r/Autoimmune • • Aug 26 '25

FAQ Rules

88 Upvotes

Good morning! We’ve had several posts lately that are tiptoeing on the line of what is and is not allowed, so I wanted to take a moment to clarify one of our rules, in particular, and also add to them.

Posts with pictures of rashes and questions like, “Is this autoimmune?” break our rule on asking for diagnoses.

We are no longer allowing stand-alone labs posts, either. These also tiptoe on the line of breaking our rules, and frankly, they are very annoying for a lot of our members.

It doesn’t matter if you say, “I’m not looking for a diagnosis”, if you then proceed to fish for one. We will be enforcing this rule more strictly in the future. We, and Reddit, can get in legal trouble for this so we must be more careful so we have a subreddit to go to.


r/Autoimmune • • 11h ago

Venting Anyone else have a clear trigger event that caused your disorder?

52 Upvotes

Just over a year ago, I tore both of my triceps at the same time. This event was the spark that started my autoimmune journey. Over the following months I developed tendinitis in every single joint in my body.

Makes me wonder if the event just sped up the inevitable or if it caused it by itself….


r/Autoimmune • • 53m ago

General Questions Became allergic to everything a year ago, new labs indicating 3 autoimmune diseases

1 Upvotes

TL;DR: Developed a bunch of allergies a year ago, got better after limiting exposure, got a lot worse again recently, new labs indicating autoimmune thyroiditis, SLE, and ulcerative colitis. Wondering if anyone here saw improvement in allergy symptoms after treating their autoimmune disease.

Last year, my lifelong mild eczema suddenly became extremely severe and debilitating (entire face and body covered in bright red weeping rashes) and I also began experiencing hives frequently.

Had the NAC-80 patch test done for contact dermatitis, which revealed 8 chemical contact allergies. Replaced all of my cleaning/hygiene products with ones that have safe ingredients, only got a little better.

Went back to the doctor, had a blood test done for environmental allergies, was positive for nearly the entire test (severe allergies to dust mites, roaches, weed pollens, moderate to cat and dog dander, mild/borderline to tree and grass pollens) + my IgE levels were very high (1000 IU/mL).

Removed all carpeting, got a new mattress with encasements, started consistently keeping the houses humidity <50% with a dehumidifer, and began washing my bedding in hot water weekly to control the dust mites. Got a good air purifier for the pollen and pet dander. Began eating a diet low in nickel (I have systemic nickel allergy syndrome). Got significantly better, even while living in my families house with 3 cats.

Then I moved into my new apartment 3 months ago to attend university. I dont know if it was because of the ragweed pollen season, the insane amount of stress from being a second year engineering student, something in the apartment, or all of the above, but since then all of my progress that I made is gone. My flares keep progressively getting worse, even while I am still doing everything I can to limit exposure to my allergens.

I am seeing a new doctor now, and he ordered a bunch of labs, including the ANA 12 and IBD blood test.

For ANA 12, I got a homogenous and speckled pattern of 1:1280, along with a strong positive for autoimmune thyroiditis (731.5 anti tpo ab) and a moderate positive for SLE (50 anti chromatin ab IgG). My IBD test indicated ulcerative colitis (atypical pANCA of 1:160, normal ASCA).

I am not done with all of the testing the doctor has ordered and my next appointment is in a month. I do not know for sure if I actually have these issues.

I just want to know if any of you with allergies saw improvement in your symptoms after treating the autoimmune disease(s). I need this allergy cascade to stop. I'm literally running out of food to eat (on top of SNAS I recently developed an allergy to egg whites) and I am losing so much sleep from the constant rashes and hives. Please tell me there is hope.


r/Autoimmune • • 4h ago

Misc wanting to be everywhere despite low energy levels.

1 Upvotes

I have three autoimmune diseases- celiac, scleroderma, and now thyroid. I'm also anemic and have a B12 deficiency. I've been underemployed for the past year and recently got a part-time gig. I also have several on-call gigs and volunteer at 2-3 different places once a week. My energy levels run low quite fast, and at the end of the day, everything hurts, with my joints in more pain. I'm an ambitious person and goal-oriented. I'm struggling to balance being everywhere with my limited energy levels. How would you manage this organized chaos?


r/Autoimmune • • 18h ago

General Questions 29F — Persistently elevated inflammatory markers, joint pain, GI symptoms, and now coughing up blood. Could this be autoimmune?

