I'm curious to know how everybody found out they had lupus.. I know for me, issues started years ago with gynecology related issues, then I started getting sick so frequently, but antibiotics would help. As time went on medication stopped helping me as much and eventually, starting this summer, I just never got better. I had swollen tonsils with white patches on them, doctor tried helping me but nothing would work. Eventually sent me to an ENT who also couldn't figure out why I was so ill… read more
Ever since I was little, vaccines wouldn't take. I found this out when I was applying to colleges and for my specific programs (health-related), we needed to prove vaccination history/immunity. For this, they draw blood and look for certain antibodies/antigens to determine immunity. My mom has always had me get all of my shots on time, so I never assumed there would be an issue. Lo-and-behold, I needed to get most of my vaccinations another 2-3x as an adult to develop immunity. When I was around 7 years old, I developed seizures and a tremor that was uncontrolled. It was miserable. I lived in hospitals for about 3 years, and they never came to a conclusion. Not epilepsy, so they just treated the symptoms with a bunch of benzodiazepines. (This has since resolved!) I got pneumonia A LOT as a child. I developed PCOS around age 16. Things seemed stable for quite some time until my junior year in college. I started becoming extremely fatigued, to the point where I would sleep 16+ hours a day, miss class, and not wake up to alarms. I went to our student health clinic, where they ran usual CBC and CMP tests (mainly looking for anemia) just to make sure nothing was too out of whack. All of these came back remotely normal, so they just brushed it off as depression and put me on Lexapro and Xanax. 2 months later, I returned because these medications weren't helping. I kept reiterating that I didn't feel depressed or anything, I was just tired. And by tired, I mean EXHAUSTED. I tapered off the antidepressants and anxiolytics with no improvement. Soon after that, I woke up with a terrible pain in my left arm pit area. I let it go for about a day, then figured I should go get it checked out, so back to Student Health I went. The immediate concern was a blood clot, so they sent me to the ER to get evaluated. In the ER, the armpit pain was getting better but I was increasingly short of breath and my lungs hurt SO badly. All of my blood markers for clots came back negative, so they sent me home with a diagnosis of "anxiety". Over 2 days, the shortness of breath and chest pain kept increasing, so back to the ER. After more tests, they diagnosed me with pleurisy. I followed up with Student Health as ordered, and I requested they run an ANA test. I am in a health profession, so I knew what this test was. I was so fed up with no answers, and to this day I cannot tell you what inside me told me to ask for an ANA test, but I did and sure enough, it came back quite high. I was then referred to a rheumatologist. Sure enough, on my second visit I was diagnosed with Lupus.
YES! The tonsillitis is where it all came together for me. IDK about you, but for me it felt basically like strep throat, or mono. I came up negative for both multiple times, told me because I had mono in the past that maybe it just got reactivated. Took the antibiotics and right after they were done they came back almost instantly. Along with that came oral thrush as well, and for a "healthy" adult to get oral thrush (which is essentially a yeast infection in your mouth) is a HUGE sign of an autoimmune disorder. Why I wasn't tested right then and there I do not know. I'm annoyed that I basically had to yell and cry at my follow up appointment to the doctor and say no. Your treatment didn't work. I've tried to get rid of this "tonsillitis" for over 3 months, something is clearly wrong, you're going to run tests on me because I cannot live another day like this. And that's when my ANA came up positive and he said everything else I was having issues with (ulcers, headaches, high blood pressure, chest pain, low grade fevers, dry eyes, severe fatigue, and chronic infections) could be explained by that. So please, do not let them write you off or tell you some BS that it's not just because they want to throw medication at you as a trial and error. That's what happened to me and I got so fed up. I think when it comes to this, and the amount of doctors I've been to at this point who never took me seriously enough to listen to me I don't even know how many times I expressed concerned to doctors over the past year once I realized I was getting sick way too often and that something was not right. That you really have to be your own advocate when it comes to this stuff. If I didn't do any of the research that I have done I'd still be out of luck, feeling like crap, with no answers, and feeling crazy. Literally a few days of google research is all it took me to realize that I had good reason to be concerned and knew it was time to be tested for something more underlying. Doctors spent 4 years of what feels like covering bullet holes with Band-Aids.
I feel like I wrote this post! I have felt pretty much the same way constantly thinking that I am being dramatic and more nervous on my good days because I start t think that I wasn’t really sick on my bad days. It’s very weird how lupus behaves it’s enough to make you think you are crazy. But you are not!
Glad you mentioned your tonsil issues because I am having a similar issue. They keep swelling and I get little stones in them, my rheumatologist says it’s not related to lupus so off to ENT I go. I don’t think ENT will have an answer either because I am convinced it’s just one of those weird lupus symptoms that not enough of us have had to make it well known.
Hang in there!
Hi Denise! I could not get out of the bed because I was sooo tender all over. My hands had swollen so much I couldn't get my rings on and my ankles as well. My doc decided to test me for Rheumatoid Arthritis and was completely shocked when I tested extremely high for Lupus SLE. Like someone else said earlier-I have symptoms for a number of years but nothing too bad until that first really bad flare. I do not have health insurance so my doc has researched and keeps me on track with inexpensive meds and regular blood tests. I am fortunate that I am still working full time, but it is very exhausting so I have to spend the weekends in bed. Not sure how much longer I will be able to continue. Take the good days when you can and when you are in remission-enjoy everything you can! But always take time to take care of yourself. Hugs! :)
Mine was diagnosed in 1990 from my GP when he did my first DNA test. he said it was very elevated and soon after that I had back surgery and two hrs later the butterfly rash appered and under my eyes it looked bruised. I told the nurses if they had not ever seen a buttery rash come on in and have a look. After that I was diagnosed by a rheumatologist with Raynauds in 2005 I was diagnosed with short term memory loss and man did it affect my spelling. I started making mistakes at work. I worked in a hospital. in Ophalthamology. So I gave my notice. I was afraid I might give someone the wrong eye gtts. that could hurt someone or even kill someone. if I gave the wrong ones. So I went on disability. My boss was good about it because he lost his sister to Complications of Lupus. I had the moonfaced and patients just thought I had a fat face. I don't think My boss ever saw me with a normal face. After they found that Celebrex along with a diaretic messed up my kidneys they took me off all Lupus meds. but did not tell me how bad the CELEBREX affected my kidneys until recently. Im stage 3. found out Oct 17th. Had I known I would have tried harder to drink water. and maybe prevented being state 3. maybe I would have been stage 1. I didn't even know there was stages. I was so upset that my Doc. did not tell me. but now I dont have him anymore. He's gone into virtual practice. He charges to much for that. so I need to find a new Dr. and We moved to the mountains so its hard to find one for Lupus. but I'm not giving up. I have found a pain management Dr. I have not seen him yet but soon.
I am a new member here so already I have found people talking about symptoms I have that I did not know was Lupus related. That helps and also I have found much worse. Guess that what this is all about right SUPPORT
Hugs to all
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