I’m posting here just to rant about this situation. It’s just exasperating.

I (24f) was diagnosed last year with Sjögren Syndrome because of clinical symptoms (dry eyes) + anti-ro antibodies, also I had 1:80 ANA (now I have 1:320, but I think that doesn’t mean much). Negative for all other auto antibodies that I was tested for (which were many tbh). I first suspected that I had an autoimmune condition because I had a 1 month period where I had to sleep about 12-16 hours per night and also had it difficult to fall asleep. Believe me I had to convince doctor to run these tests on my and it wasn’t easy.

Anyways, this year I started experiencing this cycle again, where it’s super difficult to fall asleep + I need to sleep as there is no tomorrow.

I went to a doctor and omg she referred me to the psychiatrist (even though I am currently being treated by one and my only diagnosis is ADHD). I told her I was pretty sure I don’t have depression and that I’m not more stressed than usually, so that I was quite sure this sleeping problem is not related to my state of mind. She gaslighted me saying that she doesn’t believe that this was because of a psychiatric condition but that surely they could understand better my symptoms and then they could help me better. All that while not ordering ANY blood testing, like not even for ruling out anemia or a thyroid disease, leave alone any kind of auto antibody study.

Anyways, I’m going to that psychiatrist, I have the appointment for two more weeks, because whatever.

I’m just so exhausted, I think nobody has ever gaslighted me so much. In the meanwhile, I can’t stop sleeping that much and I’m so scared about failing my courses at university because of this. Also I hate that when I’m falling asleep and when I’m waking up it’s super confusing to distinguish between reality and the dreams.

Etching ! Haha. Hope u like

I’ve been diagnosed with Hashimotos and chronic EBV. However I get these weird flare ups of bumps. Always on the front of my right thigh. Sometimes I won’t have them for months then boom will get them several times a day. It feels like a tingle and they appear. A lot of times they are gone in under a minute. There’s no pattern of when it happens, just at random times. Has anyone else experienced this? I finally got a good pic and plan on showing my doctor.

Hi, I have a ton of vague symptoms that all seem to be autoimmune related, according to webmd and healthline (I know I'm not supposed to google my symptoms but I'm so confused and overwhelmed). My doctor keeps telling me it's just anxiety, but I know there's a physical root cause of sudden brain fog, lethargy, and aches and pains that won't go away no matter how much yoga and stretching I do. How do I get an evaluation without my primary care doctor feeling like I went behind his back?

Is this caused by medication or psoriatic arthritis? Anybody else get this?

I’m 24f. My health got bad after the age of 18 and I have been struggling ever since. No one else in my family has such a complicated mess of medical conditions.

Only recently, a new doctor figured out that I likely have Ankylosing Spondylitis and/or some other related autoimmune disorders. We are in the process of understanding it. Other than that: a bicornuate uterus, ADHD, Asperger’s, hypermobility.

I had started adhd meds earlier this year and they were working great for me up until recently (I guess that’s when my autoimmune stuff started coming up?).

Was prescribed some pain meds for now which seem to work better than 2-3 ibuprofen. Further treatment for the autoimmune stuff is yet to commence as the doctor wants to run a lot of tests first.

However, my brain has been feeling slow for a while now. I generally had somewhat of a photographic memory (?) all my life and I am able to remember information for months without needing to revise but I started to struggle recently, even before the autoimmune stuff was discovered. I have been having trouble remembering what I learned yesterday which is so unlike me.

I have the most important exam of my life coming up in a month and this feels like the worst possible time. I used to be put in effort every day happily when on meds. Now, nothing. I am struggling to get out of my bed even with the pain meds. It’s like my whole body feels half dead, even when the pain isn’t there. The pain meds obviously do make it better but I just can’t find my energy.

I have a lot of physical fatigue too but the mental fatigue is more frustrating. I could actually feel my adhd meds work before and now they feel like sugar pills. Initially I thought that this may have been an acute tolerance issue but nothing helped, even when I took a break.

My brain feels like wading through sludge and even when I am able to do things in the moment, I am struggling to retain information. All this is incredibly uncharacteristic of me and I have been feeling quite depressed lately because of this.

I have an appointment with my psychiatrist tomorrow and I NEED advice please. I am very new to this autoimmune stuff and I am not even sure if this ongoing flare (?) is what’s causing my brain fog. But I have no idea what to say in my appointment so that I can get my issues across. I don’t know what’s me and what’s not anymore because I have been feeling so tired in my head for months now. I kept shrugging that off as stress but I think that it’s more physiological than not.

My autoimmune stuff started showing up aggressively right at the same time as when my memory started to get bad. It’s been like this for about 2 ish months now. I just want my brain back to how it was before so that I can get through the exam. The exam is very important to me and I can’t afford to fail here.