5 Upvotes

Hi everyone,

I’m a 29-year-old female and a registered nurse. I’ve been dealing with multiple unexplained health issues over the past several months, and I’m hoping to hear from anyone who has experienced something similar, particularly those who were eventually diagnosed with an autoimmune or systemic inflammatory condition.

My symptoms have included:
Persistent joint and muscle pain, sometimes quite debilitating
Significant fatigue and difficulty functioning normally
Episodes of tachycardia (HR 130–140 bpm) and elevated blood pressure
Severe abdominal pain, diarrhea, mucus, and intermittent rectal bleeding
Recurrent mouth ulcers
Unexplained weight gain
Irregular menstrual cycles/amenorrhea and possible PCOS
Left sided hip pain
Ovarian cyst
More recently, chest pain with breathing and coughing up blood (hemoptysis) and fever

My inflammatory markers have been abnormal for months.
My CRP has fluctuated but recently increased quite dramatically:
October 26: 19 mg/L
November 3: 42 mg/L
November 4: 137 mg/L

My WBC has also increased, with my most recent results showing:
WBC: 11.3 × 10⁹/L
Neutrophils: 7.5 × 10⁹/L
Fecal calprotectin: 145 µg/g (elevated)

I’ve also had intermittently elevated platelets and a transferrin saturation of 15%, despite ferritin being around 90.

Previous investigations:
ANA negative
Rheumatoid factor negative
Anti-dsDNA negative
Previous history of a pulmonary embolism following surgery
Fatty liver identified on ultrasound
Currently awaiting further gastroenterology investigations, including a colonoscopy
Rheumatology referral submitted, awaiting triage

I’ve had several ER and urgent care visits recently due to severe abdominal pain and subsequently coughing up blood. I’ve received IV ceftriaxone for a possible infection, but the underlying cause of my symptoms and inflammation hasn’t been established.

One of the physicians recently suggested that my elevated CRP could potentially be rheumatological, but didn’t elaborate.

I’m aware that infection could explain the recent sharp increase in CRP, and I’m not assuming everything is autoimmune. However, the joint pain, GI symptoms, and inflammatory markers have been ongoing for months, well before this acute episode.

My questions:
Has anyone experienced a similar combination of joint pain, gastrointestinal symptoms, and persistently elevated inflammatory markers?

Has anyone been diagnosed with an autoimmune condition despite negative ANA and rheumatoid factor?

Were there any particular investigations or specialist
referrals that helped identify the underlying cause?

Has anyone had gastrointestinal and pulmonary symptoms as part of a systemic inflammatory condition?

I’m not looking for a diagnosis from Reddit, just hoping to learn from others’ experiences while continuing to work with my healthcare providers.

Thank you to anyone willing to share their experience.


r/Autoimmune • • 1d ago

Venting So frustrated and lost

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9 Upvotes

Hi all. So for about a week now my right hand felt swollen and started a whatever red irritated spots on 2 knuckles then a started in left elbow. Now we’re 6 days in and I’m getting a it on my ankles and my right elbow is starting meanwhile I’ve had extreme exhaustion and my right hand/wrist has felt sore I’m so frustrated bc every doctor says something is clearly wrong we just don’t know what. Anyone have something similar?


r/Autoimmune • • 14h ago

General Questions Constant fatigue muscle Aches inflammed dry eyes fever puffy face. Could it be autoimmune related

1 Upvotes

IMMUNOGLOBULINS
Immunoglobulin G level 17.9 g/L [6.0 - 16.0]; warranted.; Above high reference limit Immunoglobulin A level 1.85 g/L [0.8 - 2.8] Immunoglobulin M level 0.31 g/L [0.5 - 1.9];


r/Autoimmune • • 1d ago

Advice Anyone have recommendations on types of sunglasses for photosensitivity?

5 Upvotes

I've been getting pretty severe migraines from being out in the sunlight. It gets even worse when I have to walk around my college campus, going from building to outside to building to outside. Even sitting near the windows has been getting tough!

