I started having major autoimmune issues a little over a year ago, but they were somewhat manageable. Then in January of this year, my symptoms became chronic and debilitating:
- nerve pain in all extremities
- joint pain in both hands, wrists, elbows, feet, ankles, and knees
- fatigue
- muscle fatigue
- brain fog
- spasticity in hands, feet, and legs
- weakness
- burning and tingling sensations in extremities
- extreme cramps and pain in arches of feet that left me immobile for most days
- joint stiffness

……

All of which has left me unable to work and do pretty much anything outside of my house for the last 10 months... Which, in turn, has made/makes me feel like a burden, useless/worthless, a mooch bc I’m not contributing financially in my relationship.. I feel like I’ve lost my identity and purpose.. my quality of life has gone into the gutter and my mental health has deteriorated bc of it.
On the rare occasion I do socialize, I have nothing to talk about bc my life’s been nothing but 24/7 pain and dr appts… and who wants to hear about that? Plus, it just makes me feel like a Debbie Downer.

Bc of all of the above, the dynamic of my relationship with my boyfriend has consequently morphed into a patient/caregiver one- no intimacy of any kind, no joking, no affection, i feel his attraction to me has diminished, no emotional connection, no quality time, and only conversations that consist of him asking about my pain levels/symptoms and drs appts.

Over the past several months, I’ve expressed my concerns about him developing resentment towards me due to me not working, not doing my fair share around the house, being needy and emotional, and having to back out of plans last minute leaving him to have to go solo and feel guilty for going.

He consistently reassured me that that wouldn’t happen and we’d get through it and be stronger bc of it all. Welp, a few months ago it happened. Everything he’d been bottling up came to the surface during an argument.

Since then, any interaction I have with him is laden with contempt- even when he looks at me I can see it in his eyes- and it’s left me devastated. I don’t know what to do. I hate this undiagnosed monster that’s hijacked my body and is dismantling my life.

Any thoughts, insights, resources, or advice would be greatly appreciated. TIA

Getting a spinal tap soon to confirm presence of anti-GAD 65 antibodies in my csf. I already am very positive in my blood test.

Anyway I got some symptoms but the one that is making me feel most concerned are my hands being weird. This is the newest one. They curled up during the finger tapping test and were not steady at all. Now my entire arm is sore from what I assume are contractions of some sort.

Dr feels confident but waiting on confirmation. What were your early symptoms and/or progression?

It started when i got bitten by a bed bugs, after several days it gotten worse. I couldn’t walk properly and i developed a mild raise lump on my calves area?

This is the picture from day 1 to after 1 week

Then sent my self to the hospital but they didn’t tell me what specifically has causing this, they just gave me meds to reduce inflammation (like steroids)
She said that if it doesn’t go away after meds i need to see a dermatologist.

But it indeed goes away after meds, it just kinda lessen it a little bit and it goes away after a week.

I don’t know if it’s vasculitis or another autoimmune disease or something else.

Hi everyone,

I'm about to start methotrexate, beginning at 10 mg and going up to 15 mg weekly. The timing isn't great: I'm in the middle of my studies and also working, so my days are already pretty full.

What I'm most worried about is the fatigue. I've read a lot about the "methotrexate hangover," and my work and studies depend heavily on reading, concentrating, and absorbing new material.

For those of you who've been on it, especially while studying or doing cognitively demanding work:

Were you able to concentrate on reading and studying while on MTX?

Did it get better after the first few weeks or months?

Did anything help? Any advice?

I'd really appreciate hearing your experiences, good or bad. Thanks!

Hey all, I’m curious of those with an autoimmune condition- how many of you have not been able to get a diagnosis?

Or what if there was a way to help you further get a clearer picture as to what’s causing your symptoms?

I’m just curious to understand what that proportion looks like.

while awaiting my first appointment ….
After several years of always coming down with a secondary illness after the first one (COVID-bronchitis, flu- pneumonia) and then the last year and a half of repeated shingles out breaks (got the vaccination which has made my last 2 milder), my primary recommended bloodwork. This indicated a possible autoimmune condition. I have been referred to a rheumatologist but the appointment is not until April! In the meantime, what can I do to maximize my health and possibly improve how I am feeling (fatigue, brain fog, joint pain).
Thank you in advance for your advice and suggestions.

I have a wide range of symptoms, many of which seem autoimmune-related. So far, I've been diagnosed with ME/CFS, POTS, hidradenitis suppurativa, urticaria, and Raynaud's syndrome, among others.

However, I still haven't found an explanation for my red nose. Possible causes I've considered include rosacea, lupus, erythromelalgia, and Raynaud's, but my ANA blood tests have been normal. The facial flushing episodes started in autumn 2025, although I had a break from them between June and September 2026.

