I am in Rheumatology purgatory.
36F | 5’2 | 150 lbs | PNW, USA
I’ve been dealing with a 4-year multi-system mystery: symmetric joint pain in my hands and feet with 2+ hour morning stiffness that improves >90% on prednisone (and relapses with every taper), childhood-onset Raynaud’s, lifelong dermatographism, chronic dry eyes/mouth/skin, recurring swollen lymph nodes with low-grade fevers and night sweats, chronic leg swelling, photosensitive rashes, unexplained petechiae/bruising, and chronic nerve pain/tingling. Again, this has been going on for FOUR years.
This spring things escalated. Chronic hives that lasted days. leaving bruises behind, culminating in an anaphylaxis ER visit in May, which still broke through despite a high dose prednisone burst after the ER.
Through all of this, my ANA, RF, CCP, ESR, and CRP have been normal/negative every single time, which meant years of being bounced between specialists. At one point a previous rheumatologist diagnosed Sjögren’s clinically, then left the practice. No SSA/SSB, no lip biopsy, nothing to back it up.
This week I met with a new rheumatologist. It was night and day. She spent over 90 minutes with me, went through the binder of my records I brought, and actually found things on exam: moderate synovitis in both ankles, puffy fingers, bilateral leg swelling, plus shading leftover from the hives. She said she doesn’t think it’s Sjögren’s. She thinks it’s a “very real, very complex” autoimmune process and mentioned lupus, vasculitis, myositis, and connective tissue disease as possibilities. She ordered a huge workup: AVISE UCTD panel (the send-out lupus/CTD test), complements (C3/C4/CH50), ANCA, cryoglobulins, myositis panel (CK, aldolase, MyoMarker), SPEP, urinalysis for possible kidney involvement, and contrast MRIs of my hand and foot. She also said if everything comes back negative again, the next step is tissue biopsy; skin, lip, muscle, or vessel, because seronegative disease is still disease.
In the meantime, I still feel like shit. I feel like my body has a gigantic “check engine” light on that nobody can understand. I’m in the waiting room / purgatory phase and would love this community’s perspective, opinions, theories… literally anything! Many thanks! 🙏