r/Rheumatology

36F

Hi, I’m going to my first rheumatology appointment tomorrow. I had an elevated RA factor and then it remained elevated after recheck a couple weeks later, so I received the referral. I’ve been having chronic stiffness and pain with extreme tiredness.

I don’t know what to expect, but I’m nervous that they won’t take me seriously. I’ve seen horror reviews of doctors just completely blowing people off at the gate and then getting massive bills after minimal communication and zero work up. I’m sure it’s probably irrational and everything has a couple whack-o reviews.

Does anybody have any advice here first appointment. I often struggle describing my symptoms and can’t quite come up with the right words to communicate effectively.

I hope someone can help me.. I have neurological symptoms such as SFN, POTS, Raynauds including almost no saliva. I have had multiple blood panels done and they’re all negative including SSA ANA SSB. My lip biopsy and ultra sound were both negative for sjogrens.

I have no inflammatory markers at all and the only abnormal finding I have found is low neutrophils and low wbc which is not common in seronegative sjogrens. I also took an early sjogrens panel with one positive marker and have had 3 rheums tell me that the test is not accurate. Where should I even go from here ? Is this even sjogrens at this point ? Could it be long covid/ post viral ?

I (29F) have been doing the dance of seeking some sort of diagnosis for my myriad of chronic pain, fatigue, etc. physical issues that increased dramatically 1-2 years ago. Two different PCPs, 6-months of physical therapy, several rheumatology visits, multiple blood tests, ultrasounds of my joints, and X-rays of my knees layer, both rheumatology and primary care say there is “no indication of anything wrong with me”. According to my understanding of my blood results, my sed rate and CRP are elevated, but my rheumatologist insists it is “insignificant”.

So, I got back to my PCP, we go over everything again, and then just end up sort of staring at each other, as she and I both are like ??? My previous PCP suggested perhaps it’s fibro, but my current PCP isn’t so sure. My rheum refused to comment on fibro. So, current PCP asks me what I’d like to do next, and I honestly don’t know. I just keep googling about my symptoms, and sometimes I come up with diagnoses that seem to fall under neurology. The trouble is, my visits with the rheum have been so traumatic through their gaslighting of my experience that I hesitate to even ask my PCP to continue referring me to different specialties, just as it’s hard not to assume I’ll continue to hear the same things anyways.

Has anyone sought a neurologist’s (or speciality other than rheumatologist) opinion for fibro-like symptoms? Any ideas beyond this?

Any advice or insight is appreciated!

Hi,

I'm 16(F) and for the past 3+ years, I've had chronic daily mouth ulcers. 8 months earlier, I lost my ability to play my clarinet and saxophone because anytime I ate or put anything in my mouth in general, I'd bleed - I had to decide between playing and eating. I was in two bands and was living off of smoothies for about 3 months.

It's gotten bad enough I've been going to Shands off and on; I've bounced between 2 different specialists and am off to another pair, and here locally, I only see a dermatologist. My dentist even recognizes me as an extreme oddity. That aside, I feel no doctor I've met with takes me seriously other than my dermatologist; I really need some help. I'm stressing over so many different possibilities and I'm so scared that this might end up so much worse.

It started out when I was younger; I remember at least having canker sores when I was about 8; it was the first time I had ever gotten strep and now I'm super prone to it; after every bout my flares get worse. They popped up every once in a while back then, but over the years, they've gotten persistently worse. I really couldn't tell you when exactly I started having them daily; it's all a huge blur and I never documented it, but I even think it's been closer to 5 years. I wish I could've documented them back then, but my doctors all told me it was normal for a hormonal girl to have canker sores and wrote it off. I'm not trying to throw anyone under the bus, but I know my history is longer than 3 years. I also experience all 3 types of Apothe Ulcers -herpetiform, minor, major. They also appear in my throat and have permanently altered my voice to sound more raspy (I got a scope done though and they said they didn't see any scarring, but my throat looked irritated; I've seen them in the back of my throat before though and have had that same sensation further down.)

I want to take a moment to talk about some other symptoms of mine, other than the extreme mouth ulcers I can get.

