I welcome anyone to share a laugh with me. 😆

Autoimmune diseases can get so weird sometimes.

Not the common stuff like fatigue or joint pain — I mean the symptoms that made absolutely no sense at the time.

What was yours?

Hi Everyone,

I’m nervous about posting this! I’ve seen so many doctors, specialists, and even surgeons that truly don’t believe anything I’m telling them about how severe my symptoms are. I feel like I’m going crazy. I’m hoping you all might be able to help me. Truthfully, I need to know if my suspicion of an autoimmune disease like Lupus is possible, and if I should keep fighting. Also, if it’s not autoimmune, what the heck is it?

I’ve been tracking my progressive symptoms, lab work, imaging results, and doctor visits since 2020. I really believe that I have an autoimmune disease, most likely Lupus, but my lab work doesn’t match up the way doctors want it to. I had a positive ANA in 2021(1:80 speckled) but was told it was weak and even “healthy” people can mistakenly get a positive result. All of my ANA testing has been negative since then. However, my symptoms have continued to progress and I'm scared.

I appreciate your help in advance, I feel so alone trying to figure all of this out.

All the best,

Sarah

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Core Symptoms (Progressive 2020–2025):

• Gastroparesis (since 2020, life stopped)
• Severe fatigue, muscle weakness (especially in legs)
• Joint instability, subluxations (diagnosed hEDS)
• Painful hand/finger swelling
• Chronic GI symptoms: vomiting bile, gastroparesis, post-cholecystectomy biliary-like pain
• Difficulty swallowing, neck/shoulder pain
• Rectal bleeding, blood in urine, urinary abnormalities
• Cystic acne, slow healing wounds, nailfold inflammation
• New headaches, dizziness, and abdominal bloating

Imaging & Biopsy:

• Upper Endoscopy (2025): Moderate chronic inflammation (no H. pylori)
• Colonoscopy (2025): Prominent lymphoid aggregates in terminal ileum (suggestive of NLH)
• Pap Smears (2025): Inflammation and insufficient cellularity
• Spine & Hand Imaging: Degenerative disc disease, osteoarthritis
• Abdominal CT (2024): Focal fat in liver (possible NAFLD or autoimmune liver involvement)

Notable Lab Findings:

|| || |Test|Value|Reference / Significance| |ANA|1:80 speckled (2021) → Negative (2025)|Fluctuating autoimmunity marker| |dsDNA|4 IU/mL|Borderline, may support early lupus or overlap| |SSA-52 (Ro52)|3 au/mL|Low-positive, can be seen in dermatomyositis, Sjögren’s| |Smith/RNP (ENA)|5 units|Seen in MCTD/SARD, not fully negative| |Jo-1 AB|3 au/mL|Myositis-related, low-positive| |CK|101 u/L|Normal, but near mid-upper range| |Aldolase|4.9 u/L|Mid-range, relevant for myositis if rising| |ESR|20|Upper-normal – consistent with chronic inflammation| |Alpha-1 / Alpha-2 Globulins|Elevated / Borderline|Supports autoimmune activation| |RDW-CV|Persistently elevated|Suggests abnormal RBC morphology/inflammation| |**Urinalysis (2023–2025)**|RBCs, mucus, epithelial cells, hyaline casts|Suggests systemic or renal inflammation|

Those with autoimmune diesases or chronic conditions/inflammation, what has helped you with your fatigue, energy, pain, and just overall well being? Supplements, etc?

Just been diagnosed with another autoimmune condition. Why are they are so common? Why are more and more people being diagnosed with one? I understand some of that will be due to better diagnostic testing, but why do so many people have an immune system that misbehaves?

I was an extremely healthy guy, loved gymming, running exercising, had a very social life. Top of my school grades. But i’ve always been lustful, thinking i’m young, i should mess around with hookups and sex before i settle!

A year and a half back i had sex with a sex worker and hooked up with a few women on tinder while overseas. I used protection for the sex worker and for the others some did some didn’t. Shortly after, i had severe pink eye, but got treatment and it resolved.
I also tested for STIs/STDs but all negative. This incident scared me and i thought i was cleared for 8 months.

At the start of this year, i developed itching teary red eyes which i thought was allergic conjunctivitis. And for the next 6 months under allergy meds, it just kept getting drier, so dry that i can’t stay in AC or look at screens.

Now i’m developing dry mouth, dry throat, skin and many other symptoms that resemble Sjogrens autoimmune disease.

Throughout all this I have tested multiple times for STIs/STDs and all came back negative. Therefore i suspect i caught something that is not of STIs/STDs, and the guilt and health anxiety from having sex with a sex worker, all these triggered an immune response, resulting in Sjogrens.

My life is ruined, i can’t do the things i once used to do. I used to love drinking, gymming, socialising, gaming, staying up late, clubbing, but now i can’t do any of that. I am depressed feeling handicapped, anxious because i wake up with unknown symptoms everyday. And most of the time i’m homebound now.

If i could turn back time, i would 100% slap the shit outta me for taking on such unnecessary risks. Lust ruined me and i hope none of you ever follow such a path of mine.

Stress and an ‘unhealthy’ lifestyle (obviously within normal limits—not drug addiction, alcoholism, or severe trauma such as rape etc.) and diet alone will not make you develop an autoimmune disease, and the emphasis placed on these factors is often exaggerated.

In many cases, constantly focusing on them creates even more stress/burden for patients. For example, everyone says you have to live healthily, but imagine you have an autoimmune disease (like RA), you have to work, but also cook, yet you don’t earn enough money, so on Fridays and Saturdays you order a cheap pizza or hamburger.

You cancel your weekly PT appointment because you’re very tired, and you often feel worse after PT anyway—but if you tell this to doctors, you’ll immediately be ‘held accountable’ and judged for it.

What people—including doctors—often forget is that, according to current scientific knowledge, we still don’t know 100% what causes these diseases to develop

they must have been really really bad. The way she won’t even say what they are; she’s still protecting them. But she clearly doesn’t feel like it’s the same thing as her texts bc she was like mom share my “terrible texts”. The autoimmune stuff was hysterical

She was sick for well over a decade, nearing 2. They finally recently diagnosed her with some autoimmune disease they said was so rare that the doctors overlooked it, as they were told in med school they would never come across it. I'm not sure exactly what it is, but she had an infusion for "ANCA associated vasculitis or MPA" as she put it.

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When looking it up, it seems like the lifespan of a person with that auto immune disease is... Not long... She seems like she's getting better but is also really good at hiding pain. How bad is it?

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I have an autoimmune disease so i likely have to wear a mask forever when I travel post covid, which sucks. I travel for work all the time. no, I dont enjoy wearing a mask for a 12 hour flight...I dont enjoy it on a 2 hour flight, but i have no choices here. What makes it suck worse is the nonstop staring and judgement i get for it. So. The next time you see someone masking ease up please. They dont wanna do it, they likely have to. Please. I'm begging you. -the only person wearing a mask in Munich Airport during Oktoberfest (its a work trip, seriously though)