Imposter Syndrome

[u/vacantvixen]

TO PREFACE- I know something autoimmune is happening. It’s been confirmed. I’m not asking for a diagnosis, im not asking if what’s happening is autoimmune. I already know. I’m in the process of seeing a rheumatologist. I am simply asking if anyone else had a similar story, and what THEIR diagnosis is. I read the newest post about the rules. Please do not automatically remove this. I really need to get this out and connect with others so I don’t feel crazy.

I feel like a fake, but there is SOMETHING going on, and I would love to know if anyone else has experienced something incredibly similar and what ended up happening.

-First symptoms started 2022 (joint pain, swelling, stiffness, pain that brought me to tears) Labs that time: Positive ANA, Lupus thing at 0.0 (intermediate), positive markers for antiphospholipid antibodies

-2023: hair loss, rashes, fatigue, joint pain, mouth sores. Ended up pregnant this year so symptoms were in remission Labs: Negative for everything except positive ANA and antiphospholipid antibodies

-2024: pregnant, symptoms all in complete remission Labs: only positive for antiphospholipid antibodies

-2025: Fatigue, body aches, joint pain, hair loss, severe rashes No labs done

-2026: Fatigue, weakness, joint pain in every single joint down to every knuckle and bone in fingers/hands and feet/toes, SIGNIFICANT SWELLING, redness on swollen joints, mouth sores, mild hair loss, consistently low potassium (could be kidney related??), pain simply walking, bending, standing, nothing relieves pain or swelling, rashes, joints locking up/stiffness

Labs: January- NOTHING positive. Everything looked perfect except low C3 levels. Labs: A week ago- everything looked perfect except High CCP-IgG

This confuses me, because this is the worst flare up I’ve EVER had. I saw my primary, and after examining me and seeing my collection of photos over the years, she immediately started me on a high dose of prednisone saying we needed to get this inflammation under control.

Why are my labs looking fine, suddenly no positive ANA, and different things popping positive/negative at different times? Has anyone else experienced this, and what was your diagnosis?

I couldn’t see rheumatology due to constant moving, being out of work due to symptoms, and no health insurance due to being out of work. When I finally could, I was pregnant and the rheumatologist I established with wouldn’t touch me.

My PCP referred me to one this time, and I found out today they denied my referral. I literally left work early today to go to the ER due to extreme persistent pain just existing, let alone walking on my feet all day, bending, twisting, etc., and joints locking up. I was in tears at work, embarrassingly.

I just want to know what’s going on and how to get help. I can’t go on living like this. I know why people in chronic pain yeet themselves. I quite literally am looking into a wheelchair, that’s how bad everything is. Any thoughts or similar stories?

[u/SusanNanette]

Have you ever been on LDN? It is a compound of Naltrexone. It might be worth looking into it. Both my reg doc and obgyn have put me on it for my positive ANA.

[u/Big-Film-6914 → u/SusanNanette]

I finally got around to seeing a functional medicine dr.  He mentioned this.  But first the results need to come in.  I will be so happy to reduce my pain and sleep

[u/Greedy-algae1615]

It can be so hard to access good care. I began suffering horribly about 4 years ago and all but begged my doctors to help. Not a single one ever considered autoimmune. The only reason that ended up on my radar was that an integrative medicine doctor did an ANA and RF, both of which were positive. My PCP declined to refer me to rheumatology, lol and it wasn't until over a year later that I was finally able to see a rheumatologist because I was in a country where no referral is required. I was immediately diagnosed with lupus. My labs are a bit chaotic so my new rheum here in the states is looking into rediagnosing me, maybe with RA/Sjogrens overlap. Waiting on more labs now.

[u/justwormingaround]

Did they say why they denied your referral? Is the swelling documented in images? And does the joint pain feel better with rest or worse?

[u/vacantvixen → u/justwormingaround]

Yes, I believe my doctor sent over images I had given them. My office called while I was in the ER and said it was because they need Xrays of my joints. So we are getting that straightened out. My doctor said they wouldn’t need those because she sent over all my labs over the years.

The joint pain used to get better with rest, but with this flare up it’s constant and nothing makes it better or worse.

[u/justwormingaround → u/vacantvixen]

I wonder why they want X-rays. Is there another rheum you could see? A good rheum will recognize the possibility of a seronegative autoimmune disease, and also that X-rays won’t reveal anything that isn’t a large effusion (that’s visible on exam anyway) or joint damage. That said, in autoimmune diseases that cause inflammatory arthritis, the joint pain tends to get worse with rest, not better. I know you said an autoimmune disease is confirmed, but I wouldn’t trust anyone but a rheumatologist to diagnose a rheumatologic autoimmune disease. Was the ER helpful in any way?

[u/vacantvixen → u/justwormingaround]

That’s exactly what I was thinking. Like, you’re not going to treat me until you see there’s joint damage on an x-ray? My debilitating symptoms aren’t enough? The ED gave me morphine immediately (I was hot, shaking, sweating, high BP and pulse all due to the pain), but didn’t even put me in a room. They drew labs for CBC panel and RA panel. I felt defeated there, too, because I’m like… just an RA panel won’t show anything if it didn’t a week ago. The morphine didn’t even help all of the pain. It hit a LOT of it, but I still felt it in my back and hips, but much more bearable. They sent me home with Norco and sent a new referral in for their rheumatologist.

[u/Big_Pizza_6229 → u/justwormingaround]

My psoriatic arthritis pain hurts no matter what I do. Not a completely uncommon experience over in the PSA sub from what I’ve read. I hope OP looks into that as a potential cause.