I've been experiencing joint pain in the shoulders, hips, knees, ankles, wrists and fingers for YEARS. I started having issues when I was about 9. For some context (not sure if it means anything, as I would've likely been over it by now), I was a competitive swimmer (6-8) as well as a musician (12-present [play flute & etc.]), so maybe that could explain some of it in the wrists and fingers, but my wrists started way before I ever got into music. My shoulders are the worst in comparison to the others. I remember taking a state standardized writing test when I was 11 and crying because there was such a BAD pain in my shoulder out of no where and I was panicking. My shoulders always hurt a little and hurt more with movement since I was 9, and I remember seeing an Orthopedist when I was about 12 for it once. They saw nothing wrong with my shoulder and referred me to rheumatology at Shands, but we never went.

I've had some GI issues for a while now - not necessarily stomach pain, but in my intestines. I have diarrhea about 1-2x days a week, sometimes more and similar with being constipated. Sometimes I feel something "drop" in my intestine and it's painful- it doesn't matter if I have diarrhea or am constipated, it'll happen for both although it's not as common as it was. Not sure if this would fit the category here either, but I also wake up nearly daily with an extreme sore throat - it doesn't matter if I have postnasal drip or not, I will usually have a sore throat (like I have right now). Sometimes it's mild, but right now and often, it's very sore.

I also have been having a dry tongue; I mentioned this to my dentist I saw Tuesday and she immediately downplayed it saying the rest of my mouth looks wet - that's not the point. It's only my tongue that's dry and it's super irritating. Anything I eat/drink leaves a BAD aftertaste in my mouth and I think it started about 6 months ago. Ontop of that, I don't think my tastebuds are growing back properly; I've lost a lot of my taste over the past few years.

Another weird thing related to "dryness" - I have issues crying out of my left eye and have for years. I remember back when I was 9, I had a hard time crying from it unless I was bawling my eyes out. Sometimes, after blinking, my vision also goes blurry, and this can be in either eye or both; it can last from 30s-20min. I also don't sweat unless I'm on my period.

My symptoms cross over multiple areas and I'm an oddity due to my normal bloodwork - everything has come back normal, including the Ig family, vitamins, viral; everything is normal. I feel like no doctor I've been seeing is taking this matter seriously, even though it's clearly affecting my quality of life. The only thing my ulcers have been responsive to is colchicine and I just started about 3-4 weeks ago. I noticed they're smaller than normal and I had a day where I didn't have any - that was the best day I've had in my life.

I'd also like to briefly skim over family history - my paternal uncle died when I was about 9, so I can't ask him personally, but according to everyone, his story is the only one that matches mine. Growing up, he was on a lot of antibiotics for strep and other things. I just question what really was going on - my grandpa has psychosis and told me that before he died he was diagnosed with some kind of disease, but I can't really tell you if that's true or not. His death was very traumatic (he was hit by a train around christmas) and my family cannot decide between murder, suicide or accident because all evidence points in either direction. That aside though, he did have a very similar history to me.

My parents both have had a history of canker sores - my dad gets them all the time (not as much as I do though). His can range between herpetiform and minor ulcers typically, although sometimes he has a major ulcer. His other siblings all have a history with them as well, but the extent, I'm not so sure. My paternal grandfather also has a history of them (he told me to put rubbing alcohol on them multiple times, but I don't take his advice for obvious reasons). He gets minor ones, and his wife also can get them (rarely).

My dad, on an unrelated note, has an occasional episode where he feels like he's going to pass out or have a stroke (it's really scary). Doctors can't do anything for him because he's a stickler about going to the doctor. He's a 42 y/o mechanic though, so maybe that could cause something weird. I just know I should mention that.

My question is, what does this sound the most like? Please, if you have a moment to give a potential answer, I'd really like to know. I'm tired of going to doctors offices (specifically Shands) just to be introduced and be let down. What are the next steps? I'm scheduled for oral medicine and rheumatology but I have no idea when there appointments are. I'm open to more questions if those are needed, I'm just in dire need of help. I'm losing the ability to like my life.

Thank you so much for taking time into reading this and I hope you all have an amazing day!

F, 24, 123 lbs. I've been dealing with a frustrating collection of symptoms for years, and I feel like every time I get something tested, I'm told it's "negative" or normal. My only confirmed diagnosis is **celiac disease**, but I still don't feel like I have an explanation for everything I'm experiencing.