Here's what happens: During these episodes, my entire face feels extremely hot. Sometimes my whole body feels hot as well, even though the redness is limited to my face. Occasionally, I also experience tingling in my nose, but no burning sensation. Interestingly, the redness is usually confined to my nose, with a very distinct border. Sometimes it also affects my upper cheeks. Quite often (though not always), my nose has been ice-cold beforehand, sometimes even bluish. This can be accompanied by a strong sensation of pressure around my nose and sinuses. Possible triggers I've noticed include heat, cold, stress or strong emotions, and infections. I've even experienced an episode during a bout of chills while having a gastrointestinal infection. When these episodes occur, they often happen several times a day, sometimes over extended periods. They tend to be more frequent in the afternoon and evening.

Has anyone experienced anything similar and managed to find an explanation or an effective treatment? I'd be really interested to hear about your experiences.

Hi f25, I was wondering if anyone has had similar symptoms to me. I haven’t been diagnosed and im not looking for a diagnosis from here. I’m just looking into possibilities at the moment as I can’t get a recommendation to see a rheumatologist at the moment since I don’t have ulcers

My symptoms started in early June, around the time I developed what I believe was my first cold sore on my lip. Since then, I’ve been experiencing a variety of symptoms that seem to come and go.

Lips and mouth: Random burning and itching throughout the day, sometimes with red patches on my lips that can last anywhere from a few hours to a day or so. No blisters.
Eyes and nose: Burning and itching in my eyes and eyeballs. And itchy nostrils
Hands: Burning, itching, and occasional aching in my palms and fingers.
Muscle aches: Occasional aching in my thighs.
Genital area: Itching that can last for weeks, go away, and then come back again.
Rashes: Random rashes on my neck and chest, and I’ve also had one on the side of my face.

I had bloodwork done in September, and everything came back negative, including my ANA and that my inflammatory markers were normal. The only abnormalities were low vitamin D and high blood pressure.

Does anyone else have symptoms similar to this?

Quick disclaimer first: I'm not involved with Fate Therapeutics or this trial in any way. I'm a patient who's been reading up on CAR-T and thought this was worth sharing.

What it is

FT819 is a CD19 CAR-T therapy, but unlike most CAR-T it isn't made from your own cells. It's grown from engineered stem cells (iPSCs), so it's "off-the-shelf" and doesn't need weeks of manufacturing per patient. They use CRISPR to insert the CAR into the T-cell receptor gene, which also switches off that receptor. That's meant to make every cell uniform and lower the risk of graft-versus-host disease.

The other big difference is conditioning. Most CAR-T needs fairly heavy chemo beforehand. FT819 is being tested with lighter regimens, and in some patients none at all. Several patients have been treated as outpatients or sent home within a day.

Results so far (early, small numbers)

Five SSc patients enrolled in the Phase 1 basket trial. All four who reached the 3-month mark hit at least an rCRISS-25 response, and one reached rCRISS-100.

Skin scores (mRSS) improved on average in all of them at 3 months.

In lupus, a single dose with no chemo conditioning produced responses in 3 of 3 patients.

No CRS, neurotoxicity or GvHD was reported in the SSc group.

Caveats: these are company-presented conference data, tiny numbers and short follow-up. Not peer reviewed yet.

The trial

NCT06308978, "A Phase 1 Study of FT819 in B-cell Mediated Autoimmune Disease"

Recruiting. Covers SSc, lupus, myositis and ANCA vasculitis

Ages 12 to 70

For moderate-to-severe active disease that hasn't responded to prior treatments (one listing says at least two)

About 18 sites across the US, UK and EU

Contact: [clinicaltrials@fatetherapeutics.com](mailto:clinicaltrials@fatetherapeutics.com) or 858-875-1800

Link: https://clinicaltrials.gov/study/NCT06308978

Talk to your rheumatologist before reaching out. Hope this helps someone.

I recently got switched and I've not been feeling too great since. I am just wondering what others experiences are?

I have crohn's and ankylosing spondilytis. I've been feeling much stiffer than usual and also been more constipated, which is a kind of gastrointestinal flare for me.

I’ve been diagnosed with Bascule syndrome and am following up with vascular soon to start propanol. Has anyone tried this medication and found relief? I’m a pretty active 21F and this condition has turned my life around. After less than two minutes, standing becomes very uncomfortable, and with my job, sitting isn’t an option. Compression socks, antihistamines, increasing my water and salt intake have not helped. It’s been over a year of dealing with this.

Any feedback would be appreciated ❤️

I am looking for positive stories about rituximab please.

