r/Autoimmune

Has anyone had success turning things around? I used to be a gym rat and things went sideways in 2017 re:health and all this (many diagnoses not here to get into it atm), worked with a trainer in 2021 and nothing worked. I can barely do chores these days. I miss feeling ok. I’m tired of the migraines and aches.

Everyone (I.e. my doctors and nutritionist) says walking, sleep, salty snacks, and meeting protein with every meal is really all that can be done at the moment.

Does anyone have an encouraging success story I can lean on? Does walking slowly turn back into running without dying for a week? It feels so deeply counterintuitive…

background - i’m dx psoriatic arthritis, MOGAD and hashimotos. i feel like that’s enough.

i’m supposed to go see rheumatology tomorrow at the direction of my neuroimmunologist and i just don’t see a point?

i had some abnormal blood work - my ANA was abnormal, but not because it lit up. it didn’t. he had it reflexed anyway.

RNP 2.7 ref <1

RF IGG 19 ref <6

RF IGM 7 ref <6

C4 low 11

AntiDNA 1:40

ANCA too bright to get a reading.

Just none of that blood work screams bad enough that a rheumatologist will care.

Maybe I’m just trying to chicken out. I don’t know.

I just found out that with ulcerative colitis (the immune disease I have) I am disqualified for the United States Air Force- when I say I’m so upset like when I grow up I wanted to join the Air Force and then go live my life I can’t do that- IM PISSED

I’m looking for advice, resources, grants, assistance programs, or any other tips from you all! Such as wellness services, financial help, jobs or companies that are supportive of hiring disabled folks

I have been struggling with Lupus and other secondary health issues for a while now and it’s become quite debilitating for me. My work situation definitely makes it worse but I feel that I can’t quit or leave because of the job market, price of living here, and medical bills I’m working to pay off. I work a second job that is mostly unpaid and other freelance gigs in hopes of securing a better career situation for myself but it’s tough to break into the creative industry overnight and do the type of work I’m hoping to do. Part of the problem is that having access to full time remote work is sweet for my situation, just not the work environment I’m currently dealing with.

I’m really at a loss. I’ve questioned moving from the city, going on disability leave, or finding a sugar daddy (though I would prefer not have to do any of those things). I love NYC and I don’t want to leave, it’s so awesome to have access to public transportation and walkability. I also would hate to do anything that could jeopardize financial stability long term.

I’m married so my partner does help with a significant amount of our financial burden but I wouldn’t be able to leave my job. This also limits the financial help I can access bc of their income, but with my debt, it really doesn’t extend that far.

I worry about being hospitalized again or needing surgery if I don’t show down and get the help I need or break free of this toxic work situation. Any and all advice would be appreciated.

Psoriatic Arthritis diagnosis recently and prescribed Tremfya. How in the hell does one pay for this lol? My first dose was free and now they want $4500. I’ve been reaching out to various sources while all of my pain and annoyances come crashing back full force.

Edit: I’m on BCBS through my employer which does not cover the “maximizer” plan in my state. Johnson and Johnson paid for my first dose and now I’m kinda stuck getting passed around trying to find some financial help.

I’ve had two ANA tests. I don’t think I have any symptoms. The reason why I was tested was because during my recent cold I had a canker sore type of lesion on my genitalia. It was painful for about 3 days and after a week the lesion went away. Other than that, I don’t think I have any other symptoms.

This is where I’m confused. I don’t have symptoms. I don’t know much of my families history. I do hypothyroidism (hashimotos). Can someone tell me if they’ve had a similar experience?

Here are the results for the first test:

Inflammation & Autoimmune Markers

ANA Direct:

Result: Negative

Reference: Negative

C-Reactive Protein (CRP):

Result: 1 mg/L

Reference Range: 0–10 mg/L

Erythrocyte Sedimentation Rate (ESR):

Result: 6 mm/hr

Reference Range: 0–32 mm/hr

Rheumatoid Marker

Rheumatoid Factor (RF):

Result: <10.0 IU/mL

Reference Range: <14.0 IU/mL

ANA by IFA (Detailed Autoimmune Testing)

ANA by IFA:

Result: Positive (Abnormal)

Titer:

1:160 (High)

Pattern:

Speckled (Dense Fine Speckled – DFS70)

But about a week and a half later I got tested again

Here’s the results of the second test:

Inflammation & Autoimmune Markers

ANA Direct:

