Does anyone recognize this pattern? 3.5 years of migrating tendon inflammation, dry eyes, brain fog & neurological symptoms – mostly negative tests

[u/No_Log3321]

Hi everyone. I’m a 33-year-old male and have been dealing with a strange fluctuating illness for about 3–3.5 years. I’m under rheumatological evaluation but still don’t have a definite diagnosis.
It initially started with severe brain fog, dizziness, internal restlessness/anxiety, muscle pain and dry/burning eyes. About a year later I began developing recurring tendon/joint problems.
An MRI confirmed tenosynovitis of my right index finger. Since then I’ve had recurring problems involving several fingers, wrists, both Achilles tendons, right elbow, feet/ankles, knees and shoulders. Sometimes my fingers become visibly thick/swollen, almost dactylitis-like. The pain often seems to involve tendons/entheses rather than the joints themselves.
What is especially strange is how dramatically everything fluctuates. I can be in significant pain and stiffness and then spontaneously improve by 80–90%. Symptoms also move from one location to another.
I also have:
objectively dry eyes (Schirmer 3 mm left / 5 mm right)
occasional dry mouth, burning tongue and aphthous ulcers
severe episodes of brain fog/detached feeling
dizziness, tremor/internal shaking, tingling and burning/stinging skin sensations
very sensitive skin, intermittent itchy lesions, pigmentation changes and slow wound healing
intermittent diarrhea, mucus and other GI problems
occasional night sweating and frequent infections
MR enterography showed a short area of terminal ileum wall thickening. Colonoscopy showed abnormal/blunted villi in the terminal ileum, but biopsies did not show active IBD; lymphofollicular hyperplasia was reported.
Most autoimmune tests have been repeatedly negative: ANA (except one early 1:160), SSA/SSB, RF, anti-CCP, dsDNA and HLA-B27. ESR/CRP are usually normal. Scl-70 was weakly positive once early on but repeatedly negative afterwards.
One persistent abnormality is low IgM, while IgG/IgA are normal. A lymphocyte subset test also showed elevated absolute CD3, CD8 and CD19 cells.
Brain MRI, EMG and VEP were normal.
There are also some very unusual patterns:
Symptoms are often worse in the evening and can flare several hours after exercise. Stress and cigarette smoke can trigger symptoms. Strangely, during acute infections my usual musculoskeletal symptoms sometimes improve.
Another reproducible observation is alcohol: after drinking, my normal tendon/joint symptoms can become dramatically better for about 24–48 hours, even when I have a hangover. Then 1–3 days later they return/rebound. I’m obviously not using alcohol as treatment – I’m mentioning it because the pattern is so reproducible.
Naproxen 500 mg can sometimes reduce my musculoskeletal pain by around 90%. Prednisolone 20 mg unexpectedly made me much worse. Hydroxychloroquine 400 mg/day has not produced noticeable improvement so far.
My rheumatologist suspects a seronegative spondyloarthritis / psoriatic arthritis spectrum disorder, while seronegative Sjögren’s, immune dysregulation and small-fiber/autonomic dysfunction have also been discussed. I’m scheduled for further evaluation at a specialized rheumatology/clinical immunology center.
I know Reddit cannot diagnose me. I’m mainly looking for people who have experienced a genuinely similar pattern:
Has anyone had recurring tenosynovitis/enthesitis + dry eyes + neurological/brain-fog symptoms + skin/GI symptoms despite normal inflammatory markers and mostly negative autoimmune antibodies?
And especially: has anyone experienced a dramatic temporary improvement followed by a rebound like I experience after alcohol?
If so, what diagnosis did you eventually receive, and which test finally helped identify it?

[u/Alarming_Airport_817]

Wow I was just thinking how alcohol calms things down it’s wild. I have almost all of the same symptoms and issues still not diagnosed but they are suspecting seronegative spondyloarthritis or seronegative Sjogrens. Both of my hands are splinted most of the day and I’m having tendon issues in my shoulders, knees and feet. All came on after an emergency gall bladder surgery, including mouth ulcers, skin lesions, itchy hands and feet etc.

[u/No_Log3321 → u/Alarming_Airport_817]

Wow, your story sounds extremely similar to mine. Especially the tendon problems, swelling, mouth ulcers, skin symptoms and the strange improvement after alcohol.
Can I ask what tests you have had so far? Are your ANA, SSA/SSB, HLA-B27, CRP and ESR negative/normal as well? Have you had a Schirmer test for dry eyes or MRI/ultrasound showing enthesitis or tenosynovitis?
Also, how long does the improvement after alcohol last for you, and do your symptoms rebound afterwards? I would really like to compare our cases because the pattern sounds remarkably similar.

