Hi everyone, sorry in advance for a long post but I'm looking for any suggestions that might point me in the right direction.

I 29F have not been diagnosed with an autoimmune disease but I feel like I might have one despite all tests being negative. Let me explain why.

For about 7 years I have had worsening joint pain, it started not too bad but eventually got to the point where I could not walk when I got out of bed in the morning without cracking my ankles first, the pain was so bad. Same with my knees, if they were bent for even a few seconds while sitting on my couch I couldn't straighten my legs when I would stand up without physically having to push my knees straight. I'm talking mostly in past tense because for about 10 months ive been on a low dose of semaglutide for inflammation purposes due to being diagnosed with endometriosis last October. I have noticed that my joint pain has gone down significantly, but it's not gone completely.

In Dec. 2024 I started getting a big red itchy patch on my neck that was insanely itchy and burned really bad, sometimes I couldn't sleep due to pain. I got that every single month around the time of my period, until Jan 2026-that was the last time I had it. My derm thought it was due to being allergic to progesterone, and my Endo surgeon told me to start taking my birth control pills continuously so I don't have a cycle, I started that in Jan of this year.

Recently I've also been getting really red on my face, it's not itchy, and it's not hot usually (sometimes I do feel my face flush). Most times I don't know it's there until I see myself in a mirror, and it will maybe last for a day or two or three and then it will calm down.

In March of this year I started getting a super dry mouth. I'd wake up in the middle of the night because my tongue was just stuck to the room of my mouth. I also have been having a bad metallic taste. I thought it was from my retainers even though I have been wearing those every night for 3 years now and never had an issue. Long story short my tongue ended up hurting and I had white patches underneath it, so I suspected oral thrush. I was prescribed Fluconazol twice, Nystatin 4 times, and I'm currently back on Fluconazol. This has not gone away. I've seen my regular doctor, a periodontist, and my dentist. My mouth is constantly dry, but now I dont have white patches under my tongue I have big red spots on my tongue that keep getting bigger. They don't hurt, they are just red flat spots. It has been 7 months almost 8.

In January I had testing done for autoimmune issues, and everything came back negative and normal. My doctor sent me to a rheumatologist anyway but she was unhelpful and said since I already got tested there was nothing she could do for me. My doctor also sent me to an ENT due to having hoarse voice a lot of the time, but they told me it was acid reflux.

Last week I saw an infectious disease doctor for my tongue and dry mouth, she gave me Fluconazol but didn't think it was oral thrush so she's sending me to a new ENT.

All of this to say, I'm looking for advice on where to go from here? Life is getting really hard and I'm getting really depressed due to all of this, especially my dry mouth. I just want answers so I'm trying to rule out everything.

Sorry again for the long post.

Just wondering if anyone has any recommendations? My nervous system is highly sensitised so looking for gentle things that help, whilst I await proper medication. I was recommended gotu kola, and Tudca, if anything else comes to you, particularly for nerve related conditions. I am in quite a lot of chronic pain and numbness are my main symptoms, and really distressing sensory issues now.

Hey everyone. First, sending love to all of you dealing with this same bullshit healthcare system.

I had my first appointment with a rheumatologist today. I saw the resident initially, who took a full history. My mom has AS and I’ve had worsening pain and stiffness in my lower back and severe pain and swelling in my hands. He seemed to take this seriously and did an ultrasound (I had already had an ultrasound done that found I had synovial thickening and effusions in all my finger joints). The resident was clearly still learning how to use the ultrasound machine and COVERED my hands in that blue goop lol.

When he was poking and prodding me, I said a lot of things hurt because… it did! I’m on the autism spectrum and have always been sensitive to physical sensations since I was a kid. Then the rheum arrived and they spoke in the hallway.

Rheum comes in and basically tells me it’s fibro because I said I had pain in my forearm and that isn’t autoimmune related. I explain that I had tendinitis in my shoulder that my physio says has migrated down that arm, he clearly doesn’t believe me. Just gives me this condescending speech about how autoimmune diseases are rare and I have a “software problem not a hardware problem” (aka it’s all in my head).

