View Full Version : What is your Lupus story?

01-25-2010, 01:35 PM
I joined earlier last year, but realized I'm a bit curious as to how everyone got their diagnosis, at what age, etc. I am curious to learn about how everyone found out that they had Lupus. Of course, you don't have to respond, but maybe it will help everyone get to know each other a little better?

Here is my story.

My name is Nicole. I am 18 and enrolled in college. I was diagnosed at 3 years old, although I have had negative ANA testing. I went to All Children's hospital and was the youngest case seen at the hospital. I was in and out of the hospital for several years for testing, although I was pulled out of the testing system as they were trying different drugs, most of which just made me sick. I realized when I was 8 that I couldn't play with my friends when it came to playing games with lots of physical exersize. I could no longer play soccar even as goaly by the age of 12, and have been absent from sports since then. I missed a lot of PE classes and now I have hardly enough stamina to jog down the block. Running has never been an option for me. These past few years, the pain has increased, with me being unable to walk on my left leg a few times. Some days (this morning for example), I can't even turn my wrist and have to keep my arm raised and close to my chest for it to stop the pounding pain.

I have told my doctor of all the symptoms, and may have to go through testing all over again. All Childrens Hospital has destroyed the files because I haven't gone to them for 10 years for treatment. The doctor I have now has diagnosed a connective-tissue 'problem', although I have been given no treatment for it. This year, the symptoms have gotten much worse than in previous years.

My symptoms generally included muscle pain in the right arm and most commonly pain in the left leg, although it also occurs in the right leg as well. Within the last year, the symptoms have gotten worse. They now include muscle pain, nasea, and lack of appetite.

Please share your stories and I look forward to hearing them.

01-26-2010, 06:35 PM
hi wolfwhisper,

there have been several times that threads were started for members to tell their stories...i am glad you started another one. We have many new members, and i look forward to hearing their stories.

I want to say, i am honored that you decided to join whl....what a compliment. With your years of dealing with lupus since you were 3 years old, you bring a totally new perspective to our conversations. I look forward to sharing with you.

My story is quite different. My symptoms started when i was in my late 20s, then seemed to subside for awhile. In 1996 when i was 44, i was hit like a truck. I was diagnosed with fibromyalgia in 1996, but it was 2008 before SLE was added to the diagnosis. I am now on plaquenil and mtx for treatment, but lupus continues to steal bits and pieces of my life.

thanks for starting the thread.

01-26-2010, 10:53 PM
Thanks for responding. I'd been searching for a thread like this, but didn't find one. Then again, usually I just scan right over it! Oh well. Maybe everyone will start sharing their stories again! :)

01-27-2010, 08:48 AM
I was 58 when diagnosised with lupus and myositis. It started with unexplained fevers every day for months and then it really got worse with loss of appitiet and it was 85 degrees outside and i would sit there on my swing and my fingers were blue and i was cold. I would also have night sweats every night and wake up soaked. Then i bumped my are in the kitchen and it got really sore and they thought it was cellulitis and put me on and antibiotic for 14 days but i still was running a fever of 101 and my family doctor told me to go into the emergency room and i did and when the doctor looked at all my fingernails that had multiple nail splinters under them he said i probably had endocartitis and addmitted me for 11 days they ran all kinds of tests and blood work and referred me to my present rhuematologist who i think is wonderfull and this is where i am today. I am on predinisone 7mg for 3 years at different doses and plaquinel for 2 years and i am taking methotrexate 20mg for 16 weeks now. I am sorry this is so long Bonita I also have other problems with a cage and srews in my back with a fussion at t11andt12 from a work accident. Now with the ra i have degenerative disc diease and stomach issues.

01-27-2010, 09:44 PM
I was diagnosed in 2006 after sun exposure (Calif.). I could not walk, mouth sores, red face, skin lesions on neck, shoulders and back. Doctors couldn't put it together. After sun exposure; it would be back; unable to walk and on Kenalog shots or prednisone. I would crawl from the bed as my muscles were completely locked up and joints were swollen and painful as if I had run an 80 mile marathon. The previous November 2005 my daughter had been hospitalized with airborn MRSA as well as having it in her bones. I stayed with her in the hospital at night as she was six years old. In 2005 I was told I had a bullobous piimpgoid on my hand that wouldn't go away after many meds. Three months after Lupus dx, I then came down with Gerd. Six months after Lupus dx; Fibro, chronic fatigue, Sjogrens, and leaky heart valves dx came (2007) followed with chostrocondritis and pleurisy around the heart. In 2008, I was dx'd with vasculitis and anti-phospholipid syndrome (2008).
Life is not about waiting for the storms to pass . . . it's about learning how to dance in the rain.