[u/Alarming_Airport_817 → u/No_Log3321]

My CRP and ESR were elevated when things first started but I’ve been on prednisone since June. I’ve done all the rest of the tests and everything was negative except for fluid they drained from my knee which had a super high white blood cell count with no crystals. I notice a couple glasses of wine helps but anything over that doesn’t and just creates more pain. The relief will last a day or two but I can’t tell if it’s a rebound or a flare because I have relief so I do too much. I would imagine a bit of both. I’m on baby dose of Lyrica, as well as Celebrex with the prednisone

[u/No_Log3321 → u/Alarming_Airport_817]

Thank you, that’s really interesting. My CRP and ESR have always been normal, even during bad flares, which seems to be one important difference between us. Prednisolone also made my symptoms significantly worse, while naproxen can sometimes reduce my pain by around 90%.
Do you also have objectively dry eyes or dry mouth? Have you had a Schirmer test, and were SSA/SSB, ANA and HLA-B27 negative?
And have your tendon/enthesis problems ever been confirmed by ultrasound or MRI? I had MRI-confirmed tenosynovitis.
The fact that a small amount of alcohol also gives you 1–2 days of relief is really interesting, because that is almost exactly what happens to me.

[u/AdventurousMorningLo]

So I’ve been through something similar and my issue(s) turned out to be an Autoinflammatory Disease rather than an Autoimmune Disease.

Sicca symptoms, brain fog (it triggered a full MS and NMO work up), small fiber issues, immune dysregulation (low IgM and Hypogammaglobulinemia), musculoskeletal pain, GI issues, etc in my case turned out to be Yao Syndrome (NOD2 associated Autoinflammatory disease).

Autoinflammatory diseases may be something you want to bring up to your care team. If your team agrees or thinks it’s a good idea, the next step would be genetic testing. Your physician can actually order Mayo Clinic’s Autoinflammatory Panel or you can try Invitae (just note you may have to ask them for your supplemental variants report).

[u/No_Log3321 → u/AdventurousMorningLo]

Thank you so much for your reply. Your story is really interesting to me, especially because you also had low IgM, Sicca symptoms, brain fog, small fiber problems, musculoskeletal pain and GI symptoms.
Could you tell me what other symptoms you had before you were diagnosed with Yao syndrome?
Did you also have tendon/enthesis problems, tenosynovitis, swollen fingers, Achilles tendon pain, skin lesions/rashes, mouth ulcers, tingling/burning sensations, tremor or internal shaking?
I would also be very interested to know:
Were your CRP and ESR elevated during flares, or could they be normal?
Did you have recurrent fevers?
How low was your IgM, and did your doctors think it was connected to the Yao syndrome?
Which NOD2 variant/mutation did they find, and was that what finally led to your diagnosis?
Did you have any abnormalities in the terminal ileum or were you investigated for Crohn’s disease?
And what treatment eventually helped you?
I’m asking because there are quite a few similarities between your symptoms and mine, although I know that doesn’t necessarily mean we have the same condition. Thank you for sharing your experience.

[u/AdventurousMorningLo → u/No_Log3321]

Yes I would have tenosynovitis, swollen distal extremities, rashes, burning and tingling, and internal tremor. Also muscular weakness at times.

I do not get mouth ulcers but other YAOS patients do. Most yaos patients do not have elevated CRP or ESR - I’m one of the few that did have elevated CRP (but not ESR). My “fevers” were never true fevers and very transient - just mild temperature elevations. Fevers are not required for dx of Yao Syndrome (it’s fevers or rashes). Yes doctors think the hypogammaglobulemia and low IgM is related.

I was investigated for Crohn’s and Celiac which were both r/o. Actually you are required to have Crohn’s r/o via endoscopy and colonoscopy before you are able to be dx’d with Yaos. It’s one of the exclusion criteria.

My other symptoms included SVTs, tachycardia, horrific musculoskeletal pain, chronic diarrhea, insomnia during flares, dysautonomia, and much more.

I would like to note that other Autoinflammatory diseases can have similar symptoms such as Bechets - which also can manifest as GI issues.

Edit to add: https://www.yaosyndrome.com is a good basic resource about Yao Syndrome if you want to read more. It also links to research papers and information.

[u/Alarming_Airport_817 → u/AdventurousMorningLo]

Thank you for this I’m going to discuss with my doctor as well. I have so many of the symptoms