I'm sure this has been asked before but I started to search through the sub and became very distressed at stories of side effects etc

I am about to start ritux for seronegative autoimmune encephalitis. I have been on IVIG gamunex for the last 18 months but it is not controlling my symptoms so the neuro is adding ritux.

I am really scared. I'm terrified actually. I'm hearing stories about rituximab causing permanent immunosuppression and brain infections and other risks.

This disease has already hijacked my brain so it would be really wonderful if someone could share some positive stories and/or help me be less scared of this treatment.

Thanks so much in advance.

hello i’m 20F, with a very long history of hereditary autoimmune diseases. My sister is 22F was diagnosed with lupus at my age, although she’s recently been diagnosed with arthritis and connective tissue disease. My grandma has lupus, celiac disease, and arthritis. My mom to my knowledge was diagnosed with MCAS. I’ve been having symptoms since i was 17, and they’ve progressively gotten more intense. Muscle aches and stiffness, joint stiffness and locking that gets worse in the morning and when i sit or stand for too long, fatigue ( i can sleep 12 hours and be exhausted), blood pooling, reoccurring infections, and irritability. My white blood cells, lymphs, and monocytes are all elevated. RF is normal and so is my CRP. Creatine is low and so is my carbon dioxide. I got all these labs back within 2 days. My ANA is taking forever to get back, my grandma and sister said this could be because my ANA was high and they are doing further testing. I’m super nervous because i see how autoimmune diseases cause daily life to be a struggle and seeing my grandma’s lupus is causing myocarditis and inflammation of her lungs as well, causing her to develop a clot, is devastating. Any advice would be helpful, part of me wants a diagnosis so i can finally get the care i need but the other half wants me to be ok and be able to live life like everyone else.

For background 24f here Ive crohns disease alopecia and now igg4 related disease

If anyone who has both crohns and igg 4 related disease how do you manage? Steroids can't be taken long term ruituximab can't be taken when you have crohns

I'm just looking for someone who's navigating similar or multiple autoimmune disorders what do u do In this situation honestly

They've monitored my brain damage over the years to make sure it's not progressing but the memory loss is getting very frustrating. I'm 28 and officially can't remember my childhood anymore 🙃 and the last ten years it's just scattered memories here and there. I found my most recent memory testing (from 2024) and scored in the 1st percentile. So.... at least I am number one at something 😂 my friends and family are starting to get frustrated because apparently I am repeating questions like crazy now. I feel like this is a lesser talked about autoimmune issue. Like it's not even the joint issues or the soreness that are bothering me the most anymore, it's the memory troubles. I'm looking into care farms already so I have a plan in place for when it becomes too bad to function. For now my life is full of checklists, calendars, notes everywhere, taking photos to be able to look back on outings, and doing what I can under such frustrating circumstances. My wedding anniversary is a few days away and I have to keep a note on the homescreen of my phone otherwise I will definitely forget it.

I saw a rheumatologist last year with a variety of hand symptoms (pernio/pain in the skin on the joints). They couldn’t find any specific antibodies and put my on hydroxychloroquine for 3 months which didn’t do anything. Symptoms are basically just red/purple, warm hands that get progressively worse the day. I get pernio in the winter as well. It’s been going on for five years, getting progressively worse. Some tendon issues in another areas like plantar fasciitis that’s been with me for two years. Was negative for RA and it doesn’t really seem like RA because its not the joints that hurt, just the skin on top of the joints. Anybody seen or heard of anything like this? Other than ANA of 1:320 I have low ferritin (16) and low WBC, but the hematologist didn’t know what to do with that.

I have found a way to respond to the well intended question in the title without making the person asking feel helpless.

Either say 'just knowing you are availabile means a lot to me right now'.

Or say (if true obviously) 'Ifeel safe when your around and it's enjoyable when we talk about a topic that is not my illness"

My fiancee died from scleroderma in March and I finally received the results of his autopsy a couple of weeks ago. They didn’t tell me much I didn’t already know. He went into the hospital January 31st with no diagnosis but low oxygen and then died March 13th. It was rapid. The ONLY thing I can think of is that he started feeling bad the summer before after he was bit by a tick. He received testing and treatment for the tick bite the same day he discovered it. Everything was negative but it seemed to go downhill after that. Shortness of breath, tiredness, etc. I’m wondering if someone can give some opinions on this as I am truly at a loss. Thank you!

