r/Autoimmune

Hey all…
I am diagnosed with Rheumatoid Arthritis, Hypothyroidism, Type1 Diabetes, Coeliac Disease. I am sure I can’t be the only person who has such a collection of autoimmune diseases, but I certainly feel very alone..

It’s such a challenge to attempt to balance all these conditions, the fatigue that accompanies them.

I’m asking for some hope, I’m trying to lose weight after a long period of time housebound. I’m eating a calorific deficit, I got to the gym or to aqua aerobics almost every day of the week and walk 10,000 steps minimum almost every day too. I don’t lose weight, in fact it’s slowly gaining.. How is this possible? I do have a red bull each morning to push myself into moving, surely this can’t be detrimental compared to all the good I am doing?

Is anyone else here diagnosed with a multitude of autoimmune diseases and capable of losing weight? Or is it truly hopeless? Thank you in advance for any input any of you can give me..

Last semester at the University of Toronto I took a course that exposed me to the world of autoimmune disease, chronic illness, and the broader challenges within healthcare systems. At the time I found it intellectually interesting, but over the last few days I’ve gone much deeper down the rabbit hole.

I’ve spent hours reading patient stories, research, forums, and support communities — and one thing has become very clear to me: there’s an enormous gap between what patients actually experience day to day and what healthcare systems meaningfully capture.

People talk constantly about:
- fatigue
- flare patterns
- medication side effects
- brain fog
- diagnostic delays
- feeling dismissed
- fragmented support systems

Yet so much of this information lives scattered across Reddit posts, Facebook groups, notes apps, spreadsheets, and isolated conversations.

I’ve become really interested in the idea of building tools around autoimmune and chronic illness communities — not just another “health app,” but potentially infrastructure for better patient insight, connection, and research.

I’m still very early and mostly trying to learn. If you live with an autoimmune condition or chronic illness, I’d genuinely appreciate hearing about your experience and what you think existing tools or systems are missing.

I'm wondering if anyone else has a diagnosis journey similar to mine. (not looking for a diagnosis)

When my symptoms started, I ended up getting my ANA tested as a first step, and it was 1:320, and a year later, it was 1:640. I have a family history of autoimmune disorders (mainly RA). My symptoms have never really fit the traditional inflammatory diseases, though. Instead of joint pain and swelling, I have deep nerve and muscular pain that doesn't target any of my joints. Though some pieces fit into a few diagnoses, my symptoms and testing never led to anything.

My rheumatologist did some tests, and all came back mostly normal (except for my consistently positive ana). I saw a second rheum later on, and she suggested the issues could be neurological (potentially MS) instead.

I'm now going through the whole process again with a neurologist.

Did this happen to anyone else? I know some neuro diseases can have a positive ANA, but getting to this point has taken years and has been confusing.

Did any of you start with a rheumatologist but end up with a neurologist for treatment and diagnosis instead? Thanks : )

My little boy just turned 5, and I am writing this with a very heavy heart because I am honestly scared and overwhelmed.
Over the last 2 years, my son had some tendon findings and swelling in a couple of fingers and around the ankle/heel area, which eventually led us to imaging. Ultrasound and MRI both showed tenosynovitis. We are waiting to see pediatric rheumatology, but the appointment is still far away.

What has scared me recently is that his ANA turned positive this year (it was negative until last September), and he also had positive anti-RNP antibodies. His inflammatory markers otherwise were mostly okay.
He has also had consistently elevated eosinophils/basophils for almost 3 years, usually ranging around 1000–1500, once or twice closer to 1700, but they usually come back down again. His doctors had mostly connected this to severe eczema/atopy. He has been on Dupixent for eczema, and honestly Dupixent gave him his life back from the skin perspective. His eczema is very well controlled now.

But now with the ANA/RNP and tendon findings, I am terrified that we are walking toward some connective tissue disease or autoimmune diagnosis. Today the orthopedic doctor who looked at the MRI sounded much more concerned than the pediatrician and even more concerned than the rheumatologist who briefly reviewed things online and told us to wait for the in-person evaluation. I am attaching his MRI here, the orthopedic told that there is synovitis in two fingers which is not expected in a kid his age.

I think what is breaking me emotionally is that he is only 5. He has already gone through so much with eczema, allergies, eye dryness/redness from Dupixent, bloodwork, imaging, appointments… and now I feel like I am watching every little thing in fear.