Result: Negative

C-Reactive Protein (CRP):

Result: <1 mg/L

Erythrocyte Sedimentation Rate (ESR):

Result: 2 mm/hr

Autoimmune Antibody Panel (ENA)

Anti-Smith (Sm) Antibody:

Result: <20 (Negative)

Anti-U1 RNP Antibody:

Result: <20 (Negative)

Rheumatoid Arthritis Markers

Rheumatoid Factor (RF):

Result: <10.0 IU/mL

Anti-CCP (IgG/IgA):

Result: 6 units

Reference Range:

Negative: <20

(Your result = Negative)

ANA by IFA (Detailed Autoimmune Testing)

ANA by IFA:

Result: Positive (Abnormal)

Titers & Patterns:

Homogeneous Pattern: 1:160 (High)

Nuclear Dot Pattern: 1:160 (High)

Hi, I’m new here and just overwhelmed and trying to figure out what’s going on with my body.

For background, I was diagnosed with endometriosis at 15 and have had two laparoscopies. I’ve always had random symptoms on and off, but over the past few months things have escalated pretty quickly.

I recently moved states, and my mental health has improved a LOT… but at the same time my physical health has gotten worse. It honestly feels like my body finally feels “safe” and is now unloading everything.

Here are the main symptoms I’m dealing with: • Heart rate spikes up to 140 just from standing, walking, or basic tasks • Daily fatigue, shakiness, and feeling weak, legs feeling heavy • Midday “crashes” where I feel like I physically can’t function • Brain fog / “wired but exhausted” feeling • Heart rate dropping into the 40s - 50s at rest • Rashes on face, chest, and stomach triggered by heat, stress, or crying • Sneezing fits for hours after crying or reactions to my own sweat • History of hypermobility (joint issues, past dislocations, etc.)

Some of my recent labs: • Positive ANA (gave me no numbers just said positive) • Jo-1 antibody: 1.9 • CO₂: 21 • Free T4: 0.91 • TSH: 5.46

I also did a DUTCH test that showed: • Low cortisol • Low estrogen • High androgens • “Adrenal fatigue” pattern

Right now I’m being referred to rheumatology and cardiology, but the process has been slow and honestly overwhelming.

I strongly suspect some combination of: • POTS • MCAS • hEDS

The Jo-1 result obviously raised concern for antisynthetase syndrome, but I’m honestly unsure how well that fits overall. I have noticed when I get colds now I do cough alot which o rarely ever do and cough up mucus but it goes away after a week or so. Im just confused.

I feel stuck in this in-between where something is clearly wrong, but I don’t have answers yet.

I’m also a mom of two young kids, so trying to manage this day-to-day has been really hard.

I guess I’m looking for: • Has anyone had a similar mix of symptoms + labs? • If you had a positive Jo-1, what did it end up being for you? • Did anyone start in the POTS/MCAS direction before getting an autoimmune diagnosis (or vice versa)? • What helped you manage symptoms while waiting for answers?

I’m trying really hard not to spiral, but it’s a lot. I’d appreciate any insight or even just hearing I’m not alone.

Hi everyone! I'm doing some research on how people manage autoimmune diseases such as rheumatoid arthritis, psoriasis, lupus, Crohn's disease, among others. How do you track your symptoms and triggers? Would love to learn what works and doesn't work for people? Thanks!

TW: pregnancy loss

Hey all. I’ve been suffering with my symptoms for 9 years but finally just got formally diagnosed…( if you have ankylosing spondylitis I’m sure you got the “it’s sciatica” treatment too.)

I have no issue getting pregnant but now have had 2 losses at 9 and 11 weeks. The 1st loss had a subchorionic hematoma and was a missed miscarriage. The second loss also had a subchorionic hematoma that was so large and caused me to bleed so much that I went into labor and losses the pregnancy.

Has anyone here:

- had recurrent miscarriages

-been on cimzia or another TNF blocker during pregnancy

-Taken plaquenel during pregnancy even though not Lupus positive.

Sorry if this post is triggering for anyone… just feeling very alone.

TIA💗

The number of times I have explained to my doctors about how my *symptoms* are way worse during and after my period, and been dismissed as irrelevant or "interesting." Is infuriating. Or, just given no information. "Oh yeah, that's a thing sometimes." So then I decided I needed to figure out WHY on my own. Decipher info, summarize and represent to question. I am not a medical professional. I am just a patient with a complex body after pregnancy trying to figure out wtheck is going on.

