, couldn't move because of the joint pain, swelling, and unbelievable fatigue. I also had a small rash. The next year, I was diagnosed and began taking hydroxychloroquine, which I am still taking now. I have not had a "flare" since four years ago before my first son. I was blessed with two boys. The fatigue is still enormous. I know it's not just because I have two kids. The only concern is a recent check of my platelet count that shows it is decreasing every time. The doctor says it's not too low, but he will keep an eye on it. I just try to take care of myself and hope things don't get worse. Most days I wish I could have more energy, but I guess in some ways I'm lucky.

Comment from: cgig, 35-44 Female (Patient) Published: February 02

My symptoms started very abruptly at the age of 29. I actually had a very high fever with ankle and knee joints swollen so bad that I could not walk, and I had the rash on my face. I was very lucky in that my primary doctor diagnosed me on the spot and sent me to a specialist right away. I have had ups and downs with lupus over the years, but I have managed to balance it with Plaquenil, exercise and diet controls. The biggest thing to remember is not to let lupus live your life -- you have to learn how to live with lupus.

Comment from: sugarboo103, 35-44 Female (Patient) Published: January 28

My symptoms started at about the age of 13, I started having protein in my urine, aches, pain, swelling in my joints and then the rash around my eyes and cheeks. It took countless doctors before I was finally diagnosed at the age of 21. Since then the symptoms have gotten progressively worse. Mostly fatigue, swelling in the joints mostly my feet, headaches and I've also had lupus related hepatitis. Actually the only time I feel better is when I'm pregnant, which most doctors say you shouldn't have children. I've been blessed with 4. I don't get a lot of support from my family because there are no outward signs of the illness. Most doctors are the same too. Luckily I have found a good doctor that listens and has prescribed me a new medicine. Hopefully it works.

Comment from: Shabnam, 19-24 Female (Patient) Published: March 08

It is very difficult to live with lupus.

Comment from: Spotohunny, 45-54 Female (Patient) Published: May 02

I have what doctors call lupus. The pain is always worse with medication. My arrogant young doctor claims he never heard of such a thing. Why would medication cause me more pain than the disease!

Comment from: glianneeunice, 25-34 Female (Patient) Published: May 20

I am a 30-year-old woman. I was 10 years old when am diagnose with SLE Nephritis with edema. I was stuck in my bed, couldn't move because of the joint pain, had swelling, fatigue, rashes, and the trademark butterfly sign on my face. I've had lupus for 20 years. Since being diagnosed, I've been in and out of the hospital. I also undergo chemotherapy. I have two children, ages 11 and 6. I'm currently taking several medications but am still not feeling work. My doctor told me that my lupus must be flaring.

Comment from: Joann, 55-64 Female (Patient) Published: April 26

I'm 60 years old and I was diagnosed with lupus 31 years ago. It all started one morning when I was on my way to work. I developed a skin rash on my face, ears and arms. It itched like crazy. Afterward, I contacted my physician and I was referred to a dermatologist. A biopsy was done and it was clear that I had lupus. I was treated with many types to medication, including prednisone. I was very ill for years, and in and out of the hospital. It is in both of my kidneys, now I'm being treated with CellCept and prednisone. Otherwise, I feel great I'm a little slower now but my body doesn't ache much anymore. I'm still enjoying life and having a great time traveling.

Comment from: Lisa74, 35-44 Female (Patient) Published: July 24

I am 43 years old and was first diagnosed with lupus when I was 19. I was lucky my doctor picked it up straight away and sent me to a specialist. Since the beginning the lupus has always manifested itself by reducing my kidney function. At 31 I needed a kidney transplant and so far everything is going well. The drugs to manage anti-rejection of the kidney have also reduced my lupus symptoms to nil. I live a wonderful life being able to work full time and spend time with my husband, family and friends. They have been there with me all the way. I hope that other sufferers look at my story and I wish them all the best in their fight. Keeping a positive attitude and being emotionally strong has been the best way to cope that I have found.

Comment from: Do I have Lupus, 45-54 Female (Patient) Published: April 05

I was sent to a rheumatologist from my family doctor after several blood tests. Family doctor thought my numbers revealed Lupus. I was diagnosed from the rheumatologist with fibromyalgia several years ago. With many, many ups and downs in my health, I feel sick everyday and have been to my family doctor so many times. Nothing is helping.

Comment from: Kete, 25-34 Female (Patient) Published: May 02

I am 29 years old and was diagnosed with lupus 10 months ago after a series of lab tests. It started with just a simple fatigue, fever, joint pains, mouth sores, lesions, and redness on my cheeks when exposed under the sun. I thought it was just an ordinary flu but it get worst. I was prescribed to take hydroxychloroquine and prednisone. Since then the symptoms lessen but sometimes it persists when I can't avoid sun exposure. Now, I use sunblock with high SPF to protect my skin.

Comment from: natalie, 35-44 Female (Patient) Published: October 11

I've been sick for a year now. Joint pain and swelling. Continuous hair loss. Terrible fatigue. Low grade fever for weeks at a time, nausea. Started having chest pains, feet and ankle swelling had to go on Lasix and potassium. Gained 40lbs. I think that was because I was getting depressed because I have not yet been diagnosed with anything. Dry eyes, had to put drops in them all the time. Purple/bluish toes they are always cold. Then i had tachycardia and abnormal heartbeat. Then got Raynaud's disease on my hand. My pcp said to call my rheumatologists and I am going on Monday. It takes me 2hrs just to get up and be out of pain enough to go anywhere, so I will be getting up at 6am for an 8:30am appt. I try to make appt. late in afternoon but that's all they had.