I don’t even know exactly what I’m asking for. Maybe just hope, perspective, or hearing from parents whose children had positive ANA/RNP or tenosynovitis early on. Did things stabilize? Did anyone’s child go on to live a full normal life even with an autoimmune diagnosis? How hard are the medications? Is life hanging in by a thread for our family? Do I need to keep looking for everything to figure out and rush if I see something wrong. I can’t see the internal organs but then what can happen? It is an unknown scary situation for me.

I keep reading things about connective tissue disease and internal organs and it is terrifying me. I know nobody can diagnose my child online. I think I just need to hear from people who have been through uncertainty like this.

Hi, I’m a 26 yo female with POTS, EDS, possible endometriosis, and an autoinflammatory disease associated with the NOD2 marker. It all started around 3yo with monthly fevers and sores around and in my mouth. I had PFAPA and got my tonsils removed, that fixed everything until I hit puberty. Once I started my period I developed pots and got diagnosed with hEDS. Fortunately pots is the least of my worries these days. My reoccurring fevers have worsened and it’s always during my luteal phase. I also struggle with dermatitis and all over musculoskeletal pain. I have a theory that being in my “fertile” years plays apart of it. Instead of my flare being for just a week it feels constant. I’m on illaris and it’s not helping. I’ve been on for almost a year and have increased doses. I’m looking for people with similar diagnoses who have benefited from hormone replacement therapy or a hysterectomy. It feels like it’s the only thing ruining my life.

Anytime I reach out for advice or support on here I just end up downvoted and I'm so completely over this community. Is there anywhere that people can recommend to actually find support?

Esr-Wes-crp

ANA by Ifa Rfx Titer/pattern

CBC with diff/platelet

Do I wait for a flare up to do them (or force a flare up?)

Not being the most self-aware human around, I have finally put two and two together on a long list of things I’ve had for years that might point to something autoimmune going on. I have a doctors appointment in a couple of weeks where I want to raise this possibility and I’m wondering if anyone has any advice for being taken seriously.

I first went to a doctor with unexplainable fatigue about 3 years ago; they checked my iron and thyroid, both normal so I was basically told ‘people are tired sometimes’. Ok, I think, that sucks but I guess this is what getting older feels like (I was 34 at the time). Fatigue never really went away, I’ve raised it intermittently, but iron and thyroid always come back fine and no follow up ever suggested. Unrelated, my hands were swollen and painful this past winter and my doctor ordered rheumatoid and ANA. Rheumatoid was fine, ANA normal at 1:80, which I now understand could count as positive but also still low and ANA not a particularly helpful metric anyway. Since then, the fatigue has reached a level I would call debilitating so I did some research and realised I have a long list of symptoms that could be autoimmune. That in combination with my dad and brothers all having autoimmune/inflammatory conditions means that I think something isn’t right but because a bunch of the symptoms could honestly be chalked up to about a thousand things, including ‘normal’, I’m worried about being dismissed out of hand. Honestly I’m not sure how much longer I can go on like this, so the thought of being shooed away or being told there’s nothing wrong is….terrifying? Demoralising? Crushing? All of the above?

Any advice gratefully received on how to navigate this conversation.

I have an appointment with a new doctor this afternoon, and I’m trying to figure out if rheums will do anything for anemia?

For context, my ANA is >1:1280, but all of the other autoimmune specific labs are negative. My ferritin and iron saturation are in the toilet, and I’ve also got low folate. I have weird facial flushing, painful joints, swollen joints, and a bunch of other symptoms. I have some that I’m pretty sure are iron related - worsening heart palpitations, severe fatigue and exercise intolerance, dizziness.

My immunologist doesn’t know what’s wrong. My last rheum was super dismissive and talked over me repeatedly. I can’t get into a hematologist anytime soon. My cardiologist said to follow up with hematology. My PCP is telehealth and useless with anything complex.

I am starting to feel really sick and just desperate for help.

Not the big stuff.

Just the small thing that never goes away.

My feet are by far the most painful part of my body. Standing causes the most pain. It feels like the bottom of my feet are bruised and it can turn into stabbing and shooting pain the more I’m on my feet. Even resting my feet on the couch is uncomfortable. Wondering if anyone here is experiencing similar pain! I have been seeing a rheumatologist who believes I may have mixed connective tissue disease but isn’t 100% certain. She doesn’t know why my feet hurt so bad. I have raynauds and erythromelalgia, but neither explains the intense pain I get everyday. ANA is 1:1280

Hi everyone 🤍
I’m a uni student working on a small article about living with autoimmune disease, mainly the emotional side of it and how it affects your relationship with your own body over time.