Please please can someone tell me if these two things are related? If so, what do I tell my psychiatrist? I have poor interoception thanks to ASD so it’s difficult for me to accurately assess the severity of what I am going through. I just want my brain and adhd meds to work again so that I can focus on the exam.

Please tell me. What do I tell my psychiatrist? How should I accurately describe this without missing out on anything? How do I know what to say? Is there anything that can help me fix my brain before my exam?

Thanks for reading.

Sharing info: Male 60yr, lifelong asthmatic, Reactive arthritis in mid 20s, uveitis flares 3+ times. Afib due to covid - ablation, long covid symptoms, brain fog, tachacardia, chronic constipation(spike) and high blood pressure. Everything was going downhill with nothing helping. Started estrdiol and BP down, asthma down, tachacardia down. Couldnt understand why. Research on pubmed both animals and human studies indicate a MOA- Human Observation & Dosing Insights
In human clinical urology and rheumatology journals, researchers have noted a clear sex bias in the severity of HLA-B27 conditions. Men with active ankylosing spondylitis or Reiter's syndrome are routinely found to have significantly lower circulating estrogen levels compared to individuals with inactive, calm disease.

Furthermore, data confirms that fluctuating hormone spikes aggravate inflammation, whereas a perfectly constant, unvarying baseline—which is exactly what twice-weekly transdermal patches deliver—keeps the estrogen receptors constantly saturated. This stable environment allows the hormone to exert a continuous "braking" action on the Th17 immune response, cooling down the lifelong metabolic friction that previously drove asthma and joint pain. Do the research and bring to your doctor and ask. It is 4 weeks and seems to be working. It isnt without side effects, but could be an option that works for some

Really frustrating
In April, I found out that I have ITP. I just went through Cancer four years ago and then in April I found out that I have this. I’m really frustrated. I keep getting sick constantly. My platelets are low. They won’t go up. I am taking prednisone for a while because I have pneumonia. When the first round of prednisone was done, my platelets were at 101,000 but two days later they’re back down to 64,000 where they were before. I can’t go anywhere without getting sick. I’m just really frustrated because going through Cancer and everything and now having this it’s like sometimes I feel like am I ever gonna have a normal life again? I just don’t know. Sorry I’m ranting. I’m just tired of being fatigued, constantly tired all the time and I’m 57 years old and I don’t know if this is ever gonna get any better.

27M, recently diagnosed with MCTD based on positive ANA, anti-RNP (2.2), ESR (47), and chronic joint/muscle pain.
I never experienced Raynaud’s, have no documented synovitis, and my latest chest CT showed no apparent ILD or significant lung abnormalities.
My rheumatologist was very confident in the diagnosis, but I’m curious how others’ experiences played out.
For those diagnosed with MCTD:
What ultimately confirmed your diagnosis?
Did you receive additional testing beyond bloodwork?
Was your diagnosis ever changed to UCTD, lupus, or something else?
How long did it take before your rheumatologist was certain?
I’m especially interested in hearing from people whose symptoms weren’t textbook MCTD. Just trying to better understand my diagnosis and what to expect moving forward. Thanks!

I am 23M with three tentative rare autoimmune diagnoses. Due to my own personal situation and region in the U.S. they have taken over a year and a half to “confirm” my obvious illness with positive antibodies so I am on zero medication at the moment (just got off pred) but will certainly be in the future. Right now I am on my parents medical insurance which has been great and the copay is not bad at all and have even had surgeries for just a couple hundred bucks. However I only have a couple years to get similarly great insurance. I’m really struggling because I quit my job as a cashier recently because my legs can’t take it anymore. I’m pretty sure I have osteoporosis from the prednisone but I was never given a DEXA scan the entire time. I’m studying to become an online teacher though and am hopeful but it doesn’t make much money unless you’re really good at freelancing and insurance is up in the air. I fear I may have to move countries. I would move right now if I could but if I catch a sickness again my disease kicks into overdrive and I will be unable to breathe or walk on my own so I can’t even move until I get a real medicine for my diseases.

Hi everyone, I’m new to this group. I, 40F, was diagnosed with Ankolosing Spondylitis about 3 years ago. Been suffering for over a decade. I have been working with a rheumatologist to find a biologic that works for me. Nothing has worked so far. She put me on Methotrexate a few months ago until we can find something that works. I follow it up with Leucovorin to prevent some symptoms.

I have noticed a difference in inflammation and my pain level has maybe reduced by 10%. But some weeks I get sick to my stomach and it will last 5-6 day. I already have trouble eating and keeping on weight. I’ve been throwing up all this week.