The biggest issue is chronic hand/wrist and joint pain that I've had for \~5 years. It's especially in between my fingers, around my finger joints/knuckles, and wrists. It can feel like pressure, aching, or like my joints are uncomfortable from the inside. Rubbing them gives temporary relief, but typing, using my phone, pressing on things, gripping, moving my fingers, or even petting my dog can make the pain worse.

I've had both X-rays and an MRI of my hands. The only thing they showed was a small amount of degeneration around my thumb, but importantly, no inflammation. So I have pain that feels very joint-related, but imaging isn't showing inflammation that would explain the amount or distribution of pain.

I also experience:

* Painful/heavy periods
* Body/joint aches and feeling generally uncomfortable
* Fatigue and low energy
* Brain fog
* Headaches
* Bloating/digestive symptoms
* Flares where I feel significantly worse for no obvious reason
* Temperature sensitivity

I've had multiple tests done and have been told that apparently everything is negative/normal, but I'm still having symptoms that affect my day-to-day life.

Relevant lab results (all within normal range unless noted):

* CRP (inflammation marker): <1 mg/L and <0.2 mg/L on two separate tests — normal
* Fecal calprotectin (gut inflammation): 33 (ref <173) — normal
* TPO thyroid antibodies: 14 and 1 IU/mL — normal
* TSH: 0.75, Free T4: 1.4, Free T3: 3.5 — all normal
* CBC (WBC, RBC, Hemoglobin, Platelets): all within range
* Ferritin/Iron: 20–29 ng/mL and 110 ug/dL — normal, ferritin on lower end
* Vitamin D: 24.9 ng/mL (insufficient) → improved to 31 ng/mL (optimal) after supplementing
* B12: 560 pg/mL, Homocysteine: 6.2 — normal
* HbA1c: 5.3–5.4%, Glucose: 82–86 mg/dL — normal
* Anti-gliadin IgA: elevated (250, ref 0–157) and Secretory IgA elevated (3198) — consistent with celiac
* Gut zonulin (permeability marker): normal
* DUTCH hormone panel: estrogen/progesterone largely within range; DHEA-S low-end; one cortisol metabolite (b-THF) below range; B6 marker (xanthurenate) elevated, suggesting possible B6 insufficiency

I'm really hoping someone might recognize this combination and tell me what eventually helped them figure it out, what type of specialist they saw, or what tests were actually useful.

Especially interested in hearing from anyone who had chronic hand/finger joint pain + body pain + painful periods + fatigue/headaches and initially had normal or negative testing.

At this point I'm just trying to figure out what direction to go in because I know something is going on, but I don't know what.

Hello. I haven't been diagnosed yet but l'm afraid l have it,I haven't even turned 33 yet. It started 2 months ago with pain in my left hip. I thought maybe l have aggravated my hip dysplasia somehow. But then the pain in my hip started going away and now my left ankle hurts.

My mother started having symptoms in her mid to late 40s so l'm familiar with the disease. She has been undergoing treatment but unfortunately the meds are affecting her liver and she takes frequents breaks from them for this reason.During breaks the symptoms re appear and she spent her 50s with limited mobility. I'm afraid l'll have the same problems only 15 years younger.

Hi community! I don’t typically post. But I’m looking for some encouragement and hope.

I started on enbrel when I was 19. Which immediately helped my ankylosing spondylitis diagnosis after a few years of trying to find why my hips and lower back were in pain. Enbrel was a miracle drug… After about 9 years the efficacy wore off and I was advised to switch to humira. Which was a seamless transition. Another 8-9 years and it’s august 2025 when again the drug I was on, humira, wore off its efficacy. I wasn’t too worried because of my previous experience of another drug working quickly. I thought… oh let’s just switch to a different drug!

My rheumatologist recommended cosyntex. Because of the previously ease of switching to a new drug, I was naive in thinking it was easy to just switch to something and continue with my normal life of hanging with family, hiking, fishing, swimming, etc.

I was on cosyntex and things got worse. Crazy back spasms eventually towards the 2nd month, but was told to hang on for 12 weeks because it may take that long. After reached 12 weeks my doctor switched me to cimzia. Which began helping… but by the 12th weeks was helping around 60-65 maybe 70%. My doctor explained to me that the drug should help get me to 100%. The pain was typically in my hips and SI joint but has grown up my spine to my middle and upper back. On Cimzia I had no hip or lower back pain.