If anyone is okay with sharing, I’d really appreciate hearing your experience.

If you want to include:
- age
- your condition
- how long you’ve had it
- what’s been the hardest part emotionally (not just physically)
- whether it’s changed how you see your body or yourself
- anything you wish people understood

Feel free to answer as much or as little as you want here in the comments 🤍
Thanks a lot to anyone who takes the time.

Hi everyone, male 36 yo here.
My story begins 4 years ago, post covid infection I started having athralgias and pain in my fingers.
I already had Hashimoto, so I began running tests to understand what was happening.
My initial results were ANA+ 1:80 and everything else was negative, except for 1 time positive LAC and borderline SSA-ro60 (1.0 - nv: <1.0)

This has been my only symptom for the last 4 years, while I still were running yearly checks. My ANA increased to 1:160 with homogeneous pattern, then 1:160 but with speckled 6 months ago. LAC was back negative everytime, same for SSA)

Last month I got a flu, or Covid, and I started having pain in my knees, exclusively when moving. They would get red and hot after a long walk too.
Along with this, stiffness and pain in my shoulders, dorsals, arms, elbows areas. Muscles too are quite stiff, like day post workout or when slept in a bad position.

I did run again my usual checks last week, and pretty much nothing changed, except for ana pattern that now has also nucleolar alongside speckled.
Now i’m worried about scleroderma.

ENA screening negative, profile aswell for SSA, SSB, SCL70, CENP, etc (the Classic 6 panel).
In the last 4 years, a round of different rheumas, no one could give me any diagnosis, saying that my isolated positive ana were due to hashimoto.

Now I have new symptoms, but blood tests didn’t change much.
Everything still negative. ESR 2, CRP 0.14. Normal c3, c4, normal CPK and aldolasi.
All other autoimmune panels negative too (checked for rheum factor, CCP, anca, DSDNA)
HLAB27 also negative.

Also MRI on knees came back normal.
Never had any Raynaud, rashes or whatsoever. But I developed Acne Rosacea recently.

Suggestions? I’m kinda lost.

Hello all!

I just moved to the Denver metro area and am working to establish care here. I was diagnosed with UCTD and seronegative RA early last year. My previous rheum wanted to have me evaluated for HEDS based on documented hypermobility and associated injury, and I was also being evaluated for nutcracker syndrome. Reaching out to a new rheum here, they’re letting me know up front that they do not treat or continue to manage patients if diagnosed with EDS. Is this common practice? Should I find a different rheumatologist?

Given how recent the diagnoses were and how quickly it seems things continue to evolve (new and changing symptoms), I’m feeling a little lost having only ever seen the one rheumatologist before. Would love to hear other experiences as I know it’s super common for autoimmune conditions and EDS to co-morbid :)

ETA - the timeline of my move (which was out of my hands) prevented me from getting timely EDS evaluation, so I have not been diagnosed at this time

Hey there! I (23F) finally decided to try and start figuring out my pain and I’ve seen a rheumatologist (first one, didn’t go well) and we did some follow up bloodwork.

I have raised CRP, Positive ANA (1:320) and constant body pain. I’m always tired no matter how much I sleep, GI issues, constant hot flashes / nausea, poor circulation in legs, redness on cheeks that look suspiciously like a butterfly. But I’m negative to the disease specifies antibodies so I’m being told that I can’t have an autoimmune disease at all.

Not looking for a diagnosis here but just wondering if anyone has any recommendations of a next step for this :[

Hi

I have positive ANA 1:320 coarse speckled. I found it out at my previous hospital stay where I was diagnosed with an unspecified myopathy by a neurologist and told I will have further testing done in June. My genetic panel revealed no genetic cause of the myopathy. My autoimmune panel at the time came back negative, but my symptoms have only worsened since then. I experience day-to-day limited mobility, muscle weakness and pain, but during flare-ups I get a fever, extreme fatigue to the point I can't get out of bed, swelling and rashes. The aftermath of the flare-ups causes me worse mobility, weakness and pain. The flare-ups happen weekly at this point.

Is it possible that despite my inital negative panel I might still have an autoimmune disease?

As the question says .