r/Autoinflammatory

Many of us have had some misdiagnoses or things that doctor's were concerned it could be before landing on an autoinflammatory diagnosis.

What were yours?

Mine: Lymphoma, Lupus, MCAS, Mixed Connective Tissue Disease, tumor on my adrenal glands, Rheumatoid Arthritis

I have progressively worsening widespread pain and fatigue with features concerning for both an inflammatory/rheumatologic and potentially neurologic process. Musculoskeletal symptoms include severe migrating deep/crushing pain in the midfeet, knees, hands and extremities; recurrent red, warm, swollen feet/toes; significant Achilles pain; pain at multiple tendon-to-bone attachment sites; and increasing stiffness of the hands, fingers, feet, lower back and neck.

I also experience episodes of intense itching followed by severe deep pain, occasional muscle weakness, and intermittent allodynia during severe flares. Associated systemic symptoms include profound fatigue, approximately 25-lb unexplained weight gain, hair thinning, brittle/chipping nails, a progressively changing wrist rash, increased anxiety/depression, and new difficulty focusing my vision.

Most concerning, I previously experienced an acute episode of bilateral lower-extremity sensory and motor loss requiring a 5½-day hospitalization. I am currently significantly functionally impaired and can become severely painful and exhausted simply walking to the bathroom. This morning I also woke up having urinated during sleep and was completely soaked, which is unusual for me.

What were your side effects and why are you on it? I’m deathly afraid of being allergic as I also have MCAS.

-negative ANA -elevated CRP (for years), sedimentary rate, histamine, and tumor necrosis factor, and IL-B leutorkine -negative genetic testing (invitae) Symptoms: -pericarditis after Covid vaccine in 2021 -muscle aches in calves and arms and neck -EXTREME fatigue -insomnia -hot flashes -scalp pain -severe sore throats -bladder/urinary urgency -daily swollen left eye -goopy eyes -daily headache behind left eye & sinus pain -alternating diarrhea and constipation
-painful glands in neck and behind ear -painful tongue bumps “lie bumps” -swollen glands in neck -dizziness -random rashes and rash on my back that lasted 6 months -diagnosed MCAS despite negative tryptase

Any ideas? My rheumatologist says I have some sort of autoinflammatory condition and recommends kineret but I’m scared to do that. Anyone have similar symptoms and a diagnosis? Thanks!

I use ChatGpt A LOT it has been a life changer for organization, tracking and research with such bad brain fog. I have been tracking a current bad flare. I am going to post it along with things that docs have ruled out or are less likely in their eyes.

