How did you first discovered your symptoms?

My story is quite the story... I found out about my symptoms through the post Selena Gomez made on Instagram about her kidney transplant, I had shingles last September and I always blame the shingles for all my symptoms, but when I saw Selena Gomez post I was like: what is lupus? Once I googled it I discovered that my symptoms were those of lupus (including the butterfly rash which everyone kept on telling me to go to a dermatologist because it could be rosacea) so o was diagnosed a month ago, I’m still in shock and it is a hard disease to accept, regardless of feeling down sometimes, I fight it each day, I started my own swimsuit company, work as a manager in a big dental office, and even when I feel bad, I tell myself I got to finish this day no matter how exhausted I feel! Looking back at how I first suspected I have lupus through a celebrity, I thank God each day that she posted that because I got my diagnosis quickly, faster than most people and now I’m being treated for it (I had a lot of the symptoms and my blood test confirmed it) I guess that help a lot too. Therefore, I have done everything that I can to bring awareness so others find out soon about their disease if they have it because knowing that one person can change your life gives us purpose and guidance, I know it’s hard for some people to openly show and speak their symptoms but I encourage you to do so because you never know when you will change a person’s life like Selena Gomez did for me and you don’t have to be a celebrity to accomplish that.
Coping with being a lupie is hard, but the support from my family and coworkers have Made me realize I have a lot to fight for and this won’t bring me down! Thank you for reading! 


  • awilkinsawilkins Member New Member
    I started having symptoms in 2013; but, wasn't diagnosed until 2017.  Four years of not knowing what the heck was going on with my body.  It was horrible; but, I've since learned the average is about 6 years before a conclusive diagnosis for many.  Lupus first attacked my kidney.  I had major swelling in my lower extremities.  Like major! My legs looked like tree trunks.  I literally could not fit my shoes anymore.  It got so bad that I wasn't urinating, I was near kidney failure when they finally realized it was my kidney causing the water retention.  I slept sitting up for an entire month b/c the swelling had rose all the way to my abdomen making it hard to breath if I laid down.  Following that I had hair loss, brain fog, a rash on my cheek.  Followed by onset of high blood pressure (kidneys) and a pulmonary embolism.  It wasn't until 2017 when I started having arthritis like pain, so bad when I squat to use the restroom my knees would pop.  The pain was so bad I'd clench up and would have to sit on the toilet until I was relaxed enough to go to the bathroom.  I was finally sent to a rhemetologist who indicated my levels for lupus were extremely high.  There were several test he used all came back positive for lupus markers, and extremely high inflammation.  While, after battleing a mystery disease for four years I did not want to take more medicatoins (particularly prednisone); but, I'm glad I've been diligent about using my immunosuppresents and the plaquenil.  I haven't felt this good in literally years...years.  I'm working with a natural path doctor on getting off the blood pressure medicine and nexium.  With the eventual goal of getting off all meds.  
  • DiamondNHoustonDiamondNHouston Member New Member
    edited June 2018
    My mother died in October 1991. I began with swelling in both the ankles and feet, blew it off to bad eating or rather still eating like a teenager, leading a busy lifestyle with a young child we ate on the fly a lot, dying mother and deplorable job that had me doing slave hours 18-2 on the clock 6-7 days a week in the bank vault. It was stressful to say the least working underground. Fast forward one year and I had to take a blood test for a job. My results indicated that I was slightly anemic. I was anemic when I was pregnant. I took iron pills. The doctor stated that I could take those again for a while and I should be okay. I keep moving and now it's Thanksgiving 1992. Thanksgiving Eve I prepped everything for the big dinner. I layed down at 5am Thanksgiving morning. I awoke to pain that has never gone away and swelling that does as it pleases. By Christmas, I could walk on my on and someone had to be with me at all times. Understand that I am someone that would ride out a headache to avoid the pills. That was clearly not going to happen this time. I finally went to the doctor and he had me to take 8 Advil every two hours.  Remember I barely took a pill for a headache and that includes the monthly issue. After three days and no relief I was done.  I went back in and he ran the ANA test and 72 hours later I had the diagnoses.  My life has not been the same. It was so hard back then. I entered therapy to deal with it,  Support groups were not enough for me as I was mourning the death of my mother and now my dad and his mother we going down on me . I am an only child. It was a lot to take, but I am still standing. In 2000, I learned I had cancer, I am good.  I have also lost my sight, twice. I miss freedom more than anything.  I have not been hospitalized. I try to monitor my body. I have blood work.  This past weekend I had a flare and was so exhausted. This heat in Houston and the humidity are slowly killing me. It's torture especially since my A/C went out. I was diagnosed January 28, 1993. I never really understood stress until it happened to me. I try my best to avoid stressful situations.  I has to leave a long term job as the stress was slowing eating away at me. I through I was having a stroke one day. MY doctor advised me to find something else, but I stayed until I could not take it anymore. I thought I had one and it was worse. I am looking for something that will work with lupus.
  • wwild1wwild1 Member New Member
    I was first told I had Lupus in 2010 after being told I had rheum arthritis for 2 years. Since then, I have been a walking bag of tricks. After carpal tunnel in 2009, I believe it started attacking my nervous system with shingles twice. Then I think it moved on to my digestive system-diverticulitis 4/5 times. Then, in the midst of chronic anemic and vitamin B deficiency, face rash (not the typical butterfly one) they call it impetigo (from light to dark-weird), I had a clot, lost my foot, blew a hole in my colon, (all this in May 2016) and now I have Lupus nephritis. WOW! I do believe stress has ALOT to do with this disease. At this point it is just a waiting game to see if treatment works! Since March, I am taking all the medications that were mentioned in previous posts plus some. Lupus was confirmed by a kidney biopsy 2 years ago but I had so much going on I think they just had to wait for me to get myself in “order.” That May never happen. I know I am strong tho. I’m still here. Thanks for letting me share my story-which ain’t over yet. 
  • LizelleLizelle Member New Member
    My name is Lizelle Tayler