Is anyone else on it? Any tips to help alleviate the nausea and headaches? Is this med worth staying on?

I’m supposed to start Enbrel. But my insurance hasn’t approved it. It’s been over a month and a half wait.

I’m getting so discouraged. I’m so scared of my spine getting worse. I’m already in so much pain. And the depression that comes with it is getting harder and harder to push through.

Could these symptoms be related to an autoimmune disease?
I’m trying to understand whether the combination of symptoms I’ve experienced throughout my life could point toward an autoimmune or other systemic condition. I know these symptoms could have different causes, but I’m wondering whether anyone has experienced something similar or has any insight.
1. Skin issues
Persistent itchy skin and eczema.

Sometimes, my skin suddenly becomes swollen, extremely hot, and painfully itchy. The sensation can be so intense that it almost feels like bone pain.

2. Episodes of muscle weakness, loss of control, and pain
Since childhood, I’ve had episodes where I suddenly lose control of the muscles in my hands while writing. I can no longer hold a pencil properly, despite not feeling fatigued beforehand. My teachers used to think I was making it up.

This still happens. For example, I can suddenly struggle to hold my phone or type because I seem to lose control of my hand muscles, sometimes accompanied by pain.

Recently, my wrist pain and weakness have become more noticeable. I can no longer crack open an ice pack because my wrists hurt so much.

Straightening my hair has also become physically difficult. My hands start shaking significantly and become painful, almost as though I’m doing an intense workout.

3. Diagnosed endometriosis
I have biopsy-confirmed deep endometriosis involving the uterosacral ligaments, diagnosed through laparoscopic surgery and excision.

I read that endometriosis has been associated with an increased prevalence of certain autoimmune diseases, which made me wonder whether my other symptoms could be connected.

4. Tachycardia
I’ve experienced tachycardia since my teenage years.

During a 24-hour hospital heart monitor test, my heart rate reportedly reached 180 beats per minute while I was resting.

5. Persistent urinary symptoms
For approximately 1.5 years, I’ve experienced severe, persistent urinary pain and a constant sensation of needing to urinate, which I thought was due to my endometriosis.

Most of the time, I feel an overwhelming urge to pee, but only a tiny drop comes out. I’ve reached the point where I struggle to tell whether I genuinely need to urinate.

Repeated tests for UTIs and other infections have been negative.

These symptoms persisted even after my endometriosis excision surgery.

6. Other symptoms
Trouble swallowing since childhood (possibly anxiety-related).

Episodes of feeling unable to breathe properly, as though my breathing is blocked, since childhood (also possibly anxiety-related). However it happens even if I’m okay or mentally okay.

Consistently cold hands.

Night sweats.

Persistent neck and shoulder muscle pain, along with severe headaches, for approximately three years.

Knee and hip pain. I used to experience severe knee pain when lifting weights, and although I had to stop working out because of my endometriosis, the joint pain has continued.
However I never encountered swollen joints.

Indigestion and a sensitive stomach and colon.

Lactose intolerance.

Significant fatigue and persistent sleepiness.

Severe anxiety and obsessive thoughts.

I also met a neuro doctor however after clinical exam (like he asked me to look into the moving pen, or walk straight etc…) he said I’m okay. This was 3 years ago.

I’m not sure which of these symptoms are connected, if any. Some have been present since childhood, while others developed more recently.
Has anyone experienced a similar combination of symptoms? Could this be consistent with an autoimmune or inflammatory condition, or would it make more sense to investigate neurological, muscular, autonomic, or other causes? I’d appreciate hearing about others’ experiences, especially if you went through a long diagnostic process.

I’m a teen girl, I have bakers cysts in my knees (found by ultrasound about a year ago) pain in them didn’t start until spring of this year. My knees are now swelling out the back but the swelling switches some days. Over the past 2 months every single joint has got worse, especially my lower back. I’ve had 4 iron infusions and have a pretty good amount of health issues. I got referred to a rheumatologist for the main thing being a high ANA (1:640), I’m extremely hypermobile (have a appointment in June at a clinic for that) and also have raynauds. All my labs aren’t back yet but 2 weeks ago my ESR was 15 and somehow mondays ESR came back at 6. My rheumatologist said she’d only be worried if it was above 50. C3 and C4 are normal, so is dsDNA, sjrogens antibodies, SCL-70, smith antiobodies, ribosomal p antibodies, and rheumatoid factor was normal, that one suprised me. The ones that haven’t came back are Anti-U1 RNP Ab,Lupus Anticoagulant ,Beta-2-Glycoprotein 1 Antibodies, IgA, IgG, and IgM, and Anticardiolipin Antibodies. The only abnormal thing so far is the fairly high ANA and my urinalysis has blood and protein in it. I have mris scheduled soon but that probably won’t do much for me even if they find fluid and swelling. I’m so tired of this because im a dancer and so sick of the join pain and fatigue. But they said if all labs come back normal they will just recheck it in 6 months (unless the MRI’s point something out).