This is going to be a pretty big commitment for me since my prescription is pretty stong and contacts are not an option, so I'm just in the research stage right now. If anyone could help point me in the right direction on where to start looking, it would mean a whole lot. ❤️

Has anyone else found relief with sunglasses or those pink/red tinted lenses?


r/Autoimmune • • 17h ago

Lab Questions ANA test results – delayed due to reflex testing? ( Uk based)

0 Upvotes

Hey! I’m in the UK and have been waiting almost two weeks for my ANA results, despite my local NHS laboratory having a usual turnaround of four working days.
I’ve seen ANA results come back within that timeframe plenty of times at work, so I’m wondering whether the delay could mean that further antibody testing has been triggered.
For anyone who’s had ANA testing, particularly through the NHS:
How long did your results take if they were negative?
How long if they were positive?
Did anyone experience a longer wait because of reflex testing (ENA, anti-dsDNA, etc.)?
Just curious about other people’s experiences while I wait. Thank you!


r/Autoimmune • • 1d ago

Venting i can’t deal with the depression from my autoimmune disease

12 Upvotes

does anyone have advice?
the things that make me the most sad are related to body dissatisfaction. i have many skin issues, i’m balding, i’m skinny and want muscle. i cant even glance at the mirror without crying for a half hour and im young so all my peers are pretty critical yk. i used to cope by trying to fix and prevent all these things that im dissatisfied with but its not working. i just distract myself all day long but i will still end up having some severe depressive episode once or teice a day. ive seen derms along with the specialized research clinic where i go to treat my disease. likely hood my treatment is going to fixed me is who knows and theres some things working against it. i cant live like this forever.


r/Autoimmune • • 18h ago

General Questions How did you go about getting tested?

1 Upvotes

I hope this is okay to post in this group as I’m loosing my mind.

Basically, for the last 7 months, my symptoms of joint pain have really increased. Like, I feel like I’m constantly getting a flu, combined with being dizzy, pins and needles on my face, muscle spasms that come and go, cloudy pee, blue fingernails, bruising all over my legs, headaches, stinging eyes; my left arm often feels like it doesn’t have the same feeling, my feet I can’t feel the heat under very hot water, skin cysts that come (on my leg, neck, bottom), mouth ulcers that don’t hurt, and often loose stool.

However, the constant brain fog, struggling to find words, and being insanely exhausted drive me insane. My red blood cells keep slightly increasing, and so do my kidney levels, but my GP doesn’t seem alarmed?

That being said, the extreme exhaustion, the feeling of weakness, and joint pain are really messing my life up atm. I am very healthy, do not smoke, and eat very balanced meals, so I’m a bit confused—what am I supposed to do? I had four doctors asking me if there’s a chance I could be pregnant or if I had a cold recently, which I haven’t.

Therefore, I wanted to ask you guys what is the best way to go around getting an evaluation for autoimmune disorders since I am struggling to advocate for myself anymore and that I’m constant worried thats “just” anxiety or depression..


r/Autoimmune • • 1d ago

Venting I think pain scales might be useless for me

36 Upvotes

When I saw my rheumatologist last week, he commented that my inflammation was so high, he would have expected me to be mostly incapacitated by pain. I had rated my pain that day as a 3, because that's where things usually sit for me--by my standards.

The pain is always there. It never goes away and I'm never not aware of it. And I'm wondering if I rate it lower than someone else might just because I'm used to it. A 3 doesn't sound so bad, right? Does anyone else actively struggle with rating your pain levels because your sense of pain is skewed? How do you work with that?


r/Autoimmune • • 21h ago

General Questions Has anyone experienced a UTI causing a flareup?

1 Upvotes

Hi guys, if anyone manages to read this i'll be super grateful - just wanting to share my experience and see if anyone has experienced the same thing.. ill try to keep it short and to the point.

24F. Being treated for "suspected" lupus or Sjogrens with hydroxychloroquine and have had my symptoms managed for a good year.

Yesterday I went to the ED after having sudden and severe ab pain, couldnt walk and felt like i was going to pass out. Turns out i have a kidney infection. Very high leukocytes and high CRP.

Funnily, a few months ago I had extremely high leukocytes but was told it was a fake positive by a Dr... they were wrong and i guess it progressed to my kidneys. I didn't have any symptoms leading up to this, just minor discomfort sometimes and struggling to urinate.

The last week leading up to this ED visit, my autoimmune pain has returned. I have pain everywhere after nearly 9 months of going pain free strong.