Hi, all, I’ve had diagnosed Hashimoto disease for about 17 years. Probably had it longer than that. And I’m up to 200 MCG of Levothyroxine per day. I also have pretty significant osteoarthritis and had a LTKR last month. I’m really struggling with extreme fatigue and joint pain and I recognize it could be connected to Hashimoto, but my GP pushed me to do rheumatology, and I did a lot of testing last winter and spring, and I had the test. You would expect to be abnormal for hashimoto the the only test that wasn’t expected to be abnormal with my known conditions was anticn1a and it has been very high on repeated tests, but I’ve been told. I don’t have enough symptoms for any of the conditions associated with that. However, my TSH is just about in the normal range with medication and I have never felt so awful. So much pain and fatigue. My orthopedics sent me back for a second opinion from a different rheumatologist who did not want to disagree with the first one and I’m back to the starting block. How can I best advocate myself without being pushy or seeming like I’m medication seeking, because I’m not. I’m just sick and tired of feeling sick and tired. And the advice is appreciated.

Does anyone get recurring canker sores in the same place every 6-8 weeks? Over the last 3 months I’ve had a big increase in frequency and severity of canker sores. They are so large and severe that I have had to call out of work for several days at a time due to inability to talk due to the pain. I wake up every 1-1.5 hours in the night due to pain, can’t eat, and can only drink water with severe pain through a straw.

Other symptoms: joint pain (no swelling) in right wrist, pain in shoulders/upper back/collarbone, costochondritis, Raynaud’s, migraines, occasional brain fog, frequent dizziness spells.

Referred to a rheumatologist after a positive ANA 1:320 but after not finding anything significant on those labs they said “see you in a year”.

So miserable right now.

TLDR: can you have an autoimmune disease with all normal labs/imaging?

Im literally desperate....

Is there such a thing, or has anybody been diagnosed with an autoimmune disease with all normal labs (seronegative autoimmune)?

So, my antibody/autoimmune/general abs are all normal - like so normal its laughable.

However, after having my last baby 2 years ago my symptoms have gotten significantly worse, with multiple new symptoms popping up.

At first it was flares of severe gluteal and hip pain, migraines, really weird/new intolerances to foods i previously tolerated, and extreme exhaustion (like falling asleep while driving 2 hours after waking up from 8-10 hours of sleep). So basically all subjective and unobservable symptoms, which is why I never went to the MD to have them checked out.

But now, I'm having new symptopms, a lot of which are objective and observable: My fingernails/toenails are separating from my nailbeds, my hair is falling out - both in patches and diffusely. My menstrual cycles are absolutely of control (so much so that they did a uterine biopsy to make sure I didn't have cancer). I'm extremy orthostatic, I have reynauds symptoms in my feet, and now along with the flares of hip/gluteal pain...elbow joint pain. My elbows feel like they are on fire. Oh, and CRUSHING cluster headaches. I'm on the max dose of Aimovig and Nurtec and its not helping at all.

The ony thing that wasn't normal: my liver enzymes were elevated and a CT of my abdomen show fatty liver deposits. I don't drink and eat a pretty healthy diet.

I'm glad that there's "nothing wrong" with me as far as my tests go, but there's no way that all of my symptoms can be normal, right?

I'd appreciate all of the advice/help i can get!

Hello, I might not belong here, but I'll let you decide that.

My disease isnt considered fully autoimmune. Its "immune mediated" but it works almost exactly like an autoimmune disease.

I have Sarcoidiosis.

I have suffered some organ damage from it. My lungs are affected but im not on steroids at the moment (steroidal side effects almost killed my eyes).

And while i have obviously a lot of drama in my body. One thing i can never understand are these weird set of symptoms for which my doctor keeps sending me to a psychiatrist and the psychiatrist keeps giving me anti depressants.

I feel terrible on antidepressants.

So i quit them. I live in a country where its very warm most of the year. Winter is short but brutal.

Whenever winter comes, it's the same issues. When it began at first i was super worried. Only for the psychiatrist to call it "depression". (Im sure its physical).

Every winter i get:

Lightening like nerve zap pain.

Limb aches

Limb weakness

Brain fog

Disassociation from my surroundings (feels terrifying) basically if i havent eaten I lose all concentration power and just keep staring into distance doing and saying nothing. It feels like ive left my body until someone calls me. Its called derealisation? I dont know.

Last year i also got severe plantar fascitis. My doc said its from walking barefeet. Except, it went away with clonazepam. In a month.

But i can't stay on clonazepam. And antidepressants dont do shit.

I've heard its a nervous system thing but i dont understand.

Does everyone have this? Is it just me? How do you deal with it?

Im 25f.

This is just for fun.

I was speaking with an acquaintance literally 10 minutes ago, and we were talking about health conditions, mutations, autoimmune diseases, etc. and I said “Here I am, an actual mutant with ADHD and Celiac, and I can’t move things with my mind or teleport. I just get distracted and shit my pants when I eat spaghetti.”

So what are your mutant superpowers?