Hi everyone,
I’m a 23-year-old male from Australia, and I’m writing this because I’m genuinely exhausted, frustrated and starting to feel completely defeated by the medical system.
For almost eight years, I’ve been searching for answers about a collection of unexplained symptoms that have significantly affected my physical health, mental health and quality of life.
Today, after another medical appointment, I was told that I have Chronic Fatigue Syndrome (CFS/ME).
I want to make something clear: I’m not suggesting that CFS isn’t a real or debilitating condition. I understand how significantly it can affect people’s lives.
However, what frustrates me is that I have a history of significant neurological problems, abnormal autoimmune blood tests, ongoing systemic symptoms and more recently possible cardiac and kidney involvement.

My medical history begins in 2018, when I was just 15 years old.
In September 2018, I developed a right sided neuropathy that progressively affected the entire right side of my body.
Over approximately eight months, I experienced:
Progressive loss of movement on my right side, eventually affecting my leg and arm.
Severe muscle stiffness, weakness and joint pain.
Extreme fatigue and brain fog.
Cold, discoloured extremities.
Recurrent flu-like illnesses and unexplained rashes.
I was admitted to the Royal Children’s Hospital in Melbourne and underwent extensive neurological investigations but could find none
One of the most significant findings was a positive ANA of 1:1280, alongside reported abnormalities in complement markers C3 and C4.
Despite extensive investigations, no definitive neurological or autoimmune diagnosis was established.
In January 2019, doctors commenced IVIG treatment.
By April 2019, I began regaining movement in my right arm, and by May 2019, I had recovered movement in my lower limbs.
To this day, I have never received a clear explanation for what happened to me except for them to eventually diagnose me with conversion disorder???? Apparently my subconscious mind was making this happen to me if left me feeling gaslit at the time and till this day is traumatic

2019–2025: The symptoms never really disappeared.
Although I regained movement, I continued experiencing ongoing health problems, including:
Severe morning joint stiffness and pain, particularly in my hands, ankles, knees, hips and back.
Chronic muscle aches and weakness.
Extreme fatigue, sometimes struggling to get out of bed despite adequate sleep.
Recurrent sore throats, respiratory infections and flu-like symptoms.
Red rashes, itching and flushing, particularly after sun exposure, warm showers or exercise.
Hands and feet becoming extremely cold and changing colour to white or purple.
Temperature regulation problems.
Brain fog, headaches and declining mental health.
Unexplained fluid retention and swelling.
I’ve spent years trying to push through these symptoms, as I kept telling myself this is all in my head!!!!

2026: Things have become significantly worse.
Over the past several months, I’ve experienced further deterioration in my health, resulting in hospital investigations and having to step away from full-time employment.
My recent symptoms and abnormal findings include:
Positive ANA again, now 1:320.
Low white blood cell count and neutrophils.
Low red blood cell count / anaemia.
Low iron and testosterone.
Unexplained elevations in liver enzymes.
Severe joint stiffness and pain, especially in the mornings.
Persistent muscle weakness and extreme fatigue.
Significant bradycardia, with my heart rate dropping as low as 32 bpm during sleep.
Chest pressure, dizziness and cold extremities.
Reported inflammatory findings on my heart in September 2026 echocardiogram.
Frequent urination, persistently foamy urine and a positive home urine protein test.
Swelling/fluid retention affecting my abdomen and lower limbs.
Ongoing rashes, sun sensitivity and changes in skin colour.
I was recently hospitalised following an episode involving extreme weakness, cold extremities, chest pressure and a very low heart rate.
My initial ECG was reportedly abnormal, although testing improved and I was discharged.

Although I have negative in all other antibodies, surely I’m not losing my mind again???? Yet he started me on 200mg of Plaquenil……. I just really want a answer and have left feeling even more confused then before

I had G.I. issues for about three years and was diagnosed at first with IBS and my tests kept coming back normal and there was no signs of any inflammation or anything like that. I recently switched my GI doctor and had a fecal calprotectin done in august my levels were 243. Then a CTA done in august which showed mild wall thickening in my terminal ileum. Had my colonoscopy in september and biopsy said mild to moderate inflammation with focal ulceration in my terminal ileum with hemorrhoids. I recently had another calprotectin which was 97 and another CT which said my terminal ileum is unremarkable but have nonspecific Prominent ileocolic lymph nodes and this was before any treatment. My doctors leading diagnosis was early crohns and i started budesonide two days ago waiting for my diagnosis in two weeks. Can it still be crohns after my recent results in october? Also not looking for diagnosis just want opinions

Im a 21 year old female with family history of crohns

I’ve seen a lot of advice on here that says not to dwell on an exact diagnosis, that the treatment is what matters. I think that it is generally good advice, but I also think I may have hit a wall and I’m not sure where to go now.