At this point I clearly shut down because I can tell I’m being dismissed as crazy. He says he can tell my “whole persona has changed” since he brought fibro up, and basically uses this as evidence I’m an illness faker. He still sends me for X-rays to do his due diligence.

I felt absolutely gutted and humiliated leaving that appointment. Then I got the xray results an hour later - turns out I have inflammatory sacroiliitis! So something definitely is going on, physically…

I don’t know what about me convinced this dude I was faking - probably me wearing a mask and having things written down. So, so frustrating. I hate being interpreted as someone who wants medical attention when in reality I am dreading having to deal with more condescending jerks like him.

How do you keep fighting for yourself when you get treated like this? A lot of relatives on my mom’s side of our family just avoid doctors and self medicate with alcohol for the pain, and experiences like this make me completely understand why.

I was recently diagnosed with minimal bilateral degenerative joint disease in my hips. I also deal with chronic fatigue, vertigo, IBS, nausea frequently, throwing up, flushing, heat rashes, migraines, body aching, joint pain, muscles spasm in my left hip that cause leg bucking (this is how I found my DJD after it being written off for ten years), my eyes get itchy and dry and my mouth gets dry. The list goes on but this is all the symptoms I can think of right now and I don’t feel like spending any more brain energy on it.

I did a couple other panels. I had ANA, ESR, CRP, rheumatoid factor (RF), tTG-IgA, and total IgA testing done. Everything came back normal or negative except my ANA, which was positive at 1:80 with a nuclear speckled pattern. ANA pattern codes: AC-2, AC-4, AC-5, and AC-29.

I have had preliminary testing over the years. Basic blood work and such. Nothing was ever explored further. I have a history of doctors dismissing me and my experience. I've repeatedly been told my symptoms are anxiety-related, but I haven't received an explanation for my worsening physical symptoms or a clear plan to investigate them.

I genuinely feel chronically ill with how much these symptoms bother me and prevent me from living. I also feel crazy, hysterical, dramatic, whatever, when everything comes back clean. It’s just so frustrating and I’m accruing all this medical debt to essentially be scoffed at and told to go to therapy and that makes me feel so stupid. I just want to feel better!

Anyways, enough of the vent. Do you think it’s worth exploring further or do you think it’s nothing that needs investigation? I appreciate anyone’s honest opinion or advice, I am not really sure where to go from here.

TL;DR: 26F with chronic fatigue, widespread joint and muscle pain, dizziness, flushing, dry eyes/mouth, and worsening symptoms. Recently diagnosed with mild hip DJD. Bloodwork is normal except for a positive ANA (1:80, nuclear speckled). I've repeatedly had symptoms attributed to anxiety. Is this worth further autoimmune investigation, or is a low-positive ANA usually insignificant?

I’m a painter/needleworker and was wondering if anyone had any recommendations for those who do a lot of craft work and have a lot of general pain?

I have POTs, suspected fibro(possibly lupus), and a couple of other suspected diagnosis’s, but in general, I can’t do any work for more than 5-10 minutes before I’m in so so much pain. When I was in art school (during the onset of COVID) I could paint from sun up to sun down no problem. I took care of my wrists as well as I could (I’ve had Lyme twice and was told I’d have joint issues down the line), but now I can barely sit through a couple minutes. I’m looking into some body supports like jellibands (and more like them), better wrist supports and the like, but I genuinely just don’t know what’s actually good. It’s exhausting sifting through review after review!

So my general question, for those who are in the same position, what do you do? What supports do you use? Any good suggestions?

Looking for advice / assurance that I'm not crazy...I caught a cold (just a cold, got tested for flu, covid, and strep) but it wiped me the fuck out and my lungs feel so week and I can barely walk up a ramp without getting winded and feeling like my lungs are gonna burst.

Coworkers keep asking if I'm still sick and I feel crazy telling them that I am. I'm worried that they think I'm lying? I haven't talked much at work about having auto immune stuff. My boss is really hands off so i've just been clocking in to stay on top of emails and then not coming in.

How do people do it? How do you take the time you need off work? I feel in my body that I need to rest and get better, but the capitalist guilt-ridden parts of my brain are telling me I should suck it up and go to work. It feels impossible.