After the 12 week mark on Cimzia and the want to get to 100%, my doctor switched me to rinvoq. I am now on rinvoq into my 6.5 weeks and it’s just as bad as cosyntex… I’m on steroids now to help bridge the gap from 6.5 weeks to 12 weeks because my doctor says i need to wait the full 12 weeks to see if this works. It’s been over a year and I haven’t been able to do anything that I love, let alone put my own socks on, get in and out of a car or bed.

I’m trying my best to stay positive. Im looking back and wondering if I should have stayed on cimzia longer.. to see if it would help the upper back more but now im on rinvoq. I’m looking for help or encouragement or anything.

I’m starting to become depressed. I want to help around the house. It’s difficult because my back spasms have grown worse. I am recently married and this has never been an issue until this past year. My wife is amazing and so supportive. I am hopeful but it’s difficult to see how I could get back to where I was 1 year ago…

my honeymoon is in one month and I’m worried that the trip will be miserable.. (it will be 12 weeks in the middle of my trip).

Has rinvoq eventually helped you? I need some positive feedback or support from the community.

TL:DR

I’m currently having intense lower back spasms that trigger when I try and get in and out of bed, a chair, my car, changing clothes… has anyone dealt with this, steroids are the only thing keeping me moving until Rinvoq hits 12weeks.

EDIT: added the TLDR

But hasn’t formally diagnosed me yet. Said given my blood tests over the last few months and consistent rashes he feels better about prescribing me this after reviewing my latest labs.

Rheumatoid factor (igm) was 16 in March, 12 in July

Ana titer was 1:320

I’ve had massive rash outbreaks consistently since January and my primary doctor initially did the autoimmune panel because her son has RA and had similar rashes. My main question is, is taking this medication actually worth it if I don’t know what I have yet?

My rheum told me to go to the dermatologist if I got a rash for a biopsy but they didn’t want to do one with my latest rash. I’m just so lost, I know I don’t feel right, so any advice or experiences with this would be appreciated 😭😭

I know it is not fit for all approach but I think IgG4 related disease can be diagnosis of some of yours. High levels don't mean you have this disease always, but I think it's worth to check. I have high IgG4 and some symptoms but yet no diagnosis cause I did not do any biopsy. You cam freely tell your advices and experiences!

So, I've had neuropathic symptoms, weird balance stuff, sexual dysfunction, lightheadedness, fluctuating dry eyes, dry mouth, a really high ANA of one to 2,560 twice on lab testing, three mildly elevated SSBs that were positive SSBs, a positive lip biopsy. Two polyclonal gammopathies. I have had my symptoms for two years now. Still no real diagnosis or treatment plan other than take gabapentin if it keeps you up at night. But yeah, waxing and waning balance and like burning symptoms, waxing and waning dry eyes, dry mouth, waxing and waning lightheadedness. Everything else been pretty much normal so far. See, saw two other rheumatologists before, but I moved, couldn't follow up with them, but both of them said they weren't gonna start any immune modulating treatment yet. I recently got the positive lip biopsy. The third one I'm gonna be seeing's probably, I moved now, so that she's gonna be like my home base one. And I have a neuromuscular neurologist now, and her and my PCP are all in that academic medical center. I'm hoping when I see her in September that she'll finally diagnose me and start something, or at least tell me what the fuck's going on, if it all connects. All my other doctors right now are saying they think it's autoimmune. What do y’all think people that have been diagnosed with it, do you think I have Sjogren’s? Schirmers and salivary Flow are normal. They’ve ruled a lot of other stuff out. You know I’ve had MRIs of my entire spine so they don’t think it’s some kind of mechanical spine compression. They’ve done a bunch of metabolic blood work A1c fasting glucose. One rheumatologist did muscle enzymes check for that. They took MRI of my brain and it didn’t show anything. My neurologist thinks I have small fiber neuropathy and likely some mild dysautonomia. I also get little bouts of hives occasionally when I get hot sometimes. I just wanted to get the opinion on this subreddit people who have gone through this too. I seem to be more of a neuro Sjogren’s presentation. I’m a little worried. Hopefully they can diagnose me and treat me in some capacity because I have a very physical job. Luckily for the most part majority of my symptoms have been mild to moderate, and I’ve definitely had days were I feel really bad but usually it’s not awful.