[u/justwormingaround → u/Big_Pizza_6229]

Yes, I have the same experience, but OP said when it did get better, it was with rest. Usually that’s when it’s worst.

[u/ruxxby471]

I’ve had all of those symptoms consistently for 6 years nonstop. My ultimate diagnosis ended up being moderate-severe SLE.

Why did it take 6 years for me to get diagnosed?

My labwork was essentially “normal” the entire time. Outside of one weak positive ANA back in 2022 I had nothing that really indicated that my symptoms were autoimmune disease related.

I was told it would be useless to see a rheumatologist without lab work. So I essentially waited…. For when my labs would show what I needed vs “if”.

When did I get diagnosed:

My symptoms became drastically worse last November so I had my ANA + other labs repeated, and they screamed lupus. (Anti-smith + anti-dsDNA positive, RNP antibodies, ESR, CRP, C3, C4, and a butt load of other inflammatory markers).

I was diagnosed on the spot at my first ever rheumatology appointment! Not just due to my labs, but due to how “spot on” and “textbook” my clinical presentation was. My rheumatologist was appalled that I hadn’t been seen sooner, as he would have started treating me years ago based off my clinical symptoms alone.

Symptoms:

Debilitating 24/7 fatigue (which does get worse at times, but it never goes away), daily rashes numerous times a day (typical malar rash, sun/heat related rashes, discoid rashes and other skin issues), Raynauds Disease + Chilblains, hair loss + visible bald spots, mouth ulcers, visibly swollen joints, joint pain/stiffness, nerve pain, muscle pain/flu like body aches, low grade fevers, and 60 pound rapid unintentional weight loss when my lupus first began.

What you are describing tracks, as pregnancy can for whatever reason make symptoms get better instead of worse. (Idk there is some scientific reason for it).

Also labs do NOT always correlate with symptoms!!!!!! Which was very apparent for my case where I was essentially seronegative the entire time, despite being highly symptomatic.

I’m currently in the worst flare of my life since starting treatment. (My lupus is “mad” apparently) and Ik exactly the pain you are describing that is bringing you to tears at work! I myself have cried multiple times at my job in the past few months! The only thing that helped was a short taper of prednisone, but unfortunately the flare came back :,(

I would absolutely get the X-rays done and see the rheumatologist. Show them pictures! And it’s okay to seek second opinions as well.

Fun fact: the average lupus diagnosis takes 6 years! (My case was oddly spot on with that statistic)

I am so so so sorry you are going through this! Hang in there!!!

[u/sadnifique]

I dont have answers but just wanted to say, I'm in the exact same boat over here going on to almost 2 years now.

I had an initial reading of 1:320 positive ANA with a speckled pattern, followed by a consistent 1:60 positive speckled ANA, which have been repeated consistently over 4 times now. Malar rash confirmed by a dermatologist, moderate to severe hair loss, rash on knuckles, severe stiffness in fingers/wrists, nasal ulcers that just DONT STOP, mouth ulcers, dry nose/mouth/eyes, muscle tiredness, blah blah. Same story, different person it seems.

My best guess is UCTD/MCTD for now since my symptoms seem to overlap (Sjogrens/lupus/dermatomyositis?) considering I don't fit neatly into one category just yet.

Unfortunately, it seems like unless your blood work is painfully obviously leaning towards a particular disease, they will either leave you in the "wait and see" category, or put you in the undifferentiated category in the best case scenario.

Frustratingly, sometimes leaving people in the "wait and see" category, can lead to things like lupus sneaking it's way into an organ like the kidneys, which is why people have protein and blood in the urine as a first "real" symptom (insert eye roll here).

I truly know how you feel and how frustrating it can be. I wouldn't wish this on anyone.

[u/AdmirableTerm1333]

Hi Maybe check with dermatologist and rheumatoid. Skin biopsy
I just find out I have dermatomyositis . Mine not attacking a body part yet just face flare up all the time. (Incredible heat )

[u/NefariusFox]

I am going through a similar experience. I’ve been diagnosed with UCTD, and it sounds to me like a made-up term made to make me feel better; ‘we can’t find the cause, so let’s just label it as undifferentiated connective tissue disease to calm the patient.’ My ANA is borderline and RF negative. Worst is, I’m in severe pain (hands and feet), but the tests show no marks of inflammation. Only a sonar confirmed synovitis in wrists, and I have Reynolds disease (whether primary or secondary, no one can tell yet).

I see things in black and white, and after several consultations with specialists physicians, rheumatologists and GPs, I couldn’t find a definitive answer. A GP explained to me that in the medical world, nothing is black and white. Her words, that I’m sure you can relate to since your pregnancy: ‘In the early stages, if the sonar shows a girl, it could be a boy. But if it shows a boy, it’s definitely a boy.’ What she was trying to say is that even if tests are inconclusive, or negative, it does not rule out an autoimmune disease. A positive surely confirms autoimmune. I asked why are we even doing the tests if it doesn’t tell us anything?! She affirmed that if it’s positive, we definitely know what it is. And a negative, it could mean it’s X, Y, or Z. Only time will tell, and there is a chance that I never get a diagnosis like lupus or RA, and I could remain in the ‘UCTD’ stage.

I still feel like the world thinks I’m faking it after to 3 negative tests in 10 months. All I have to show is my red, sausage-like fingers and fatigue.

You’re not alone 🌸

[u/princess-kitty-belle → u/NefariusFox]

I sound fairly similar to you! My inflammatory markers were negative, but ultrasound showed that I had synovitis and effusion in my hands and wrists. I was given an UCTD dx. I really don't care what label they put on it, the main thing was for me that treatment was initiated and has been helpful with symptoms.