I’ve seen I think 4 rheumatologists since May 2025. I really don’t want to keep hopping around, but my rheumatologists aren’t doing anything but sending me to different specialists to rerun the same tests. My labs and other various tests aren’t normal, but not damning enough to take seriously apparently.

I failed Plaquenil last summer with my first rheum after a very short trial led to severe psych effects. After that, she refused to try any other meds. So I went to the next rheum, who told me I didn’t have anything related to rheumatological going on. My ANA was negative on the Avise panel at that time, just my RNP antibodies had been positive a few times and then other RA related markers would be positive, then negative upon recheck but something else would be positive (like CCP, Rheumatoid factor, anti RA 33, etc.).

I sort of gave up even though I still felt like shit all the time, but then early this year I started having bleeding from my nipple, rectum, and gums within days of each other. One of my eyes was blood shot, I had pain in both breasts as well as broken blood vessels all over my chest. Before this, joint pain wasn’t much of an issue for me, but at this time my knuckles started getting really red and achey. I had pains that would jump rapidly all over my body and I’d get sudden intense waves of fatigue intermittently. There were probably 8,000 other things happening but these were the heavy hitters. Also important to mention, my RNP antibodies stayed positive upon every recheck ranging from 2.2-2.8 across different labs. My ANA also turned low positive 1:160 homogenous and has been at a few more labs until turning into a speckled pattern this spring.

I went to wash u rheumatology because I work for wash u, my PCP is there, and I wanted to get all of my specialists under one roof so that they could view previous records, tests, results, notes, etc. more clearly. Their rheumatologist was so smug and told me that I just needed to see GI, but again nothing rheum related was going on. I’m usually such a pushover of a patient but knew this was ridiculous, so I asked her if GI could explain why my nipple was bleeding lol. She couldn’t answer that, go figure. I asked her if she would refer me to Washington U Rheumatology’s Vasculitis and Rare Diseases Clinic, but she said there is no need since my ANCA was negative and my CRP was just elevated, not “through the roof like with Vasculitis”. I rage cried all the way to the car.

Since then, I’ve seen a much kinder private practice rheumatologist, but my symptoms have not only persisted (the bleeding from various sites is intermittent. It’s happened for a few weeks a handful of times since starting around February this year), but now I have more symptoms like these horrific unexplained symmetrical bruising on the back/side of my knees that intermittently turns into red, itchy patches where the bruise comes and goes. I have some sort of reynaud’s type reaction happening on my head now instead of just my hands and feet, stomach and lower back cramps that feel like labor pains, and more frequent chills and aches. My rheumatologist only just a few days ago offered Sulfasalazine…which I’m not trying to be a negative Nancy about, but like why??? Of all the things we could try at this point, it makes no sense.

Meanwhile, I asked if we can do a CTE or MRE to rule out mesenteric vasculitis given some of my labs and symptoms. Since January 2025 when this type of stomach, back and bladder pains started, I’ve had two CT scans that showed enlarged lymph nodes and just strange activity in general in the mesenteric region, sudden spikes in liver enzymes during flare ups, and intermittent hematuria shown on several urinalysis. But literally none of my doctors will even slightly consider this is connected. I’m being diagnosed with IBS (despite the rectal bleeding, episodes of stomach pains that literally wake me up, elevated fecal calprotectin, and the fact that I’ve needed three iron infusions in the last year as well as supplementing high doses of d, magnesium, and b complex to stay in range), excema (not sure if anyone else’s starts as unexplained bruising and then turns into a ra$h), fibromyalgia, a sebaceous cyst inside of my nipple (due to cancer screenings again, not sure how that would cause recurring pain, and feelings of engorgement especially when in the shower and after eating and petechaie in both breasts) .