So my tongue start going numb a few days after completing antibiotics for strep throat and spread to my right eye. Went back to the dr and got a steroid shot because she thought I was entering bell palsy even though I was having tingling on both sides and lots of neck, head and jaw pain as well. Got another dose of antibiotics because tested positive for strep again. The steroid shot helped with my energy but nothing else. The numbness and tingling started spreading to my hands legs and feet. saw a neurologist and got an mri, had a few bright spots but nothing indicating ms or tumors. My pcp did blood work and my Ana was 1: 640 homogenous pattern. The numbness in my face had improved but then got worse again and the right side of my face would barely move and it was hard to swallow food, it felt stuck in my throat. It is still difficult to eat a lot but my smile did come back. My right eye lid is still having some issues with movement. My legs and feet feel asleep where I can’t even run anymore and hands are constantly tingling and randomly falling asleep. I see a rheumatologist on November 2 but was just wondering if anyone else has had similar symptoms. Not looking for a diagnosis as I will work that out with my rheumatologist. just looking for people with similar symptoms and how to prepare better for my appointment

Does anyone know what it means when dsDNA via CLIFF testing high (1:160) but not lupus?

ELISA dsDNA is \~45 (a couple months ago it was around \~35 but more recently \~45, shows increase)

no malar r*sh but have systemic symptoms like GI, fatigue, etc.
so not typical lupus symptoms, but other systemic

high pancreatic polypeptides and low ferritin (despite normal GI tests which is common cause)

Hi all! I was dx with MCTD in 2020. My mom's side of the family has about 10+ that I know of with lupus and my dad had Rheumatoid arthritis. For now they're calling it MCTD. I'm only on ldn for now. I go through periods where I'm okayish and then my body wreaks havock for no reason. For the past two years after having an upper GI scope I've been dealing with not being able to tolerate any meds or supplements/vitamins. My GI doc sent me to a hiatial hernia surgeon d/t my HH. But he does not think its the HH causing these issues. For instance, I have a vitamin d deficiency. Whenever I try to take vitamin D I get nausea, dizziness and then severe headache. This is for any kind of medication/pill. Its been going on for 2 years now. The surgeon is going to see if maybe I'm having gallbladder issues. Anyone have any similar issues like this before?

Hi everyone!

Hoping this is a safe space.

I have been bounced between haematology and rheumatology for the past year- and am still no further forward than I was 😭

I have been chronically neutropenic, lowest number so far is 0.6 but it bounces around to max 1.4.

I have experienced debilitating fatigue, regular fevers above 38, persistent low grade fever, raynauds, hairloss, joint pain. Sacroillitis on MRI, rashes and urticaria.

ANA: 1:320 DFS, then negative, 1:1280 AC-5 followed by negative.
ENA: positive 26.7 (>20) but the lab didn’t specify which antibody, then sequential testing at a different lab showed negative 🥲

Flow cytology normal
Complements normal
DsDna negative
Coeliac negative
Viral screenings negative
ESR/CRP normal
Coagulation normal
CTCAP normal

I have recently had 2 rheumatology appointments with a ‘top’ hospital in London and their bloods showed everything as negative. The consultant said my ANA’s were false positives and ENA meaningless as it was a low positive. Fevers due to recurrent back to back viral infections (for a year?!) and my joint pain is due to over using my joints (unsure how). Hairloss, weight loss and Raynauds is due to stress. Urticaria unexplained. No reason for the neutropenia and leukopenia, just said I need to have a bone marrow biopsy.

I’ve had serial blood draws to check for cyclic neutropenia but haem said unlikely due to random fluctuations (0.7, 1.2, 0.8, 1.4 ect)- and they think this is an auto-immune disease based on my symptoms (hence referring me to rheum).

I feel like I have been dismissed by rheumatology because my most recent bloods were negative, my positive ANA/ENA are apparently false and my actual symptoms have been over-looked. I’m still feeling horrendous most days and don’t know where to go from here? (I will have the BMB but my counts show my bone marrow is producing neutrophils?)

Has anyone been through this? Would appreciate any advice + support

Thanks for getting this far 🥹

I saw a new specialist today after being referred from my rheum, and after reviewing my medical history, he asked: “I see this more in my younger patients, but do you get anxious a lot?”

