r/Autoimmune

This message is for the moms with autoimmune disease, who are still navigating the unknown of this terrible health issues, going from one doctor appointment to another, being gaslighted, let down, and who have to keep up at home with the kids and put on a smile on their face to not show too much of your own pain.
How do you do it through all the physical suffering and the lack of hope to ever feel normal again?

I wasn’t sure whether to put venting or advice as the tag, I apologize. My state has a shockingly high amount of measles cases right now. It’s not to the point of crisis for those with working immune systems. But thanks to Humira, I’ve gotten my first ever uti/kidney infection a couple months back. So unfortunately my body now behaves strangely to day-to-day life.
I got the measles vax as a baby, and I’ve been rocking n95s through this. My chest aches now, though and I’m worried I still managed to contract it. I have an appointment tomorrow about the chest pain/chest tickle. If I don’t already have measles, what if I get it from going to the doctor’s office? This is all more nerve wracking than I was prepared for.

I don’t know what to do about these feelings, and I’m not sure if I’m doing enough to stay safe.

I am based in the UK.
I have had a couple of blood tests so far but it seems like nothing has been found. I suspect lupus or ME/CFS or something like that.
I certainly have had alopecia for several years now and I also have sun rashes on very sunny days.
Since I got severely retraumatised early this year, my health has worsened. Could CPTSD trigger other autoimmune diseases? It is very frustrating because I know my body is not normal and I am suffering but GPs and blood tests do not say much. If possible, I need to get a diagnosis so that I can use such a medical record as part of my legal claim. Has anyone been in a similar situation?

What are the biggest issues you deal with when managing or living with an autoimmune condition(s)? Managing labs? Getting Dr to pay attention? Getting help/answers in general? Getting accurate diagnosis? Figuring out what is happening to your body in general?

Mine always surround the Dr experience being shitty and a folder of labs that I have in a manila folder.

I tried searching the sub (and other areas of Reddit) for others, seen a few but nothing crazy and most anything I saw was a pretty outdated post. Reddit’s search function is shit, so maybe there’s more out there already than I was able to find. Just saying that as a little disclaimer to say I’m not lazy or trying to be repetitive if it’s brought up somewhat often. But, I figured since most of what I saw was pretty old now, maybe there was more people in the general community of autoimmune sufferers that have gotten into a clinical trial and have a “review” to share since those posts had been around.

I’m next in line with a local medical facility for a CAR T-Cell trial. My nerves are pretty shot and I’m admittedly pretty fucking scared. It’s been a long time since I last felt truly fearful about something, but after years of failed treatments for Refractory Inclusion Body Myositis… it’s the only semblance of true hope that I’ve ever been given. I’ve been put on every medication for IBM under the sun and been in more doctor’s offices, hospitals, emergency rooms, etc. than anyone should experience in 100 lifetimes. I’ve been at a point of fully accepting a life sentence to a prison within my own body for many years, being told that my only outcome would be declining with alternating rates of acceleration. A lifetime of wasting away. And then this opportunity came along. A chance to turn things around. The first time I’ve had doctors speak to me with hopeful optimism, rather than the sympathetic disappointed tone I’m so used to by now. I don’t want to be too excited about anything, but I also don’t want to be negative about the possibility of a renewed chance at life.

Anyways, sorry for my personal sob story. I really just came around trying to see if anyone could offer any firsthand experience with the treatment, and if so then how it’s going/how it went/how you’re doing now. :)

Wishing you all love, light, blessing, hope, healing and all the other good shit. Wishing for all of the bad shit to leave you all alone. Forever and ever. 🖤 Amen.

So i just got transferred to a rheumatologist because I got a result of positive ANA (1:640) with an autoimmune marker (u1-rsnp positive++, indicative of MCTD).

When I got to my appointment they suddenly mentioned that its normal to have ‘false’ positive markers depending on the lab’s criteria and that they often see people test negative once they test it in there.
The doctor said they will test it in-house again, and mentioned she thinks it might be negative too since my symptoms are all over the place and depending on that it might not really be MCTD or a rheumatology case but a false positive?

I’m just over here confused because as far as I know it’s normal to have it test positive once and then negative again because you might not be in an active autoimmune phase, so of course i wont test positive since im doing good right now? Is this really normal? Does it work like that?

My research says otherwise, though I’m obviously not a doctor so I thought the community might know better. I feel kind of desperate for an actual diagnosis, i want answers and for doctors to stop treating me like a hypochondriac 😭

Ever since I was diagnosed with Hashimoto's in 2014, I've felt terrible pretty much every day. My thyroid labs have been stable for a while, so I suspect some other autoimmune process is happening. The most bothersome symptoms have been fatigue/unrefeshing sleep, neuropathy in hands, feet, and one leg, dry mouth, dry eyes, nausea, feeling like my internal thermostat is off, and a feeling as if I have a fever(but don't).

My PCP has run some tests, ANA twice which has been negative both times, as well ad CH50 and hs CRP which were abnormally high. PCP referred me to rheumatology within the same health system which declined the referral. Any suggestions on whwre to go from here?