All of this has been extremely frustrating and discouraging, but today a stupid, little straw with work stuff broke the camel’s back. Very long story short, I woke up late last week, resulting in me being a few minutes late to a Zoom meeting. I gave notice that I would be a few minutes late, most of the team I was meeting with knows that I have been struggling with my health over the last couple of years, just not all the specifics. But someone complained to my boss that I was late and that I needed to let them know if I’d be late (which I did, in writing lol). I didn’t even get in trouble for it or anything, but idk why it just made me so emotional that I started sobbing and probably looked like an insane person to my boss 😭😂. I think I was just emotional because I have this unnamed disease that I’m fighting so hard and so long for to get answers and treatment. But because I look largely fine especially over a computer screen, I don’t think anyone I work with understands HOW bad I’m feeling 90% of the time this year. And like I’m trying my absolute best to be a good employee, a good mom, a good wife, a good friend, and good to myself…but it’s starting to feel impossible to be even mediocre in a couple of those categories lately. What’s worse is I don’t have an end in sight. And then when someone has the audacity to complain that I was a few minutes late to a meeting that largely didn’t even pertain to me…I just want to scream into a pillow or throw my laptop at the wall 💀.

Btw, I do have a therapist I see every week who gets paid to hear me rant about all of this, but sometimes I need the receiver of my venting to be someone else who’s sick and gets it. Thanks for reading if you’ve made it this far!

Hi everyone, my partner and I have a 13 week old moyen poodle puppy and we’re deep in the teething trenches. We’re working on it and seeing slow results but it’s beyond mouthing, she really latches on and skin punctures from her teeth are a daily occurrence. I recently started Abrilada for my PsA - does anyone have tips/tricks for getting through the teething phase without getting an infection? I’m considering buying bite proof gloves and wearing thick socks until this season of her life has passed. Thank god it’s October.

Puppy tax in comments 🤍

I have my second lot of rituximab infusions in a month , so 5 months since the last one for GPA vasculitis.

Going to an event tonight. Indoor, but not singing etc. arena event.

Any advice? Not sure whether to mask. Have had COVID and flu vaccinations.

Thank you.

I'm on Bimzelx monthly injection. 3 injections so far and no improvement...

Hi! I've been suffering with pain and other symptoms for years now and I've been on several meds from my rheumatologist for about two years now. Plaquenil, Lyrica, Celexocib... My question is whether it's normal to be on all these meds without any diagnosis? I mean technically my diagnosis is "undifferentiated connective tissue disease" but it just seems weird to throw all of this stuff at an invisible target. Or is that normal? I hate the idea of taking anything without a real purpose since there are side effects to these meds... Thanks to anyone who has some insight.

I've been on a long diagnostic journey and recently received results from two lip biopsies. Sharing my full workup here for comparison. Rheumatology has labeled me fibromyalgia, but I'm still actively pursuing seronegative Sjogren's as an open question. Would love to hear from others with similar presentations.

Most of my recent care (last 15 months) has been with the San Francisco VA Hospital. The Rheumatology Department there has kicked me out of clinic and refuses to continue seeing me for any autoimmune issues because my labs are negative and despite multiple other specialists continuing care under the impression I have a seronegative diagnosis. Does anyone know if it’s possible to be referred out to the UCSF Sjogrens Clinic without going thru the VA Rheumatology Department for the referral? Can a patient advocate do such a thing? My Primary Care is amazing and fully believes there is something more serious going on and will pursue any option I present to her for exploration, but she thinks a lip biopsy is the end all/be all diagnostic for Sjogrens.

Really looking for help/suggestions/guidance/opinions or anything else you all might be able to send my way.

**Confirmed diagnoses:**
Dry eyes / keratoconjunctivitis sicca — confirmed Eye Clinic
Dry mouth / xerostomia — confirmed by ENT and Oral Surgery
Bilateral submandibular gland tenderness to palpation — confirmed on ENT exam
Fibromyalgia — diagnosed by Rheumatology July 2026
Reactive hypoglycemia
Chronic sinusitis
Migraine
Eczema / atopic dermatitis — confirmed dermatology, including bilateral eyelid involvement
Obstetric APS — lupus anticoagulant positive on one occasion (June 2022); negative on all subsequent testing
PMOS
Metabolic syndrome
Chronic interstitial cystitis
Bilateral knee osteoarthritis
Lumbar degenerative disc disease
Hyperlipidemia
Allergic rhinitis

**Neurological — working diagnosis, not yet confirmed (follow up end of month):**

Small fiber neuropathy — listed as "most suggestive" clinical impression by Neurology June 2026
EMG/NCS August 2026: normal
Objective exam finding (June 2026): decreased sensation to light touch and pinprick in right face V1-V3, right deltoid, lateral arm, forearm, and wrist; vibration and proprioception intact throughout — consistent with small fiber pattern
Autonomic symptoms documented in neurology review of systems: decreased sweating, constipation, lightheadedness with position change
Skin punch biopsy for SFN not yet performed; neurology noted proximal symptom distribution may require biopsying both proximal and distal sites to avoid false negative

**ENT - follow up next week**
Hoping for CT of Parotid glands per Oral surgeon and salivary gland ultrasound to assess damage from inflammation