This article (see below) is merely one of many that displays the relationship between immune system suppression or overexpression based on both gender specific hormones and unregulated expression of said hormones. Noted the things that are studied aren't living humans, so they don't see the effects in real time. I'd like an article that discusses that.

Additional cited articles also mention how specific hormones in men make them more prone to specific autoimmune disorders; but actually tend to protect them from more of them than women; due to way less estrogen.

Estrogen; as its main purposes is to prepare the womb for an embedding blastocyst, changes and triggers the immune system to allow an outside agent to exist. That high inflammatory state (leading to ovulation) or pregnancy can change entirely how your body interprets stress, endocrine reactions, autoimmune reactions, etc - because it's being put on high alert.

I'll be reading more of these articles and creating an analysis chart of information to present when I'm arguing against my case and symptoms in the future. Also, might be a good point to write an analysis paper or submit it to be interpreted by a future specialist.

Any new or additional cited information is welcome. Or, anyone who experiences similar trends (specific flare windows related to hormones).

https://pmc.ncbi.nlm.nih.gov/articles/PMC7151910/?utm\_source=chatgpt.com

Hi all, I’m 45 this year and have had joint pain back pain (mostly upper) GI issues, and fatigue for as long as I can remember- since I was a teen. I’ve been to so many doctors, I’ve had so many blood tests. High ANA but every other auto immune test normal. History of auto immune disease in my family. Been to functional doctors. Been diagnosed with fibromyalgia. Been dismissed by 2 other rheumatologists.

Went to a new rheumatologist because it’s been getting worse for the last probably 5-7 years? I have so many weird symptoms and not all of them match up to something specific.

Anyway my new doctor thinks it’s spondyloarthritis. Just did blood work (12 vials!) and then have x rays scheduled. I think my biggest doubt is I didn’t have the SI lower back pain for a long time. It was always upper back, neck and shoulders since I was young.

But I have the joint pain in fingers, wrists, knees, elbows, ankles for a long time. IBS/IBD issues. Pain and stiffness every morning and god the fatigue/exhaustion all the time. I now do have the SI and hip and Lower back pain the last few years but I still think it’s weird because it seems like the major marker. I also have brain fog, dry mouth so bad for so long chapped lips, dry eyes, skin issues, rosacea, hair loss, itchy scalp and bumps, gum inflammation, tmj issues…so many meds give me major side effects and GI issues…,i even had to have a hysterectomy for adenomyosis because my uterus was so inflamed and my periods so bad. I was so hoping it was perimenopause and HRT would fix a lot but it is only helping the hot flashes etc. That’s why my obgyn said to go back to the rheumatologist again since I’ve been on HRT almost two years. (Gallbladder was yeeted in 2007 because it wasn’t working, no idea if that has to do with anything.)

I’m so tired of years and years of all of these symptoms just getting worse and doctors being like oh it’s low vitamin d (brought it up and feel the same), or depression, stress etc.

The good thing is my new doctor is so nice and so thorough. Spent a whole hour with me and seems to really want to help. Meanwhile my psychiatrist prescribed Ritalin for now for my motivation and energy. I’ve tried so many meds for depression too.

I’m just…tired. So tired 😔

anyone with Spondyloarthritis with a lot of these symptoms? Or maybe something else with these?

i'm 28 and have had joint pain since i was like 13, which has worsened in the past few years along with some new general fatigue. i finally got a PCP who didn't just brush this off and ordered a blood panel to check some autoimmune and inflammatory markers. well, her nurse called me and my HLA-B27 was positive and my CRP was high. she's referring me out to rheumatology to investigate further.

doctors just make me really anxious and i want to know what to expect to be asked in this appointment and if there are likely to be any tests during it that i should be prepared for. i'm not completely unfamiliar with specialists, i've seen a neuro since i was in middle school for migraines, but this just *feels* different for some reason.

Hi there,

I’ve been dealing with stage IV (at this point, considered the highest level) endometriosis for a few years now. Bilateral endometriomas on my ovaries, all that jazz. These unwelcome cysts can actually elevate histamine, cytokines, and mast cells, so when my eyes swelled nearly shut for the first time in October, I figured it was the endo having a moment. But then the eye swelling occurred seven more times.