Comment from: shripad, 25-34 Male (Patient) Published: August 02

I am suffering from lupus from last 2 years. I had been through a high intensity of pain and had gone through 100 days in hospital. I have been taking steroids for a year and so, which has resulted in my weight gain (14kg) and a bulky round face. My doses are lowered down now and I am taking anti inflammatory, hydrochloroquin, calcium supplements and some NSAIDS, but I am not happy with the physical state I am going through. I am not happy with life.

Comment from: rjv1967, 35-44 Female (Patient) Published: June 02

I am a 43 year old woman and Lupus and RA run in my family I have been bounced from specialist to specialist since 2000. They even disagree with each other first saying it was RA then Fibro now with a positive ANA and elevated sed rate they are treating me for Lupus. I feel like my story is so much like everyone else's on the forum. It is so frustrating and so depressing. At least now I know I'm not alone.

Comment from: lonely and afraid, 55-64 Female (Patient) Published: May 03

I just got diagnosed 2 days ago. For so long, I have felt not right, tired, and just not well. Everyone thought I was crazy. Doctors just kept ordering up pills with no real answers. I am scared, unknowledgeable, looking everywhere for answers, wondering what will happen. My mind is on a continuous merry go round.

Comment from: Boipelo, 35-44 Female (Caregiver) Published: April 28

I am a 25 years old lady who recently just lost her mother due to lupus, she started having all the symptoms in 2009, she had swollen feet and face, pain joints, fatigue, pimples all over her body, skin problem, nails cracking and changing to be black, and the doctor couldn't diagnose her by then until the last week she was passed on this year Feb. I feel like if the doctors would have acted quickly she would still be alive.

Comment from: Ladyj091569, 35-44 Female (Patient) Published: April 13

I am a 41 year old woman that has been suffering with lupus for about 13 years now and now I am finding it so hard to even get out of bed in the mornings because of all the pain that I feel in my body. I do also suffer with depression, nocturnal grand mall seizures, rash, ulcerations, and now possibly crohn's along with a lot of other conditions that this has done to me. I feel like I'm in this battle all by myself and I really don't know what to do about all of this. This winter has been the worse for me physically and mentally and I am looking for some kind of support from other lupus patient's because, I can't battle this disease by myself anymore. Please help! Thank You!

Comment from: janet, 45-54 Female (Patient) Published: April 12

Initially,I was diagnosed with chrohns disease and then was put on prednisone and a year later seemed to be in a remission of sorts. I noticed that the joints of my thumbs and hips hurt alot and that I had these raised itchy patches on my lower arm. I had them tested and was told I also had Skin Lupus. Over the years I have noticed that when I have a flare up that More joints are affected and I have pain in my chest and am generally tired all the time. Now I have signifigant hearing loss and eyesight loss within the last 11 months and I believe that the onset of this last bout has damaged some nerves as I do not think clearly, have a steady white noise in my head and both eyes and eyes have significant change within 4 months. I now have bifocals and have to get hearing aids. from having simple reading glassed and great hearing I can tell you I feel like I am losing myself bit by bit. The light semsitivity is awful right now as is the concentration level. BTW, I am 49 and lead an active normal life but this has really knocked me down. I am using azothioprine but cannot use NSAIDS because of the crohn's.

Comment from: tearose, 45-54 Female (Patient) Published: March 07

I have constant pain all over and in the chest, extreme fatigue, night sweats, memory loss, rashes, recurring bladder infections, sores around mouth and nose and tendonitis in both wrists and shoulder requiring operations. Diagnosed with lupus almost 7 years now.

Comment from: melissa, Female (Patient) Published: February 04

I started having a lot of problems in my joints and muscles. After cleaning a room in my house I would not be able to walk good for about 3 or 4 days. Even now I am unable to do normal house hold chores without hurting. It has also really messed with my breathing over the past few months it is really hard to breath at times for very long period of times I must sleep sitting up to. I can't catch my breath I use a nebulizer at night and during the day I must use inhaler 2 to 3 times daily I also have used Pred. at night to help my breathing and I am 37 years old.

Comment from: lupus40miami, 35-44 Female (Patient) Published: February 02

I was first diagnosed with Lupus by an allergist. I had a rash all over my body especially my face that would not go away, joint pain and swelling, exhaustion and overall malaise. I have been on Plaquenil for 5 months now and it has helped but I continue to have exhaustion, muscular aches and pains and now I've developed tachycardia needing a cardiologist evaluation. I've been diagnosed with fibromyalgia as well. There are days that I wish I could just stay in bed. I lost my job over Lupus.

Comment from: CaptainG, 55-64 Male (Patient) Published: January 24

First thing, I am a male and like most people who thought Lupus was a chic affliction I never thought of it as something I would have. It started at about 8 or 9 years old, swollen glands, unexplained fevers and night sweats, feeling drained and mentally foggy. By the time I was 13 full symptoms appeared: chest pains, joint pains, fatigue, and mental confusion, flu like bouts that lasted a month or more. These symptoms have stayed a part of my life up till now at 57.

Comment from: zoe, 25-34 (Patient) Published: February 16

I was 23 when I found out I had SLE and I couldn't understand what it was but all I knew my joints were painful and my whole body was in pain. Then I was swelling up my hands I couldn't move from the bed and I was so helpless and I thought I was going to die. I lost so much of weight because I couldn't eat and now I'm still battling with breathing problem and sleeping because I can't sleep flat on the bed, I need a big pillow to be able to sleep.

Comment from: julia, 65-74 Female (Patient) Published: January 24

When my hands are cold. My finger nails turn black.

Subscribe to MedicineNet's General Health Newsletter

By clicking Submit, I agree to the MedicineNet's Terms & Conditions & Privacy Policy and understand that I may opt out of MedicineNet's subscriptions at any time.