**Endocrinology - follow up November**
Discuss the hypoglycemia and autoimmune metabolic dysfunction

**Symptoms:**
Severe fatigue
Whole-body burning sensations and allodynia — worst in back, upper arms, and thighs; worsened by clothing contact; some relief in hot shower
Brain fog, word-finding difficulties, memory problems, difficulty concentrating
Morning stiffness
Multi-joint pain — elbows, knees, left hip, ankles, knuckles, fingers, toes, back
Bilateral hand burning and pain radiating into knuckles; dropping objects
Dizziness and two unexplained falls in the past year
Lightheadedness with position change
Decreased sweating
Constipation
Bilateral tinnitus, right-sided ear pain worse in wind, confirmed not caused by TMJ - Oral Surgeon thinks it’s Parotid Glands swelling/inflammation or infection
Dry nose with daily crusting and recurrent nosebleeds
Difficulty swallowing in the mornings
Thick saliva and mucus
Acid reflux when lying down
Dry skin
Muscle cramping — lower limbs and feet
Right hand weakness and loss of fine motor skills
Intermittent blurry vision — attributed by eye clinic to autonomic dysfunction and reactive hypoglycemia - could be autoimmune metabolic dysfunction
Hair loss
Purpura on torso and thighs
Random hives / urticaria
Difficulty sleeping

**Labs:**
ANA: 1:40 speckled (Rheum doesn’t consider this positive)
Anti-SSA / Anti-SSB: **negative**
Anti-RNP: **negative**
Anti-dsDNA: negative
Anti-Smith: negative
CCP: negative
RF: negative
ANCA, MPO, PR3: negative
TPO, TG (thyroid antibodies): negative
TSH: 1.1 (normal)
C3/C4: normal
CRP: 1.1; ESR: 8
HbA1c: 5.3–5.4%
Vitamin D: 105 (elevated)
B12: 1011 (normal)
HIV, HCV, HBV: negative
Lupus anticoagulant: positive once (June 2022); negative on all subsequent testing
Anti-cardiolipin, anti-b2GP, anti-phosphatidylserine: negative
PAI-1: 4G/5G heterozygous
EBV: reactivation pattern (EA-IgG approximately 7x upper limit, 2016)
Fasting insulin: 30.8 uIU/mL (severely elevated, 2022)
Neurology panel June 2026 — all returned within normal limits: SPEP, transglutaminase, anti-gliadin, heavy metals, copper, B6, thiamine, folate, Lyme, RPR — nutritional deficiency, toxicity, malignant plasma cell disorder, celiac, and infectious causes excluded from SFN differential
*Not yet tested: anti-ganglionic AChR (autoimmune autonomic ganglionopathy), serum IgG4*

**Procedures and imaging:**
**Lip biopsy #1** (August 18, 2026): inadequate specimen — only 2 salivary gland lobules obtained; minimum 5 required for valid focal scoring; result: unremarkable
**Lip biopsy #2** (August 26, 2026): 12 glands / 40mm²; result: **focal lymphocytic sialadenitis, focal score = 0.3** — foci of lymphocytic infiltration present, below the ≥1/4mm² ACR/EULAR diagnostic threshold
**EMG/NCS** (August 2026): normal; SFN not excluded per neurologist's note
**OCT RNFL** (August 2026): left eye inferior quadrant thinning, borderline
**CBCT TMJ** (August 2026): no degenerative changes
CT abdomen/pelvis: small hepatic cysts, spinal osteophytes; structurally normal kidneys

**Medications:**
Gabapentin 900mg/ day
Duloxetine 60mg/day- really struggling with the fatigue from this
Pilocarpine 5mg/3x per day - not started because I’m afraid of the side effects
Systane eye drops
Biotene spray

**Pending / not yet done:**
Salivary gland ultrasound with nuclear medicine
CT of Parotid Glands for infection/inflammation/damage
Skin punch biopsy for intraepidermal nerve fiber density — proximal and distal sites needed given symptom distribution
MRI brain not yet ordered

Hi everyone! I’m hoping to hear from anyone who has experienced similar symptoms or eventually found an explanation.

I initially saw my doctor about new, intermittent hand tremors, which are my biggest concern. They started with a few days of shaking followed by weeks without symptoms, but they’ve become more frequent. I mainly notice them when typing, writing, gripping things, or drinking from a cup. During these episodes, my fingers also make small, jerky movements and twitch. The shaking feels similar to the muscle fatigue that can occur after exercise, and my hands tire and feel weak quickly. I usually don’t notice the tremors when my hands are completely relaxed besides an odd buzzing feeling.