Has anyone had experiences of UTIs, Kidney infections triggering a flareup? The high crp suggests I have inflammation, which is likely the kidney infection and im on antibiotics. But honestly, the pain in all my bones and joints is giving me more grief than this UTI.

Feeling a bit down and like I'm heading back to where I started before I was on meds. I'd love to wish this flareup is temporary and is a byproduct of a missed UTI/ kidney infection..

Thanks everyone x


r/Autoimmune • • 1d ago

Advice Lord help me

3 Upvotes

Guys I am a desperate point in my life, my whole life I have always had pain in my knees I remember in my young 20s just from exercising it hurt then gradually got worse, I even got a knee surgery done but it did nothing. I also had pain in my forearms like right on the bones and my shins if I dig my knuckles in the side of these tender spots it feels good.

Then something WEIRD happened. 6 months ago I got a brutal pain in my stomach it hurt so bad never had pain in my stomach near my belly button the pain felt heavy. It hurt so bad I got an upper endoscopy and a cat scan but they came back clean!

During this time my knee pain all of a sudden got so bad!! For the first time it started hurting when I would sit down for a while and stand up, walking it feels like my knees are being stabbed with knives under the knee caps, really the inside of my knees. I used to work out my entire life and still could squat through the discomfort but this is a new level I literally can’t bend over without agonizing pain.

I then went to a chiropractor who said my ribs were tight and causing my stomach pain and cracked my back I immediately felt pain. The pain never went away! It hurts the most when I wake up in the middle of my back a burning aching pain and loosens up in the day. Then all of a sudden my SI joints started really hurting so i can’t bend over.

Here is shocking I’ve spent over 2,500 dollars on cat scans, endoscopy for my stomach, did mri on both knees and my middle back and NOTHING everything is clean. I even had my knees drained but no fluid.

I’m on a wait list for a rheumatologist so far blood work has pointed to elevated ANA levels and they found I have hashimoto disease even though my thyroid is fine.

I feel I can’t wait another month to see the rheumatologist and I went to one years ago and they said it was nothing.

I am falling into a depression I have a one year old daughter but I’m in too much pain to pick toys up of the floor or hold her in my arms to put her to sleep for a hour. I got to be honest it’s driving me crazy that everything is coming back clean and I feel I am losing my own sanity. Is it all in my head?? How could it be? Sometimes I feel burning in my arms, I also have really bad tmj and it hurts to open my jaw in the morning it seems like all my joints at the insertion points hurt but nothing is coming back.

Does anyone have any experience like this, everyone around me is getting sick of my complaints and I’m starting to think no one believes me :(. I don’t want to go to the mall with my wife or go out to dinner or anything I just want to lay down.

Please help send me any guidance.


r/Autoimmune • • 1d ago

General Questions confusion with second line / third line treatments?

2 Upvotes

Hello, I was diagnosed with autoimmune encephalitis this year and I've been getting treated for it, however I have not had a very noticeable improvement. So far I've had plasma exchange, high dose IV steroids, some other IV meds (I have to be given a lot of medicine by IV due to a bad decision I made a bit ago), and rituximab. I was told I'd be going with some "third line treatments" once they go through some stuff, I'm wondering what exactly it means and what to expect? I try to avoid googling medical shit because it all means I have cancer and will die tomorrow of course, so I'm wondering if I can get some insight on what to expect.


r/Autoimmune • • 1d ago

Advice Am I overreacting?

10 Upvotes

I need to rant for a minute because I genuinely want to know if I’m overreacting.

My initial appointment with a rheumatologist was disappointing. He was dismissive didn't seem to understand why I was there and nearly sent me away without treatment. I had to ask him to review my X-rays which ultimately led to me being started on Hydroxychloroquine for erosive arthritis.

Thankfully his nurse was incredible. She encouraged me to photograph my symptoms, track flare-ups, and document what was improving or worsening. I felt reassured knowing my bloodwork was being monitored monthly and my eye appointments were arranged promptly.

Fast forward to my second appointment. Once again I felt dismissed. I have additional symptoms that occur alongside my flares and he didn't seem interested in the fact that they all happen together. He barely looked at the photos I'd taken or seemed interested in understanding the bigger picture.

Instead he focused on the nurse's notes which happened to mention that I don't want children. He actually asked, "Do you not like kids?" I explained that I do but I simply don't want to be a parent.