01-27-2010, 11:58 PM
I was diagnosed at the age of 17 my senior year of high school. I felt like I sprained my wrist one day and the pain just grew and grew from there until I could not move most days because of the pain. I had a awesome pediatrician at the time and she knew what it was right away, blood tests just confirmed it for her. I had intensive problems with my blood and blood counts for a few years right after diagnoses. I had many doctors tell me that they had never seen anything like it before. Turns out my lupus was attacking and 'killing' my red blood cells. Years of steriods, iron injections, medication after medication...too many to name really, I'm here 17 years later "medically controlled".

01-28-2010, 11:14 AM
]Hey my name is lizz, i am new here i am 20 i have been going through test since i was 11 my blood come back positive then negative not sure why lol but i have severe joint pain in my knees wrists fingers ankles elbows everywhere lol, the sun hurts my eyes so bad, i get dizz alot, every once in awhile my legs or arms will go numb, i also have alapecia which means i have no hair anywhere (started when i was 10) thats manily my story just wondering what everyone elses is, i was also wondering if anyone else ever had the neg. blood work and still have lupus or why it goes from neg. to pos?? Sorry so long just tryna get everything in cant wait to hear from you!!!!

01-28-2010, 01:49 PM
Hello I am new my daughter was diagnosed with lupus just before her 18th birthday her symptoms started at 16. She has also had both positive and negative blood work. She suffers from severe joint pain, chronic pluracy, dizziness, confusion, mouth sores, and although she still has hair it has been falling out. She has gone through numerous tests the last 2 years and was finally diagnosed. Her symptoms started after receiving the gardasil vaccine. There have been others diagnosed with Lupus after the vaccine and I am searching for more of them.

01-29-2010, 02:17 PM
Welcome Lizz,

I see you are new here. I am hoping someone will come along such as Saysusie or Oluwa and answer some of the positive/negative questions. I wanted to welcome you.

Thank you for sharing everyone as many of us have a lot in common.

Take care,


01-30-2010, 02:26 PM
Oh boy, where to begin... for me, alot of this has began to make more sense when I looked back at everything after talking to the rheumatologist. I think I began experiencing symptoms in the Spring of 2005 (age 24). I had begun to have skin sensitivities and that escalated into an incident where I was covered in hives head to toe. They couldn't figure out what it was I was having a reaction to.... no new medications, etc. My doctor at the time (whom I no longer see because she was not supportive and told me it was all just "stress" and I needed to learn how to relax) decided it was laundry soap (even though I hadn't changed brands or anything. In retrospect, I think it was a reaction after having gone in a tanning bed.

I spent the next 4.5 years going to different doctors and getting all "normal" results back... no one could find an explanation for my symptoms of debilitating fatigue / joint pain / muscle pain / rashes / headaches .... the list goes on.

Then, I decided to see my husband's doctor and we finally started getting somewhere. He was the first physician to look at me and truly listen (what a concept!).. he assured me that he understood there was definitely something odd going on, even though the lab tests all came back within normal limits. After looking into things as far as he could with the resources he had, he sent me to the University of Michigan hospital in Ann Arbor to see a rheumatologist. That was this past November. I walked out of that appointment with a tentative diagnosis of SLE and a prescription for Plaquenil. Since then, the fatigue has been getting better and I hope it continues to improve. My rheumy is awesome, we communicate through email between visits and he has told me that he's more and more confident that I am dealing with SLE. At least it's an answer....

It's been a tough process trying to adjust to the thought of having a chronic illness. My husband and I are still working through it. Every day brings a new challenge, but I finally feel like I have a medical team that truly cares and believes me when I say I'm feeling crappy. After 5 years of searching for an answer, it's somewhat of a relief to have some sort of direction to go in, instead of sitting here wondering if I'm just crazy!

02-01-2010, 12:02 PM
My story started when i was in my twenties, i would get rashes on my chest and have low grade fevers and fatigu and couldn't keep food in gi tract for long.l they put me on beta blockers, anit depresants, was on that until i got pregnant at age 29.

after i had my son everything went away until 2005 got so dehydrated went to er they said i had a infection in gi tract gave me antibiotics sent me on my way.
went to gi dr. he ran every test there was said i had something wrong with my auto immune systems go see a rheumy. so i did he said he couldn't find anything go see the internists. so i did she had me pay money to send blood work to auto immune disease lab in ca to run test. well they found i had lupus. so for all those years of thinking i was depressed had ibs and rashes an fevers for no reasons and an the fatigue wasn't in my head.

so now i am in my early forties divorced live with a great man and two of my children oldest stepson on his own. have a job that my boss understands what i have an is patient with me when i am in a flare. i
i went to pain doctor who told me i have fibromylia an osteoarthritis and my nerves running down my legs aren't working right so i take tramadol for the pain for now. i tried plaquinal made me to sick so i stopped. my hair is falling out an is curly now i had poker straight hair. all an all i wake up every morning and thank whoever that i woke up and i could be alot worse than i am.