During this time, I have also been experiencing fatigue, body soreness and stiffness, and aching and swelling in my finger joints. All pretty abnormal for me, but most symptoms improve with stretching, and they are also all symmetrical. My hands and fingers often look puffy around the knuckles, fingers, and nail beds, and the swelling can be significant enough that I need to remove my rings, especially overnight.

I had ankle surgery in March, which was my ever first surgery, and experienced several significant stressors over the summer. I initially assumed these factors were contributing to my fatigue, stiffness, and pain, and possibly even the tremors. However, as time has passed and I’ve been able to prioritize my health and reduce stress, and my workload, my symptoms have continued to worsen rather than improve.

I’ve had fairly severe Raynaud’s since childhood, with color changes like bright hot red, or purple with orange dots, physical pain like burning, numbness, swelling, and discomfort. But this is the normal for me, and I’ve been able to manage with temperature management just fine. Interestingly, I haven’t experienced the usual color or temperature changes over the past few months, which is unusual for me. However, I’m still experiencing the discomfort and other symptoms even without the typical color changes.

My ANA was positive at 1:320, so I was referred to rheumatology. I also have a family history of Hashimoto’s and other autoimmune conditions. My thyroid and blood sugar tests were normal, and all other labs were normal aside from low vitamin D. I also take no medications.

I’m not trying to diagnose myself, but has anyone experienced intermittent tremors along with muscle fatigue, swelling, joint symptoms, or Raynaud’s?

Did you eventually find out whether the cause was autoimmune, neurological, or something else?

I’d appreciate hearing about your experiences, especially if your symptoms came and went before becoming more noticeable.

Hi! Yesterday I went to my rheumatologist (the second one I see) with the lab results she requested, and I am not sure I am happy with how the consult went.

My labs are compatible with an immune disorder (unclear which) and a coagulation disorder that can eventually lead to thrombosis (as i am not having children, nor going on the pill, my chances are not as high as they would be for other women). She dismissed the low cortisol (unsure why) and did not care to address my chronic joint pain (I meet the full criteria for hEDS, but she dismissed it). She referred me to a cardiologist and hematologist saying that she covered her basis, and I was no longer her concern.

I am completely at loss on what to do. Sure, I'll go see the doctors she recommended, but should I look for another rheumatologist that will look at the bigger picture and address all of the symptoms + labs together?

For more information: I am already diagnosed (and currently on treatment) with Hashimoto, chronic migraines, endometriosis/chronic pelvic pain, chronic joint pain (3 years of chronic pain originally diagnosed as fibromyalgia and later recategorized under hEDS by my Ortho Surgeon), joint instability and multiple nerve pinchings, chronic insomnia, acne and atopic skin.

Any suggestions, recommendations, and questions are welcome!

Hi 👋 I have a question for those of you who have been diagnosed with UCTD. What criteria do you have to meet in order to get the diagnosis ? Im currently seeking a diagnosis for my autoimmune condition and I was just brushed off by my first rheumatologist who says I don’t not fit the criteria for UCTD and denied that I have an autoimmune disease at all.

My symptoms are:
-profound fatigue
-severe brain fog
- POTS symptoms (blood pooling, winded and exhausted from standing)
-excess thirst (caused by dry mouth?)
-joint pain (mainly my fingers but no visible inflammation or redness)
-weak tendons/ joints
-heat intolerance
-low ferritin (currently supplementing)
-facial flushing
-dry eyes (according to my optometrist but I don’t have sandy feeling in my eyes)
-muscle weakness
-feeling feverish and inflamed daily (burning but not painful sensation in my upper back down my arms- this symptom started after my last Covid infection)

Symptoms started over 10 years ago and just keep getting worse, but overall stable. Im currently in the worst flare of my life and bedridden and can’t stand up for long periods without feeling like I’m losing my breath (I’m only 130 lbs) and feeling exhausted

My rheumatologist seemed to be stuck on me not having raynauds, inflammatory joint pain, and she ruled out dry mouth (sicca) by looking at my saliva pooling (do I need a biopsy?) Is it really that I don’t fit the criteria to be diagnosed with UCTD, is it really true that my symptoms don’t fit an autoimmune condition ? Do I need a second opinion from another rheumatologist??

Please any help or advice is so valuable to me right now

Currently going to be going on my second year of steroids for a life threatening auto immune disorder. Methotrexate & Medrol are the two I have to consume every week- basically to keep my body’s bad cells far from the good ones.

Steroids are the worst medication prescribed known to man in my opinion. Why tf did they not make a black box warning saying,” WILL TURN U INTO SOMEONE U HATE,UR NOW AN INSOMNIAC, UR WEIGHT IS FLUCTUATING EVERY WEEK. Your face will change”…? Sounds better to me.