32M, trying to understand some recent abnormal autoimmune labs and joint symptoms.
Timeline: In Feb 2026, during Army training, I had feverish symptoms, body aches and severe sore throat and tested positive for Group C strep. I was given amoxicillin but stopped early because of severe bloating. My throat symptoms persisted/recurred. On April 29, I went to the ER and was again diagnosed with strep and given another antibiotic, which I also didn’t complete fully.
About 1–2 weeks after the strep infection, I developed progressive stiffness/aches in my fingers, elbows and other joints, especially morning finger stiffness. I’ve never had visible joint swelling, redness or warmth. Symptoms fluctuated and improved dramatically with prednisone 15 mg for 2 weeks. Some mild stiffness returned after stopping.
I currently run 1.5–3+ miles, train college soccer, sprint and lift weights without joint pain/discomfort. I’ve also had some knee popping with minimal discomfort.
I briefly had a smooth red spot on my neck/chest that lasted only ~2 days, wasn’t itchy/painful, and completely disappeared. I’m not sure it was autoimmune. My fingers sometimes become pale/white in the cold, possibly Raynaud’s.
Labs
Positive:
ANA ≥1:1280, speckled
RF 75
Sm/RNP >8.0
Negative/normal:
dsDNA 1
CCP <16
C3 121
C4 17
SSA/SSB negative
Scl-70 negative
Centromere B negative
ESR 11
CRP <3
Creatinine 0.96 / eGFR 108
CBC essentially normal
Hep B and Lyme negative
No kidney problems or other known organ involvement.
The first rheumatologist I saw had never seen me before and mainly reviewed my bloodwork, didn’t really examine my joints, and told me I have lupus. He prescribed Plaquenil (hydroxychloroquine) and prednisone.
Another rheumatologist was more cautious and said she wouldn’t diagnose lupus with 100% certainty and that UCTD is possible.
I’m especially wondering about the post-streptococcal possibility because my joint symptoms started only ~1–2 weeks after recurrent/incompletely treated Group C strep.
Could this be UCTD, early/mild lupus, MCTD/RNP-related disease, post-streptococcal/post-infectious arthritis, or something else entirely?
I’m not asking anyone to diagnose me—just curious how others would interpret this combination of strong antibodies but relatively few clinical symptoms, especially with the strep timeline.

High ANA + Sm/RNP, but very few symptoms — lupus, UCTD, or post-strep?

I know autoinmune diseases are complex and exhausting to deal with and sometimes we wish we could go back to what things where. In my case I was depressed, unhappy and all the time trying to be someone I'm not. Wanted to achieve things quickly and didn't thought much trough them. Couldn't rest. Then severe burnout hitted and then this diagnosis. Is hard for me to think my life again, from scratch almost. Under any circumstance I want to go back yo who I was. I feel alone and uncertain, I'm affraid.

In July of 2024 I had a positive ANA of 1:320 nucleolar pattern. I had an AVISE panel done, which was negative for any autoimmune antibodies. At the time, I also had a ferritin level of 10 which my doctor thought could be causing the headaches, joint pain, fatigue, and heart palps.

My ANA has been monitored, it has fluctuated all over the place even going back to negative. In June of this year, I saw a rhematologist and got the work up again. Everything came back negative. She said she was stumped.

Celiac disease, crohns disease, thyroid disorders and psoriasis run in the family. I do get psoriasis on my head, and I hate to admit this but also in the bum crack. So embarrassing. My father has extreme psoriasis all over his body. I have literally had every test in the books. I did find out yesterday I am allergic to potatoes (damnit)...so obviously thats going to cause an immune response in my body but other then that who knows!

My Mum has been dealing with an undiagnosed autoimmune condition for a while now. After a lot of testing, the best answer she's gotten is "undifferentiated autoimmune disease" - basically, her body is attacking itself but no on knows why.

Just as difficult as the health issues have been all of the appointments and lack of clarity. She's seen multiple specialists, and none of them talk to each other. I feel like each appointment is groundhog day - explaining her whole history again, trying to remember which labs were run when, which meds she's tried, what helped and what didn't. It's exhausting on top of already not feeling well.

She's in a slightly better place now - she's figured out some things that help her body specifically, and the flares aren't as severe. But it took a long time, mostly through personal trial and error, and I can't help but think some of that could've gone faster with better information in hand.

Curious if this is common for others here:

• Have you dealt with specialists not communicating with each other, or having to re-explain your whole history at every appointment?
• Did you find any way to keep track of everything (symptoms, labs, meds, what worked) that actually helped, either for yourself or for sharing with a new doctor?
• If you were never formally diagnosed with something specific, how did you and your doctors navigate treatment without a clear label?

Just trying to understand if what we went through is a shared experience and what we can do as this is an ongoing journey. BTW - this isn't a knock on the doctors, but the system clearly isn't coordinating or working for us. Thanks in advance for any guidance.