4-Day Flare Tracker — Looking for Similar Experiences / Ideas
I’ve been dealing with recurrent systemic flares for several years, and I’ve never actually tracked one day-by-day before. This is the first time I’m doing it while the symptoms are happening.
I’m hoping others with unexplained inflammatory/immune-type illnesses might recognize a pattern or have ideas about what I should ask my doctors.
8/14/26 — Day 1
Severe fatigue — sleeping 12–14+ hours, which is very unusual for me
Bad headache
Sinus problems
Significant mood change
Malaise began and has continued throughout the flare
8/15/26 — Day 2
Started waking during the night with blurred vision in one eye
At one point I could barely see out of that eye and noticed an oval-shaped area affecting my vision
Severe large-joint pain — knees, elbows and hips — around 6/10
Belly-button infection started returning
8/16/26 — Day 3
Severe dryness of sinuses, eyes and mouth
Low-grade fever
Sweating started coming back
Strong-smelling night sweats, which I’ve noticed repeatedly during previous flares
Significant neck pain
Continued large-joint pain
Chest tightness and asthma flare
Belly-button infection became increasingly painful
Couldn’t sleep well; sweating, pain and restlessness repeatedly woke me
8/17/26 — Day 4
Only a few hours of fragmented sleep
Heavy night/day sweating — woke up with my pillow completely drenched and smelling strongly
Significant large-joint pain
Pain and burning sensation in my legs
Painful lumps under my arms
Severe sinus symptoms
Malaise continuing
Profound exhaustion/no energy — I was too drained to make dinner
Belly-button infection continuing to worsen
Feeling depressed and completely wiped out
Another recurring pattern I’ve noticed
This isn’t my first episode. I’ve had approximately 6–7 similar belly-button infections during severe flares.
I don’t believe the belly-button infection itself is the primary disease process. I’m very hairy, so I suspect it’s an area where I’m particularly vulnerable when I’m run down. During these episodes I also commonly develop sinus problems or a tooth infection.
During one particularly severe episode I had:
A tooth infection
A very severe belly-button infection that became almost tumor-like
My first-ever episode of genital sores/HPV flare
Pneumonia afterward
My doctor at the time told me my immune system was severely depleted/exhausted and that this contributed to my susceptibility to infections.
Sleep pattern is also extremely repetitive
At the beginning of these flares I can sleep 12+ hours, which is very unlike me.
As the flare progresses, it flips completely:
Severe night sweating wakes me
Then pain/restlessness keeps me awake
Sleep becomes extremely fragmented
During bad flares I’ve gone 24+ hours without sleeping
Heart symptoms
I’ve also had recurrent palpitations and a “racy” feeling. These aren’t brand-new symptoms—I have a history of SVT and suspect illness/stress may trigger my previous problems.
During this period my heart rate has been roughly high 90s to 120 bpm.
I’m already scheduled for a Holter monitor, echocardiogram and nuclear medicine stress test, so hopefully I’ll get some objective information about what’s happening during these episodes.
I’m not looking for a diagnosis from Reddit. I’m mostly looking for people who have experienced a similar repeating systemic flare pattern, particularly the combination of inflammation/joint pain, fevers/sweating, profound fatigue, dryness, sinus/respiratory problems, recurrent infections and the dramatic sleep reversal.
If anyone recognizes something similar or has suggestions for questions/tests I should bring to my specialists, I’d appreciate it.

Conditions/tests that have been negative or considered ruled out
Sarcoidosis
You have been told by your doctors that sarcoidosis was ruled out.
IgG4-related disease
IgG4-related disease was investigated/considered.
You were told it could not be diagnosed, particularly after the PET scan did not show the expected findings.
Important: a negative/nonspecific PET does not by itself prove that every form of IgG4-related disease is impossible. It is more accurate to say your doctors did not establish the diagnosis.
Tuberculosis
QuantiFERON-TB Gold was negative in September 2024.
ANA / lupus screening
You have repeatedly reported negative ANA testing.
This makes classic ANA-associated autoimmune disease less likely, but a negative ANA does not rule out every autoimmune or inflammatory disease.
Lymphoma / malignancy
PET/CT showed small-to-normal-sized lymph nodes in multiple areas without significant metabolic activity.
This was reassuring, but the radiology report still listed inflammatory/granulomatous disease and some low-grade malignancies in the differential.
Your excisional biopsies of the neck and bilateral axillary masses did not actually contain lymph-node tissue. They showed benign mature fibroadipose tissue, blood vessels and nerve bundles.
Flow cytometry was limited/nondiagnostic because of the low-cellularity samples.
Therefore, I would not describe lymphoma as definitively ruled out based on these results alone.
Important things that remain unresolved
Cause of the recurrent systemic inflammatory flares
Cause of persistently/recurrently elevated inflammatory markers
Recurrent fever/sweating episodes
Severe joint pain/inflammation
Recurrent sinus/respiratory problems
Recurrent infections during severe episodes
Recurrent painful underarm masses/lumps
Eye/visual symptoms during flares
Dry eyes, mouth and sinuses
GI symptoms/exocrine pancreatic insufficiency
Hepatomegaly/splenic enlargement history
Neurologic symptoms/brain fog/tingling
The relationship between the flares and recurrent palpitations/SVT
Whether there is an underlying immune-system problem, inflammatory disease, autoinflammatory condition, or another systemic process
Other relevant negative/reassuring findings
Fecal calprotectin was normal.
H. pylori testing was negative.
PET showed no significantly metabolically active lymphadenopathy.
The 2026 RUQ ultrasound showed no acute cholecystitis or biliary obstruction.
Bottom line
The most accurate way to describe the current situation is:
Several specific diseases/tests have been negative or considered unlikely, but there is still no unifying diagnosis explaining the recurrent systemic flares. Some major possibilities have been investigated without definitive answers, and some previous biopsies were nondiagnostic because actual lymph-node tissue was not obtained.