    I was diagnosed with SLE on the 5th June 2018

    I decided to go to the doctor because all my joints started swelling and it became so painful that I couldn't walk. 

    At first the doctor said that it's rheumatic atheritis but second and third doctor confrimed that is was definitely and autoimmune disease called Lupus. I was admitted into hospital immediately. 

    After 2 days they discovered that there was 2 blood cloths on my left lung due to lupus,  because in hospital i had some chest pain. I was immediately sent to high care for 3 days. They put me on warfarin since then.... 

    I was released from hospital on the 12th June 2018..... 

    The fatigue and swelling of my body something that I struggle with.... 
    My senses are affected as well and some dark black spots have developed on my toung.... Having physical strength is not easy.. Considering that I am a very strong and active woman.

    It has been about two weeks now and i wish that i can wake up tomorrow and it's all just a dream. 

    But it's not just a dream... I had to just come to the reality of what is happening to me.

    Everything is just so new to me It's quite over whelming, especially with medications, blood tests and finances. 

    I know that there is a light at the end of this dark tunnel. 

    I have been surviving by my faith In Jesus this far, I know that God can heal us. I know that there is hope and healing. I can't see it now. But I know that it's out there. 

    This is my story
  • hannahmae8998hannahmae8998 Member New Member
    My symptoms started when I was away at college during a really stressful semester. I started feeling really disconnected from everything and everyone. I started to get really twitchy and having bad anxiety and just felt like I couldn't leave my dorm without someone noticing. I started having bad pains in my fingers and periodic numbness/tingling in my hands, arms, tongue, face, and fingers. I assumed it was anxiety (I read on forums that the twitching and numbness could be caused by anxiety and stress) little did I know it wasn't. I called my mom almost every day because I couldn't understand what was wrong with me. It was so frustrating! My symptoms started getting worse and I was having vision and speech problems, along with vomiting and migraines. I had 2 MRI's - the first showed lesions on my brain and the second with contrast showed more lesions. I was first diagnosed with vasculitis. and was admitted to the hospital immediately. They admitted me on the stroke floor... I had a spinal tap, TEE, Chest X-Ray, and a Cerebral Angiogram followed by what felt like a million blood tests. The TEE found that I have a thickened mitral valve sending blood clots to my brain causing me to have "mini" strokes. They diagnosed this as Libman-Sacks Endocarditis. The Angiogram checked the vessels in my brain and ruled out vasculitis.  Libman-Sacks can only be caused by a couple things - one being Lupus. I had a few tests that indicated Lupus and a couple people in my family also had it. I was in the hospital for 6 days before I was diagnosed and released. 

    I never thought that my numbness, twitching, slurred speech, and double vision would be caused by stokes. I assumed it was just anxiety since I was generally a healthy person and granted, 19-year-olds usually aren't prone to strokes. 

    This was all fairly recent and who know's what could have happened if I ignored the signs. I never thought it would be me. Now all I want to do is learn and be able to educate those who don't understand. 

  • abt77abt77 Member New Member
    I was a junior in college, 20 years old, and during Thanksgiving break my knees were killing me. I tried to wrap them and make splints so that they wouldn't bend while I was asleep.

    As soon as I got back to school, I went to student health to figure out why I was in so much pain. After running a number of tests ruling out everything under the sun, it was determined that I had lupus (SLE). That was 22 years ago.
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