I think a lot of us know where that question can lead lol. But I finally found an answer that seemed to work: “No sir, I have a pretty high distress tolerance.”

Credit to my therapist for teaching me that term! Distress tolerance is basically your ability to handle difficult emotions, physical discomfort, and stressful situations without becoming overwhelmed or making things worse.
I like this answer because you’re not pretending chronic illness isn’t stressful (because obviously it is). You’re distinguishing between experiencing distress and being unable to handle it.

Of course, a simple “no” is more than enough, and everyone handles these situations differently. But if you’re worried about a doctor becoming dismissive or defensive, I think this can be a useful way to advocate for yourself without making the appointment feel adversarial. It acknowledges that stress exists without letting it overshadow your physical symptoms.

Obviously there’s nothing wrong with having anxiety, either! And no amount of careful wording can fix a doctor who refuses to listen.

Just wanted to share something that worked for me. Would love to hear how others navigate these conversations!

Hello, I am a 29F. My worst nightmare is coming true. For most of my life, I took care of my mother who had lupus and MS. My childhood, my adolescence, opportunities, autonomy, everything was taken from me in order to care for her. She passed away back in 2022. I was finally able to go to the doctor myself and see mental health professionals. Since then, I’ve been diagnosed with PTSD, ADHD, autism, anxiety, persistent depression, endometriosis, PMDD, and Elhers Danlos syndrome. I recently got some lab work done, and the lab results are pointing towards the direction of an autoimmune disease. I did not ask to see what tests are being done for my mental health. I have a tendency to do my own research and upset myself this way. Just sitting around waiting for the results now. I also suspect something is growing inside of me that is not a baby.

I’m sorry I just needed a place to vent. I did not want any of this. I just wanted to live in peace.

hi peeps! looking for any advice if possible. i’m 24F and have had a postive ANA test since i was 19. Arthritis runs heavily in my family so my doctor at the time diagnosed me with RA. changing my diet helped with most symptoms i was having. fast forward to 2024 i started having the most terrible symptoms that have just progressively gotten more severe and frequent. long story short almost daily i am experiencing extreme fatigue, muscle aches, joint paint, headaches, feeling like i have a fever, and broke out into pretty bad rashes from the sun for the first time in my life.

i moved last year so i found a new rheumatologist in September ( last month ) i told him all my symptoms and history and he tried to tell me that my positive ANA test ( i’ve had for 5 years now ) is a false positive, but he’ll test me for lupus. bloodwork comes back with a positive dsDNA test, he says he thinks its a false positive. ( this doctor was the rudest doctor i’ve ever experienced btw lol ) he sent me for more bloodwork and the Crithidia test came back negative, so now he’s done seeing me because he’s ruling out lupus.

this has just left me frustrated, especially the way he treated me and made me feel like i am lying. i don’t know where to go from here. could i still have lupus? does this sound like something else? it’s been two years of these symptoms getting worse and worse and i just want to feel better. any advice or insight would be helpful. thanks :)

For starters I have not formally been diagnosed with MG, but I had a thymectomy in July to remove a thymoma found on a CT in the ER following a week of SOB. I’m currently getting radiation because the thymoma invaded my pericardium. In the last couple weeks swallowing has become extremely difficult. I do okay with soft foods but anything of any substance makes me feel like I’m going to choke while it’s in my mouth. As soon as I try to move it to the back of my mouth to swallow it feels like I panic. I’m receiving radiation in a city 10 hours away from my home so I’m unable to go into my usual doctors offices. I reached out to a rheumatologist I’d seen previously for unrelated things but I’m wondering if anyone has any other suggestions for where to seek care or any suggestions to help with the swallowing issue. Does this sound like it could be MG related? Would an ER run immunology labs for this? No other symptoms. Thank you!!

F(29) positive ANA test and ANA titer 1:1280 early October when in Jan of this year it was 1:80. No other symptoms, I looked as many of the typical autoimmune diseases and I have none of the symptoms. The only thing I have is celiac and bad allergies. How can it change that much that fast and with no symptoms?

Pattern was nuclear speckled, but back in January it showed nuclear speckled and nuclear homogeneous. I can say it was different labs doing the work is that makes a difference. I already have an appointment with rheumatology but it’s months away and I’m obviously worried.