I won't name names, but I was innocently looking for others with my rare mutation on Facebook, including autoinflammatory issues and my gene related sites. I was singled out and told not to "share genetic information" and they cited GDPR laws (sent to everyone in the group) - which is the EU equivelant of HIPPA. I didn't even share personal documents or photos.

How many of you are going on Facebook to share genetic and symptom information?

I corrected them on what the law actually entails (of course two people who have an illness who agree to share their personal info with eachother is not included in the law). They are well aware of those laws.

Just a warning to all of you. After I corrected them, they kicked me off the sites related to my rare mutation. These people run non-profits that supposedly are all about "connecting others" and doing "advocacy work". I beg to differ.

Edit: There is actually a way you can have a voice. Go on Great Nonprofits (or other review sites), and share your voice in a review.

35 M 6’0” 190 lbs former smoker currently on no meds for diagnosis purposes prior service Marine infantry and construction worker . High ANA 1:1280 but seronegative other than the Antiphospholipid antibodies and a one time weak positive NPX2 Dermatomyositis result. Chronically mildly elevated wbc (12-20 with neutrophils high) and CRP of 1.5-5.0. Negative PET, CT’s, and ultrasound of neck lymph nodes. Negative whole genome

My Sister went through the pretty well the same thing for a couple years before passing from sepsis (or potentially a cytokine storm)

Mild to Severe pain in spine, hips, feet, shoulder, ribs, sternum, and collar bone worse when lying down and relieved with moderate activity. Memory and mood changes and constant lethargy.

Been to the Mayo where a periodic fever syndrome was suspected (TRAPS) but genome was negative and was told to follow up with home rheumo and wean off prednisone which I’ve been off for a month.

This has completely wrecked my life and is making it impossible to provide for my young family. After so many negative tests and lack of diagnosis I want to be done trying to get help but I can’t give up for my family’s sake.

If I could just get some opinions on whether or not I should keep trying ir accept that this is just what I have and will feel like forever? I have a beautiful wonderful Wife and 3 young children that count on me and I’m failing them.

Thank you for reading and I’d be happy to provide more details or photos to anyone interested.

Hello! I am diagnosed with CAPs- VUS, I was diagnosed by my genetic doctor and rheumatologist. I saw my rheumatologist for a few years prior and she offered to refer me to NIH at anytime and I forgot to ask for this before she moved states two months ago. I just got in with a new rheumatologist who didn’t give me the greatest impression- I asked about referral to NIH and was told I can self refer. Does anyone know this process and which specific clinic to reach out to? TIA :)

So, I was diagnosed on my 57th birthday with Eosinophilic Esophagitis. It’s my 6th, 7th, 8th? Autoimmune disease, depending on if we’re counting secondary Raynaud’s, depression, migraines (the list most definitely includes Crohn’s, Celiac, Sjögren’s syndrome, oral lichen planus, and lupus). Should I be looking into an NOD 2 issue/Yao’s syndrome or should I just accept the fact that my body is trying to kill me and move on with my life? (Ha.) I’m not sure where to go from here. I have good to great doctors, I live in SoCal but can access Mayo if that’s the right road. Will you tell me what you think? TIA

Attached is the official FDA recall of Tyenne due to presence of glass particles in some vials.

I've been diagnosed with lphs for nearly 5 years but this past year I've had alot more flair ups (currently in hospital now for pain and sickness management) this is the 3rd time in 12 weeks I've been admitted I'm trying to think if there's any reason I get them or if I do anything that triggers them they seem to be getting worse ithink the pain meds don't work as well now. Has anyone noticed a trigger for them ?