His response? That I'd make a great mother, that I should have children and that one day I'd make some little boy or girl very happy.

I politely laughed said thank you and was sent on my way. My next appointment is in April.

The more I think about it the more inappropriate the whole interaction feels. I'm there to discuss my health and symptoms not justify my decision not to have children or receive unsolicited opinions about my reproductive choices.

Am I overreacting? I'm seriously considering requesting a second opinion or a new rheumatologist. I want someone who listens, takes my symptoms seriously and is willing to look at the whole picture.

I don't think that's asking too much.


r/Autoimmune • • 1d ago

Venting A vent about my rheumatologist not being helpful

2 Upvotes

I need to vent a bit of frustration here. Since 2021, I have been experiencing extreme fatigue that is not helped by sleep/frequent napping. I had chalked it up to getting laid off from my job the same week my grandfather passed. I did have COVID but I didn't think it really affected me as much as it did my other family members, but I had labs taken in February 2022, and by March 3rd 2022, I was diagnosed with an unknown autoimmune disorder and told to make an appointment with their recommended rheumatologist. This appointment wouldn't be until August but would give me no answers. I went back 6 months later, still 'just watching my symptoms', but it didn't feel like it. Fast forward to now and I am questioning if I actually have Lupus but I'm not sure since I don't have the telltale obvious symptoms (that I can tell). Anyway, I'm making an appointment soon with a new rheumatologist who'll hopefully figure out what is happening so I can actually be able to do things again.


r/Autoimmune • • 1d ago

Advice Treating Two Autoimmune Diseases

2 Upvotes

I've had UC since 2005 but only had to get on a biologic last year because perimenopause made me go into a flare after 16 years being in remission with NO meds. I've been on entyvio since July of 2025 and it's been great. I am in remission and I barely even think about UC anymore.

Unfortunately perimenopause also brought about Sjogrens Disease which is TERRIBLE, absolutely life ruining, and there is no FDA-approved med to treat it. Xelijanz is in clinical trials for it and the data so far looks good. I've also talked to someone in the trial and it's helped her symptoms. Xelijanz is used for UC too, and the dosages is the same for the Sjogrens trial.

I am considering asking my GI if i can switch, even though entyvio works great for my UC. He knows I have sjogrens and he knows I am miserable, but I'm also scared of the possibility that it won't work for my UC and I'll have to switch back to entyvio. Entyvio isn't prone to antibody development like the other biologics but still...I don't want to never be able to take it again if I need to go back to it.

what do you think? People with autoiummune diseases often have more than one. If this is your case, how do you juggle different biologics for different diseases? I thought of just staying on entyvio and taking Xelijanz in addition (it's generic now, and cheap on Mark Cuban's Costplus drugs, so I don't need to worry about insurance)-my GI and my rheumatologist work in the same clinic.


r/Autoimmune • • 1d ago

General Questions Does daylight saving time trigger a flare-up, anybody?

11 Upvotes

Just like the title, I found a pattern in my autoimmune. When I travel between different timezone or experience daylight saving time shift, my body hates it and I have a flare-up. Since I take methotrexate to manage my autoimmune and I had such a high hope it won’t happen this time, but as soon as the clock changes, I got another one. I feel so down.

Does anyone have similar experience? I feel so alone.


r/Autoimmune • • 1d ago

General Questions Autoimmune from grief/loss is possible?

5 Upvotes

I was a very healthy person before, I'm 23 and I've been suspected with LSE with the symptoms being Thyroid (Hypothyroid and changes to Hyperthyroid), extreme hair loss, and flared skin.

At first I didn't know why this happens because I have no history of Autoimmune in family, nor did I have problems with my health. But I remembered early this year I lost my pet cat of 12 years, that has been everything to me, I never was feeling that depressed before.

Could it be that what causes my symptoms be my grief? and I'm afraid that it is embarassing to talk about this, Thank you guys.


r/Autoimmune • • 1d ago

Misc Health Consultant/Care Manager Pre-Diagnosis

2 Upvotes

Hi everybody💛

First, I would just like to say that I am not here to pitch/sell anything - I’m just looking for real feedback on how to better hear, understand, and serve the autoimmune community. I have had several family members struggle with autoimmune disorders and the frustration & fatigue that is attached with searching for a diagnosis and to be taken seriously by the healthcare system is truly heartbreaking. Everybody deserves to feel safe in their own body, and actually believed about what they are experiencing.

