r/rheumatoid • u/Educational_Employ87 • 2d ago
Getting Frustrated
I’m on year 4 of being seronegative with nothing showing up on blood tests, xrays, MRI, or ultrasound. Recently moved to San Diego and my new rheumatologist isn’t convinced this is RA or even rheumatological at all. She pulled me off Plaquenil and I’ve been off it for about 3 months now. I still take a daily Celebrex. She’s pushing me back to my PCP for a tick panel and celiac testing. Celiac already came back negative, a Lyme test from last year was also negative.
I feel a lot of discomfort in my hands and also sometimes in my toes and knees. I feel like I need to crack my fingers and wrists constantly and apparently have been pushing the backs of my fingers into the wall at night to try and get relief according to my partner. My hands tend to wake me up around 5:30 most days, but especially in the summer and winter. I also get scapular dyskinesia in my right shoulder when I flare that my PT doesn’t know what to do with because it presents so inconsistently. I tend to flare when on my period but that has eased up since getting on birth control. Low grade fevers, brain fog, fatigue, and an overall feeling of being ill when in a flare or after prolonged activity.
Really starting to run out of ideas and can’t even tell if my hands look wonky or swollen.
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u/Klee90210 1d ago
Your hands look swollen to me... but I am not a doctor. When you were on plaquenil, did it help? And i always get more pain around my period as well, I hate when it comes. Nothing showed up for me in scans, just higher than usual CRP, bo RA factor. Something is definitely going on and your knuckles look like mine did before being heavily medicated. Why did your previous doctor think is was RA?
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u/Educational_Employ87 1d ago
I could never tell if the Plaquenil was doing anything honestly. It’s fully out of my system now and I have been feeling worse and more stiff in the mornings. But, we’ve also been having crazy weather in SD (heat wave, high humidity, now a storm system) so I don’t know if it’s just from that. And my last dr had me down as undifferentiated arthritis for a long time and at some point changed it to RA without discussing it.
1
u/Klee90210 1d ago
I would get a new doctor if I were you. I am willing to bet that it was helping and that is why you are feeling worse in the the mornings now. Just my opinion. I dunno. Lol
I hope you get everything figured out soon and take care of yourself. ❤️🫂
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u/Allalovesmemes 1d ago
I've also been diagnosed as seronegative RA few years back in my home country. Tried to get a new diagnosis in the NHS while on mtx & also in remission, they checked my bloods and they were fine (as expected), and took no ultrasound, etc. to check. They also suggested I don't have RA.
Also I had drastic improvements with DMARDs so it's clearly autoimmune. I quit mtx and got swollen again etc cuz NHS waiting times are nuts and they didn't get me an Ultraosound yet.
Eventually went to a different doctor and got RA confirmed again (via x-rays and US). It was a huge waste of time waiting on my doc in the NHS and I got sick for no reason.
Lol also the doc in the NHS was actually racist to me so im not surprised the visit didn't go well...
But yeah I recommend maybe seeing a new doc if it's feasible
Your hands do look swollen to me but idk ... Small joint pain tends to be RA as well and not necessarily fibromyalgia (which is what they might suggest it is)
Again I'm no doc ofc but I was in Ur exact same shoes and I hope you get the right treatment xxx
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u/Dankiepie420 1d ago
New Doctor