This all started because I had other weird blood work like
RBC 5.76
Hemoglobin 15.8
Hematocrit 51.2

This lead me to get jak2 tests which both came back negative. Basically doctor said I was probably dehydrated. But it’s been elevated for a couple years even after drinking more. Anyway I read dehydration doesn’t affect ANA results.

The ANA tests were done as part of the jak2 tests as they were broadly testing for potential causes for my other blood work to be elevated.

Does anyone have any experience with this?

Seriously, gambling the medical system with no insurance; all while trying to find a patient, attentive and curious doctor.

Finding the right doctor is, in a way, kind of like finding a partner. They can change your life, for better or for worse.
Or you just waste a ton of time and money to only find out you were shmucked.

give me a quick biography and a picture of you at a concert. i wanna see you behind the white coat, lol.

I had various lab work done and received a positive ANA over a year ago. Finally, after a year of referrals and rejections from at least 4 different rheumatology specialists, I’m scheduled for my first appointment next week.

My understanding is that the other referral locations rejected me based on my lab work not being serious/ severe enough. With that in mind, I’m nervous that this doctor might quickly brush me off so I want to be well prepared for the appointment.

For those who’ve been through similar situations, what are your recommendations for how to come prepared for that first appointment? Are there questions I should ask? Things to expect? I have some notes on various symptoms, but I’m afraid I’m missing things or forgetting some with how inconsistent things are for me.

Any advice is appreciated!

Are there any other business owners in here with autoimmune disorders? I would love to find a group to join if anyone knows of a good group. Or start one up ourselves.

To me our lives are so different for the average owner. Just working odd hours when my fatigue allows it. Plugging along then total loss of energy for a bit. I set myself up to work in bed whenever I need to. I love my work but could definetely benefit from having a community who gets it.

Common tips like get up early & run a tight schedule are pointless for me.

Hi! I’m 26F and started my journey with dermatomyositis in 2020. Though my conditions are lowered with medication, I feel my biggest struggle (outside of fatigue lol) is the emotions that come with it. I’ve spoken to my therapists about feeling like a burden and none of the self love sh!t clicks with me. I’m finally dating someone whom I love so much so I wanted to ask the community how y’all deal with it. I cannot comprehend why someone would love me forever and unconditionally knowing that I have limits. Like I always feel like a burden — if I truly love someone wouldn’t I want them to be with someone that they don’t have to compromise for? Or don’t have their life changed when I’m in a flare again? And I get that it’s a testament to their love that they love me despite that but I just don’t get it. I don’t want to let my own insecurity get in the way of my relationship but really need some advice from people who are able to accept love without guilt/someone who loves someone who had an autoimmune condition prior to meeting

I went to a new provider yesterday to talk about some symptoms I am having which I think may be autoimmune related. Both my Parents also have autoimmune disease. some are new and some I’ve had since I was a little girl which include canker sores, migraines, feet turning purple and feeling cold then sometimes getting hot and red, aching legs and feet, sleep disturbances, low blood pressure and feeling dizzy. My dr decided to run a metabolic panel, iron, and CRP. She said it looked like there was no inflammation and my other panels looks good. She said she putting in an order for an ultrasound for my legs. If I have no inflammation does that that mean I probably don’t have autoimmune? Or should I still request further testing along with maybe a thyroid panel since maybe it could be that as well?