After seeing an allergist and ruling out environmental allergens, he ordered lab work. Everything came back normal (🥳) except ANA, which was homogeneous 1:640 and speckled 1:640. Also SLIGHTLY elevated TPO.

What I would love to know is, has anyone else here either been diagnosed with autoimmune whilst having endometriosis; OR, had a high titer simply due to all the delightful inflammation, but no autoimmune diagnosis? I’ve read plenty about how those with endo are also more…prone to is not quite right, but autoimmune and endo co-occurring is a not terribly uncommon thing. I may also post this to the endo channels I follow, but my brain is so packed with endo data and insight, where my awareness of autoimmune is brand new and having some insight from this community would be greatly appreciated.

First off, I fully understand the struggle to get a diagnosis. The gaslighting and gatekeeping is real. So many of us go through so much just to get basic treatment, and then when that isn't effective we have to keep fighting for the next step.

But we have to talk about this.

Memes that equate "symptoms of life" with autoimmune disease and tell people not to take no for an answer and insist their doctors diagnose them are getting out of control.

Especially memes correlating neurodivergence with undiagnosed EDS.

There absolutely might be a connection. But more and more, every time I see any kind of medical practitioner other than my rheumatologist or discuss my disease, I have to provide a full medical history to "prove" that I am really sick because these diseases are now trendy. I've started to keep screenshots of my most recent blood levels on my phone.

I don't have answers. More visibility is a good thing, more people getting the care they need is a good thing. But when 9 patients out of 10 that approach a GP saying "I think I have X autoimmune condition" just read something online that said that if they don't like tags on their shirts and can touch their toes they have a connective tissue disease and need IVIG immediately, it makes it harder for those of us who are truly disabled to get care.

I'm in my early 20s and have had some symptoms (lingering stuff from COVID) deteriorate in the past few months and am now awaiting blood results to find out what exactly it is, but the doctor is sure it's autoimmune.

I just am struggling to contend with the idea that I suddenly have limits now. That I can't just achieve anything I put my mind to like I used to believe. I'm struggling with it.

I am keen to hear from people who are managing their conditions well and what systems they've set up to make sure they get enough rest without feeling like they're missing out on living or achieving their dreams.

How do you ask for help without feeling lazy?

I'm sorry, this is really scattered and I obviously don't have anything well managed right now, but I guess I just need success stories and people telling me what they love about life to help me get out of this mental malaise about my health. Thank you

I’ve never met anyone with the same combination of chronic illnesses that I have, and it would be really interesting to compare our most significant symptoms and what treatments have helped if anyone out there is an autoimmune match to me! 😅

I have: Hashimoto’s disease, Sjögren’s syndrome, Raynaud’s disease, Ehlers-Danlos Syndrome (hypermobility type), and POTS (not exactly autoimmune but related).

My main symptoms are chronic pain from arthritis in my hands that began at age 14 and arthritis in my spine, along with fatigue, random flares of symmetrical rashes, and chronic kidney problems.

My current treatments are 200 mg of hydroxychloroquine and 1.5 mg of low-dose Naltrexone.

Thanks for reading! Feel free to comment even if you don’t have exactly the same conditions. 🫶

Hi everyone, first of all sorry for any mistake but english is not my first language.

I'm currently on the process of a diagnosis after years of debilitating symptoms that severly impacted my daily life and my mental health.

My family doctor prescribed me some basic labs to start and it came back as ANA negative but with ENA screening positive to Anti-ro60.

Has anybody experienced this kind of result?

My fear is that with a negative ANA my symptoms may be dismissed even tho I didn't even consider AI in first place, my doctor was worried I may have one based on symptoms only.

Before I start, my doctor has refused to test me for auto immune diseases as lupus runs in my family so I could get a false positive... the main symptom she looks for in lupus is painful swollen hands.

Ive had symptoms of autoimmune issues for a few years at least.

Most recently I've noticed I get "sick" after periods of stress.

Sept 2025 my mom was hospitalized, I got sick. No one else did.

October 2025, mom got hospitalized again, I got sick again. Again no one else is sick.

I got back from a trip, and started working again after a 3 year break to raise my kids. Sick again. And its not your typical starts with a sore throat, a little runny nose and slowly gets worse. This is an all of a sudden body aches, extreme fatigue, sore skin, sinus inflammation, temperature around 100°, and an insanely itchy scalp.

Im going to have to try to see a functional medicine doctor..

Anyone else get similar symptoms?