Posting this here cus I know most of you are probably In the same boat and I’m desperate for a remedy. I drink energy drinks at work and eat caffeine cubes, I sleep a lot, I even did the b12 shots for a while but found that they made 0 difference. Has anything really worked for anyone to not feel like a zombie??

EDIT: please stop suggesting medical amphetamines lol I do not live in America

For a long time I blamed my brain fog symptoms on work stress, general life stress, and not sleeping enough. Lately though it feels harder to brush off. Forgetting entire conversations, losing my train of thought in the middle of meetings, and re reading the same paragraph over and over.

I'm not looking for anyone here to diagnose me. I'm more curious about other people's experiences with deciding when symptoms were worth bringing up with a doctor. If you dealt with brain fog before getting an autoimmune diagnosis, what made you decide to get it checked out?

I am 21F. My GP got me blood tests because I complained about joint pain and my mom has an autoimmune disorder. My ANA was slightly positive and so was CRP. The test for ANA did not have a titer and i expected to be tested for that at the appointment. I also had a negative RF but when tested for IGA, IGG, and IGM the IGA was 15 units (normal under 6). From my research IGA is the least specific RF and could be because of my elevated liver enzymes. But we went over my history, and she determined she wouldnt test me for anything because she didn’t believe i had an autoimmune disease. She did determine that I am hyper-mobile and then sent me for hip xrays for abnormalities. the whole appointment took less than 30 minutes, X-ray included. She said she normally sees older people and did explain her reasoning i just dont feel right about how quick it went. If this is normal I’ll take it as such. I just feel a little dismissed. She had such good reviews on her profile, too.

Edit: I want to clarify she determined my positive ANA was a false positive.

I wasn't sure which flair would be appropriate but I feel the need need to share this information.

I have MS and endometriosis. I have recently found out that SO MANY MS and Endo symptoms overlap. Sciatica, drop foot, chronic fatigue, nerve pain, numbness, itchiness, brain fog are all symptoms I have that are symptoms of both MS and Endo. I had no clue! So now the only symptom I have that I know is 100% MS is optic neuritis (idk if I spelled that right but you know, the eye problem). Which is absolutely mind blowing to me. I was dx with ms 12 years ago at 14 years old and so I always assumed all of these symptoms were MS, but nope! I've had crazy bad issues with hormones/periods and the "standard/normal" Endometriosis symptoms since I was 12, right around the same time all the other symptoms started. I know many people with Endo also have an autoimmune condition but because I was diagnosed with MS so young it really feels like a chicken and the egg situation with these diseases, I don't know which came first or what caused what!

Anyways I hope this info can be somewhat helpful or at least be interesting to someone!

Does anyone else take this and did you see results relatively quickly? I’m dx with psoriatic arthritis along with a neuroinflammatory disease (MOGAD) and hashimotos. At first I was managing on cellcept, taltz and ivig. I have had this upper trap/shoulder pain for years. I thought it must be mechanical since it didn’t go away with Taltz like the SI joint pain did. Until the MOGAD relapsed and I spent five days getting 1,000 mg of prednisone in an IV and the pain disappeared. Neuroimmunology said he’d seen great success with rinvoq off label and had rheumatology switch out my taltz for rinvoq and stopped the cellcept. it’s only been about two weeks but over the last couple days i’ve noticed so much improvement in my upperspine/shoulders. i’m not sure if it’s placebo or if this med really can help this fast? cellcept took ages- although taltz was quick for SI joints too

So I’ve only posted once before and appreciated all the advice! I got a second opinion like everyone suggested, which I’m so grateful for! Since getting a second opinion I’m feeling seen but also confused. For background I am 22F with a lot of overlapping health conditions. I have tons of stuff and feel like things are only getting worse. Last time I posted it was about my previous rheum and my results and the treatment I received.I had gotten a second opinion about 5 weeks after my previous appt and this rheum agreed my previous labs weren’t great. He got some more labs done just 6 weeks after my last and everything dramatically jumped. I went from a titer of 1:320- 1:1280. I started out with just concerns of connective tissue autoimmune/ lupus and only testing positive for chromatin antibodies to now also having high anti TPO antibodies. I had also had elevated IgG4 and it’s only going higher. Almost all of my immunoglobulins are elevated and higher the second set of labs. My c4 has been consistently borderline low which is also weird. Amongst all the other blood work I tested positive for the rheum was feeling more confused as my situation looks more complicated and overlapping. I saw this doctor when visiting family out of state so he was understanding and helpful and gave me a diagnosis of UCTD just to get my foot into the door and get a new rheum back home. I now have a new amazing rheum back home and I’m getting my third set of labs done including the avise test. I dont really know anyone who has gone through this before and I’m trying to figure this out on my own. I was wondering if anyone has had a similar situation or has also tested positive for multiple things at once and what that looked like. Any advice and experiences would be much appreciated!
Sorry for the shortened summary if you need more info lmk!
Thank you!!

How have you been able to lower inflammation? I’ve heard that there’s no better way than diet and exercise, but are there any other ways you have lowered inflammation and autoimmune responses by doing ‘XYZ’? I’m sick of feeling sick all the time.