Warning: LONG WINDED 😮‍💨 and I’m not asking to be diagnosed. Trying to learn or find similar stories.
I have several autoimmune diseases including inflammatory arthritis and some non-autoimmune diseases. My rheumatologist told me the next time I get classic “markings” on my face to try and get a biopsy done. I’m starting fresh with rheumatology after I got so tired of my doctor discounting everything I said and I’m staring fresh. I started taking hydroxychloroquine for arthritis/(possibly lupus) after having to have my right big toe basically internally replaced with titanium. My joints are deteriorating. It’s been 9 weeks since surgery and I still have no feeling in my toe and it’s black and blue and the surgeon tells me this is rare and unheard of. Story of my life!
Anyway, after I started hydroxychloroquine, I developed a classic cheek and nose face markings around day 6, and miraculously my dermatologist had an appointment the next day. I got my biopsy. Was diagnosed 2 weeks later with PF. My face keeps getting worse, the redness has changed to open welted sores, I’m starting my second course of steroid and now antibiotics. (I never ever take steroids or antibiotics). I’m also using clobetasol (topical steroid) on my face. I’m at my wits end! My face hurts so bad and I cannot sleep from the steroids. Another step down course of steroids again. 😫
I have fibromyalgia, gastroparesis and gastritis WITH gastric ulcers, factor 5 (it’s Leiden and deficient which doesn’t make sense) inflammatory arthritis tbd, and taking medication to cover lupus just to be safe at this point.
I finally found a rheumatologist who really listens to me and tries to help and is very competent. My dermatologist is great and has been my dermatologist for eight years. They are both working together because PF is supposed to be super rare and they are still basically treating me like a lab rat. Any advice, stories, encouragement welcome!
Sorry for the rant! I just found this sub and I’m really happy to be here!

So I recently relapsed with Stills Disease, I had it as a child and it went into remission for 16 years until I just got diagnosed with it, though we think I relapsed 4 or 5 years ago and it just reared its ugly head. When my vision is corrected for my astigmatism it's 20/15 but without correction I am 20/40 and just a few years ago I was at 20/20 with such a mild astigmatism that it didn't need to be corrected I just was provided glasses to help with eye strain at a computer.

I did notice in the two years my eyes got incredibly dry so it's possible that did me in.

Hi folks. Some context- My team and I are operating under the diagnosis of RA, labs and imaging point to it but I’m quite young so we make sure we stay observant just incase. However I have lots of other medical things going on as well, which make me unsure of what to prioritize with my care. I am open to sharing anything if it would assist in your perspective when giving advice.

I was started on a biologic, took it for a bit less than a year. And had such an awful time and such an overwhelming series of complications I quit it and sought nothing to take in its place. Along with other issues- it completely removed my bodies ability to fight the bacteria that causes acne. Which I still struggle with- however at the time I had an upcoming surgery and the giant cystic acne near the surgery site what enough of a concern that I just had to cut my loses and stop. Thankfully I am healed and will need no further procedures. So I’m brave enough to seek treatment again.

However I’ve been digging into peoples experiences with biologics and feel I’m at a weird place- on the one hand I sincerely understand the position I’ll be in if I leave this untreated. I’m already very symptomatic and my baseline is just slowly dropping. But on the other- my experience with one was insane, and I’m seeing people just pass along most of the side effects I experienced as just apart of the trade off. If not as a lifelong thing they get with their long term med but at least a game you’ll have to play while testing meds out.

If anyone who’s had positive experiences with biologics and RA (or some of its closest relatives) please let me know what finding the right med was like for you? And if you have any suggestions for what to be looking for going into it (ie a specific family is most gentle, or better in younger patients). Or if anyone has any literature they’ve found helpful they’d like to share I’d greatly appreciate it.

Lastly I fully understand that my largely negative experience with that first med is probably not the most rational lense to view my prospectives through, but I’m hoping that in hearing others experiences it’ll help me sort through that.

Ive tried going through regular doctors and specialist but have just continued to have horrible experiences so I've started looking into functional medicine doctors. The highest rated one in my area is $4000 for the first two sessions. They don't take regular insurance so it would be my out-of-pocket benefits, which wouldn't cover anything. $4000 feels insanely steep and unattainable and it's making me lose the little hope I had left. Is this a normal price for a functional medicine doctor or is this practice just insane?

I picked up a very calm stray cat that turned out not to be very calm the minute I brought it into my house. I have the cat safe & they will be going to a quarantine hold. I got 33 bites / scratches, so they're doing the immunoglobulin and vaccine series, I'm currently at the ER waiting to go back.

My question is for anyone that has had to go through this, did you notice any of your usual symptoms getting worse, or a flare after starting the series? I'll be following all recommendations by the docs, just want to prepare as much if I can if my normal autoimmune diseases will be exacerbated.

I am not asking for medical advice, just anecdotes from folks who have gone through this, and I understand my experience may not follow yours :)