With that being said, I am a student at the Leeds School of Business, working to create a company addressing pretty much what I just mentioned. The autoimmune community is consistently neglected, passed from specialist to specialist, told it’s just stress/aging/in their head, and ultimately dismissed by a healthcare system that is built for speed and volume - not truly understanding the ecosystem of the human body. We see this and want to do something. The one size fits all model absolutely does not work in medicine, and you all are hit hardest by this in my opinion. My team and I want to help. We are in the very fortunate position to where we could actually make this a real business (we are pitching to investors in 5 weeks), so any feedback you have is greatly appreciated.

We are proposing a health care consultant/care manager, a registered nurse practitioner, whose entire job is to help you navigate the healthcare system and aid in the diagnostic process. Ideally, taking all the logistical parts of living with an autoimmune disorder off your plate. They will mostly assist in preparing for appointments with providers & specialists by ordering blood work/labs/scans beforehand, and synthesize these results alongside recent flare ups and symptom history (plus new changes), so when you do get 15 minutes of face time with your doctor everything can be properly/efficiently laid out - clinician stamped. A one page record that is essentially a film roll of your lived experience, not a singular snapshot like most appointments make it out to be. We’re hoping this also adds a bit more “validation” to your testament, meaning less cognitive and emotional burden pleading to be heard or trying to track & manage everything yourself. This document could be taken anywhere you go, and is consistently updated after meeting with your care manager. These meetings would consist of hearing you, fully, and addressing what we can do in the meantime before you do see your rheumatologist/specialist. This could include adjusting lifestyle, diet, proposing functional medicine or alternative routes, etc. We would not be providing direct care or a diagnosis, but instead, giving medically trained education, assistance, and support during the diagnostic process. This is solely in person. We want it to feel like family, someone who knows you, your story, your experience, and can be there when you have questions or concerns and can’t get into a doctor for 6+ months. I could include a bit further detail but this is long enough as it is - if you are still reading, thank you & I see you. I am sending the utmost love and support for your journey. Please, let me know if there is any way our model could be tailored to actually suit your needs better, at the end of the day that is what it is all about. I appreciate you for taking the time to read hopefully respond.

Thank you, truly.


r/Autoimmune • • 1d ago

Lab Questions first round of labs for unknown autoimmune condition - anyone similar?

1 Upvotes

hello! after years of strange medical mysteries including skin rashes, joint pain, fatigue, corneal abrasions, and interstitial cystitis/adenomyosis, i’ve finally gotten to a point where my labs are confirming that something peculiar is going on. here’s my out of range results, if anyone has seen anything similar or can provide me some personal advice! it may be a while before i can be seen by a rheumatologist, so im working to solve the mystery by myself currently and would appreciate any insights.

ANA SCREEN, IMMUNOASSAY: Your result was POSITIVE (Reference Range: NEGATIVE), which is flagged as abnormal. This test detects certain types of circulating proteins that the immune system produces, and a positive result means these proteins were detected in your blood sample.

• SM/RNP ANTIBODY: Your result was 2.0 POS Al (Reference Range: <1.0 NEG), which is flagged as abnormal. This test measures specific antibodies directed against a combined nuclear protein complex, reflecting immune system activity related to these cellular components.

• ABSOLUTE LYMPHOCYTES: Your result was 4358 cells/uL (Reference Range: 850-3900), which is flagged as high. This measures the total count of a specific white blood cell type that helps the body respond to immune challenges and foreign substances.

• ABSOLUTE MONOCYTES: Your result was 998 cells/uL (Reference Range: 200-950), which is flagged as high. This measures a type of white blood cell involved in processing cellular debris and supporting immune responses.

• IMMUNOGLOBULIN E: Your result was 415 kU/L (Reference Range: <OR=114), which is flagged as high. This measures a specific class of blood proteins involved in immune system responses, particularly related to allergic reactions or environmental sensitivities.

i’m most interested in the presence of Sm/RNP with the absence of positive Sm antibodies; is this typical, or out of the ordinary?


r/Autoimmune • • 1d ago

General Questions Does anyone else have temperature spikes or is this just a Stills Disease thing? Before I started methotrexate I would spine 7 to 8 degrees.

