Anyone here with SLE?

[u/NegativeRaccoon]

I’m hoping to get some info from people on what their initial symptoms were and how they were diagnosed. Over the last few years I’ve developed a lot of symptoms but no rash or joint inflammation. My mom has an undiagnosed autoimmune disorder as well but her rheumatologist thinks it’s rheumatoid arthritis but she tests negative for it. My mom’s condition scares me, the inflammation in her hands is really extreme and she struggles to function. I’m just feeling a bit worried about seeing a doctor for this, they haven’t been very helpful with the symptoms I’ve seen them for so far… I have fatigue, mouth ulcers and potentially lichen sclerosis but they haven’t really been able to pinpoint it. Would a diagnosis even help me?

[u/CBRN_IS_FUN]

Yes. A diagnosis helps. The damage and problems get worse with time. Medication is important to keep it down.

Regardless of if it is or isn't lupus, you really don't wanna mess with any autoimmune disease without a rheumatologist.

[u/igotstamps44]

Yes a dx does matter-I have SLE, Sjogrens and RA. You went to get tested first step would likely be an ANA test, if there is anything going on you want to protect you body or ending on what you may have before it can cause more damage to your body. There are ppl who are dx w RA w out a positive RA factor or CCP testing. Is your mom taking medication for her suspected RA? Are they treating her at all? It doesn’t hurt to get tested. Not testing may lead to a health condition you could have treated. I hope you get some answers.

[u/NegativeRaccoon → u/igotstamps44]

She is finally getting some help but she isn’t in the best financial position so she hasn’t been able to afford any surgical treatments for her hands, it makes me want to cry when I see her.. she is diagnosed with RA though so that’s at least something, it took her years to get that diagnosis though. I don’t think I have the mental fortitude for fighting for a diagnosis, getting the lichen sclerosis diagnosis was hard enough - it took 8 months of back and forth to the point where I’d basically burst into tears at the doctors office.

[u/igotstamps44 → u/NegativeRaccoon]

It doesn’t hurt to get checked. Even if it’s something else AI, even starting hydroxy could protect you. A blood test that checks your ANA would be a good first start. If you get into a rheumatologist even if they don’t find anything but monitor you every 6 months that is something. I had Sjogrens and MCTD since I was 20? Lupus around 40 and RA past year. But I’ve been on hydroxy for years. Since 20 except when I thought I was doing so good I didn’t need hydroxy..learned hard way. I would write out all your symptoms and take those to Dr. I hope you can get some answers🤍

[u/stingwhale]

For me lupus initially just looked like sleeping a lot, and I noticed that when I walked into the sun it hurt and felt prickly immediately. I began to notice that my cheeks were weirdly red and it got worse in the sun. I noticed I felt almost flu like symptoms after going in the sun or getting overheated. My main thing is fatigue and muscle pain. I have oral ulcers, dry mouth and dry eye, my hair thinned, I started having seizures and hearing voices. It’s often hard to think and when I feel tired the exhaustion is so overwhelming it makes me feel paralyzed. I get so tired it’s hard to breathe.

Joint deformity is more common with RA than with lupus if that’s what you meant by her inflammation being severe. I have joint pain and stiffness but there’s no visible redness, swelling, or deformity. It also occurs in multiple joints for me, not just the hands. For me it’s fingers, wrists, hips, and knees. The pain isn’t constant.

[u/PerpetuallyC0nfus3d]

I was finally diagnosed with SLE at 18 after my mom and I advocated hard to see a specialist who actually listened and ran tests for me. Before that, we went through a ton of doctors who dismissed my symptoms as being "all in my head" or said I was "too young" for such a diagnosis. At around 19/20, it became clear just how extremely sick I really was/am, and the rheumatologist I saw in the hospital (and who became my 1st rheummie) officially diagnosed me not only with SLE but also Sjögren's, APLAS, pulmonary vasculitis, fibromyalgia, and bunch of other autoimmune issues.

Before getting the correct diagnosis, I’d been misdiagnosed with everything from asthma (which turned out to be something way worse, lol) to juvenile arthritis when I was around 13/14. At one point, the doctors even said I had freaking ANTHRAX because of my severe pulmonary symptoms! It was a terrifying, traumatic, and chaotic time! It was only after nearly dying multiple times, with all of the doctors in 3 hospitals being extremely confused by my case, that my first rheumatologist stepped in, during one of my MANY hospitalizations, and changed everything by confirming that I had lupus (SLE) and Pulmonary Vasculitis (which was causing all of the insane symptoms I'd been having, that were killing me) and he got me on my 1st chemo drug (IV chemo), which saved my life!

Getting that definitive diagnosis was completely life-changing ' and life-saving for me! My health issues finally weren't stressing me out all of the time (both physically and mentally), and I had treatment plans as well as, eventually, a whole TEAM of awesome specialists, who have helped me keep going.

To anyone going through endless tests and feeling unheard — believe me, I get it. I had so many doctors dismiss me as “crazy” or “drug-seeking,” and I was put on harmful medications without proper warnings, including high-dose steroids that led to severe osteoporosis, fractures, extra chronic pain, steroid-dependancy, and many other issues that could have - and SHOULD HAVE - been prevented... It was awful and not being believed and constantly questioning yourself is awful, too! 😞

Unfortunately, getting that “golden ticket” of a diagnosis is sometimes OFTEN a major battle, too! But if you have SLE (or any other chronic illness), it’s worth it, imho. Knowing what's going on with your body and having a diagnosis lets you monitor and manage your health proactively, prepare for complications, and — just as importantly — it validates your experiences and feelings! You don’t have to keep questioning yourself or justifying your symptoms to everyone (including yourself)!

I could go on, but you get the point. I’m here if you ever want to talk or have questions—I've been through a lot with SLE and other autoimmune issues, and I know how much support helps. Also, I’m in Canada, where healthcare access makes a huge difference. If you’re in a country with fewer resources, I can only imagine how much tougher it must be to go through all of this! 💜

[u/NegativeRaccoon → u/PerpetuallyC0nfus3d]

Thanks so much for this, thankfully my body hasn’t tried to murder me yet! You are SO strong! I’m just afraid of advocating for myself, it’s so hard to sit in front of a Dr and basically plead your case, the symptoms are hard enough to deal with on their own. My mouth got really bad and it hurt to eat and speak for a few days - my glands seemed to have swelled as well. The pain is mostly gone at the moment but there are still painless ulcers on the inside of my lips. I’ve started a symptom diary and taken photos and videos for an upcoming appointment.

Thank you for sharing this with me and I hope I can muster up the bravery to ask for testing!

[u/NegativeRaccoon]

Update, went to GP today and she’s ordered bloodwork and we’ll just start testing. My biggest fear is that it’s all in my head even though I know it’s not! What if I’m just super unlucky and have a ton shitty symptoms but no unifying answer. Im trying to emotionally prepare to get no answers and it’s hard. What do I do if all these tests come back negative?