Hi Ags. In the past 6 months I've developed unrelenting fatigue and flu like symptoms. I have significant body/muscle aches. If I had to pick any joint area I'd pick low back and left hip as getting pretty flared up at times. So I've had these symptoms for the past 6 months and have even had to reduce my work hours to half days (I work as a physical therapist). I am tired, weak and in pain.
As some background, I used to run marathons (done 17 of em) and did an Ironman. I mention that to show my previous tolerance for discomfort and stamina.
So this summer I was tested for ANA titer and had 1:160, speckled pattern. Went to a rheumatologist but tested negative on all the ENA tests.
Some other symptoms: occasional mouth sores, but just little ones. Over the summer I had genital ulcers that the gynecologist said were non infectious and looked autoimmune in nature, cleared up with a steroid cream.
I feel almost certain that this would all mean I have an autoimmune disease of some sort but my rheumatologist hasn't given a diagnosis and said it could be anything from autoimmune disease, fibromyalgia or even like a long term Covid thing. He did start me on hydroxychoroquine which I've been on 5 weeks with no improvement.
Bottom line, I feel like I've been suffering for months and there seems to be nothing helpful. I have a f/u with the rheumatologist next week.
Other than telling him my symptoms, what questions should I be asking? I will ask him if there is any other medicine that could possibly help. My regular doctor put me on celebrex but it does nothing.
I also want to know what a doctor's best guess would be at this point. I don't care if it's lupusI just want them to be straight with me.
This has been very distressing and is affecting my ability to just work and take care of kids. If any of you are physicians or practitioners, please offer any pearls of wisdom you have, I'm in a real pickle.
I thank you very much in advance.

Sounds like a board prompt for Behcet's disease, but a rheumatologist will be able to tell you more definitively vs other autoimmune conditions.

EDIT: Sorry, misread your post, also my autocorrect kept fighting me on Behcet's. And so sorry you're having to deal with this. Hope you get some answers.

My thoughts exactly. Make sure the rheumatologist knows all of the symptoms that you have had. Additionally, autoimmune conditions can be frustrating to figure out, and lab results can sometimes be fairly marginal at first, and only years later will the diagnosis become evident. All the best.

Antinuclear Antibodies (ANA) Test: Results, Positive vs. Negative, Causes (webmd.com)

No advice, but wish you the best. My wife has RA and it is painful to watch.

Thank you all for the replies.
Kool, what do you mean "years"? Does that mean I could have lupus but the antibodies just don't show up on a test for years? (As an example). I've read some conflicting information on the internet but am seeing that it takes a long time to diagnose autoimmune issues. If I have an ANA of 1:160,
I've read that is a high indication of lupus or one of the other autoimmune diseases. I've also read the opposite. My rheumatologist seems unwilling to really make much of a prediction: it could be anything. I'm going to grill him next time. My CRP and sed rate and blood work was fine except for anemia. I don't understand I'm in pain and severe fatigue but nothing is showing up in my bloodwork to show it. (My anemia is mild).

Firstly, I am not a rheumatologist. But I do order those labs all the time looking for a few things that I do treat and sometimes on suspicion of things I don't treat. Rheumatologists don't usually get too worked up about a 1:160 ANA as a general rule. And sometimes it takes waiting to see what other symptoms pop up, how lab work changes with time, etc., before they're able to make a firm diagnosis. Behcet's was also my first thought with your constellation of symptoms. I would just say to make sure the rheumatologist you saw knows about all of the symptoms you wrote in your OP, and if nothing is diagnostic of a specific autoimmune disorder now, but your symptoms persist, retest.

Thank you for the response! I have to remind myself to be patient in this whole thing, it is a work in progress. I will certainly keep my rheumatologist informed of any and every symptom. Thanks again for the insight.

Send the doctor a message telling them you're curious as to whether they think Behcet's is a possibility.
As an aside, one of my audiologists in her mid 50s has lupus and is extremely active. She runs half marathons, never misses work, I had no idea she had it until The COVIDs made getting her meds an issue

I'll do that. Thanks for the encouragement.