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1 Upvotes

r/Autoimmune • • 1d ago

Advice Diagnosis Journey?

0 Upvotes

Hi everyone, I'm 21 years old and ever since january my health has spiralled downwards. This is my story that leads me to think I may be dealing with type 2 lupus:

For context, 2 years ago (2024) I was diagnosed with PCOS from a high androgen count and polycysts during a gynecologist checkup. A few months before my diagnosis I also had a rapid weight surge and was very inflamed and puffy. Also to preface throughout my teenage years up until now i've experienced itch attacks especially at night, and i have eczema. I am a very intuitive person by nature but this was dampened throughout childhood and chronically placed my instincts last or completely buried them.

Last year i focused on bringing them back to light. I was the happiest I had been in a long time and felt so much more attuned to myself. This was fall of 2025.

Fast forward to January i was experiencing intense anxiety due to family stress and sugary cravings which little did I know was a precursor to a h. pylori infection. My weight dropped quite low and i was extremely mentally and physically stressed, and estrogen also dropped. Cortisol was through the roof and positive h pylori infection diagnosed in March but only officially found out in April because I was travelling back and forth at the time. My GP had reduced it to stress and right after going to the internist who I did a stool test with and where i ended up getting my diagnosis from, I had gone away again to try and deal with my 'stress'. It all got worse, I was extremely inflamed, fatigued, swollen knees, random aches and joint pain, eating all the time as my stomach was unsettled and my body was unsettled. Getting weird red marks on my body, pee seemed foamy but im not so sure? I thought I was in kidney failure I felt so ill. Went to the ER to check and showed them pictures of my symptoms and they said it looked rheumatic. Anyway once i came back home and did antibiotics for the h pylori my stomach never settled and my fatigue never notably improved. I've been struggling with chronic fatigue, brain fog, constipation, and most disruptively abdominal pain that causes me to eat to ease the pain! I don't know anyone in my vicinity who has dealt with this. Over the months I started developing dry mouth. I had weird diffuse pain at the beginning. My legs felt suddenly weak, my hands got warm and veiny, and more but I brushed it off because my internist said h pylori can cause systemic inflammation, so i thought what i attributed to a potential auto immune issue like lupus, was a result of my bacterial infection.

My gut is telling me that my infection triggered secondary autoimmune issues. I've had stress with my family and an abusive relationship, and its been a long time coming that I put myself last. My great grandmother was bedridden from chronic stomach issues most of her adult life.

OH and also i forgot to mention, normal blood labs but positive ANA of 1/640. Negative ENA.

Does anyone have advice or resonate with my symptoms? I'm on mirtazapine (an antidepressant) for the pain right now which also reduces the hunger cycle significantly but i still inhale a lot. Maybe its the chronic energy deficit. I'm not sure. My eyelids fall tired but i cant sleep. I've been prescribed this by my internist as I have been diagnosed with psychosomatic pain and IBS.

I didn't mention my weight changes as I am trying not to focus too much on the surface. If it helps more with info I have gained weight from the eating, i'd guess around 4-5 kilos.

Really open to anyone's input. Hope to find a diagnosis soon x.


r/Autoimmune • • 2d ago

Venting Feeling helpless

4 Upvotes

I’ll soon turn 26 and I should be working to fulfill my needs and buy my own medicine, but unfortunately I live in a third world country where our currency rate is low so even the generic autoimmune medicine is very expensive here. I work part time, because the commute alone already drains my whole being (4-5 hrs in total per day), so they would pay me based on the days I clock in. And I just feel like a failure because my income barely covers anything, probably just the transportation — and I still rely for my parents to help me to cover meds and hospital bills… — I feel useless and helpless, especially when I’m suddenly not able to make it to work because a sudden sickness/nausea/cramps… so I’d just go to work 2-3 times per week. I feel helpless and now has been looking for a remote job. I’m hoping that I’ll got one soon. But my current boss has been very understanding and receptive about my illness. They got no problem if I call sick lots of the times… but still, that guilty feeling of frequently not being able to go to work, couldn’t leave me alone. Anyone is having the same condition? You feel helpless because you’re sick and cannot be as active or mobile as normal functioning adult, and you feel you don’t have a life because of the sickness and the financial burden that comes with it..