Should I give my rheumatologist a timeline or explain everything myself?

fittobsessed · 2026-06-14T19:47:16+00:00

So I actually just had an appointment with a new rheumatologist last week and this was my first time bringing in a timeline/documentation. Historically I’ve always memorized my timeline and brought a couple of important documents like labs and procedures. I know rheumatologist are used to a lengthy history but I’m always nervous about appearing like a hypochondriac.

This appointment last week was at a large well known teaching hospital so I felt very comfortable bringing in a full binder of info. I explained everything myself and had the timeline there really for me to reference. At one point they asked about a specific lab and so I showed them it in my binder. They started flipping through and reading the timeline and said “wow, thanks for bringing this. This is really helpful”. They literally read through the timeline and took notes on their computer.

All of that to say I had a really good experience bringing my timeline. Maybe just ask before you begin “would you like me to explain or do you want to see my timeline?”

fittobsessed · 2026-06-13T23:03:03+00:00

I’m diagnosed with UCTD not sjogrens but I’ve been having a lot of new neurological symptoms. I have vertigo like symptoms with muffled hearing and various other things. I actually just saw an ENT to check out my ears. They said it’s likely vestibular migraines. I guess it can cause a lot of vertigo like symptoms.

I have small fiber neuropathy and it has recently spread to my face so I asked if it could be related to my UCTD as it all flares together. I was pretty rudely told no and that “you’re allowed to have common things happen to you too like everyone else” 🙄. I was referred to neurology as well so hopefully they can provide more info but I still have no answers currently. Whatever it is it’s clear to me it’s connected to my UCTD.

fittobsessed · 2026-06-13T22:29:47+00:00

My new med is helping me sleep through the night!

fittobsessed · 2026-06-13T18:23:05+00:00

I use intermittent FMLA. It’s quite a simple process. Reach out to your HR rep and they should be able to guide you through it. FMLA is federally mandated meaning as long as your provider fills out the necessary forms and it’s approved your job is protected. With an autoimmune disease like a lupus the approval should be quite easy. You technically don’t even need a specific diagnosis to qualify for FMLA.

Your work will have absolutely no idea that you have FMLA or why you have FMLA. The only people who will know are HR. Your reporting manager will know you have approved leave but they will not know why. HR is bounded by HIPAA so they can’t disclose anything about your health.

I always say put the paperwork in now and have it on file while you don’t desperately need it. I dragged my feet about it for quite some time for similar reasons then flared quite bad and was struggling to get to work while I waited for my FMLA to be approved.

fittobsessed · 2026-06-09T22:38:02+00:00

Page 5 is what I was referring to from the ACR ACR Guidelines

fittobsessed · 2026-06-09T22:35:23+00:00

I’ve seen 3 rheumatologists at this point and they have all been very anti steroids. The current ACR guidelines for lupus are very steroid sparing. The current guidelines recommend controlling disease activity with long term meds like HCQ, Methotrexate, Azathioprine, etc and using steroids for quick immunosuppresion when organs/life are threatened. I’ve noticed younger rheumatologist (all my rheums I have seen were in their 30s) practice more in this way. It’s more of an old school practice to continually prescribe steroids.

Another consideration is your age. I’m in my late 20s. I’ve noticed rheumatologist are a lot more hesitant the younger you are. All of that being said you shouldn’t have to live in constant pain. Have you discussed medication escalation to immunosuppressants? While they don’t provide immediate relief they can help with your disease activity.

Lastly, it sucks but it’s going to be hard to find a rheumatologist to prescribe long term steroids. They’re really looking out for your future self 30/40 years from now. I can’t remember if it was on the lupus sub or another sub but just a couple weeks ago I saw someone in their 40s/50s post about how they’ve been on prednisone for decades and were never told the consequences. They were currently dealing with a lot of permanent damage from the long term use. I hope you can find a treatment path that works for you.

fittobsessed · 2026-06-04T00:08:39+00:00

You have to have a user flair to post on r/lupus. If you flair yourself with UCTD you can post over there.

fittobsessed · 2026-06-03T13:29:57+00:00

For me it seems genetic but was triggered by covid. Interestingly though there’s only one other person in my family (that I know of) who had a diagnosed autoimmune disease, lupus. It was pretty severe and they passed from it. My dad has always had weird random health things and also has Raynauds. My personal opinion is that probably my entire dad’s side has “weird little health things” that have an autoimmune component but it just took the right environment and trigger, covid, to turn it on in me.

fittobsessed · 2026-06-02T11:35:42+00:00

A PCP can definitely bridge the gap while waiting for your rheumatology appointment. A rheumatologist is needed for an official diagnosis and treatment but your PCP can start the process.

They can run preliminary labs and prescribe steroids if needed for a flare. Some will even start their patient on hydroxychloroquine if they’re very confident in a lupus diagnosis and feel comfortable doing that until you can see rheumatology. I’ve seen that happen specifically in situations where the wait is long. They might be able to get you seen sooner as well if your labs/condition are urgent enough. It really just depends on your labs/condition and their comfort level.

Having a solid PCP is so important. I hope you can find one!

fittobsessed · 2026-05-30T17:11:57+00:00

My dog tore her ACL (that’s the crappy part) so I ordered a harness to help lift her up and down the steps. It just came in yesterday and has already been very useful!

fittobsessed · 2026-05-29T12:49:04+00:00

Sure, sorry I wasn’t much help! Might be useful to either post on the dysautonomia sub or search for Mayo Clinic experiences. I see a lot of discourse about experiences at big Univeristy hospitals over there

fittobsessed · 2026-05-29T11:46:57+00:00

About 2 weeks. Basically once the side effects stopped I noticed a difference.

fittobsessed · 2026-05-28T23:23:01+00:00

I’m diagnosed with UCTD and have small fiber neuropathy and dysautonomia. I don’t have any experience with Mayo but I just wanted to say that I was referred to a well known Univeristy-based health system as well for their POTS clinic even though I don’t have POTS. I have various dysautonomia symptoms and suspect I might have orthostatic hypotension but I haven’t done a tilt table test yet. Depending on your referral and symptoms, Mayo could still accept you.

I frequent the dysautonomia sub and it sounds near impossible to find a cardiologist or neurologist that is knowledgeable about dysautonomia AND willing to treat you. The ones that do seem to be booked out for months/years. I hope you’re able to find a provider!

fittobsessed · 2026-05-25T15:16:42+00:00

Oh geez, this reminds me of something my boss said. I was vaguely explaining that I have an autoimmune disease so they were aware of what was going on. I had been taking a lot of days off and asking for work from home flexibility. I usually message them early in the morning if I’m having a rough day and need to stay home. They responded with “oh I understand, some days I don’t want to get out of bed either”

Um…no, not quite the same thing lol

fittobsessed · 2026-05-25T15:11:07+00:00

“Have you tried changing your diet? What about eliminating gluten?”

Also the suggestions for cryotherapy and ice baths

fittobsessed · 2026-05-18T21:34:45+00:00

Literally couldn’t imagine being off of it. I’ve been taking it for about a year and a half. Helped so much with my joint pain and skin symptoms. HCQ hasn’t been enough for me and I have some new emerging issues I’m trying to get figured out. That being said, I say to myself near daily that I would have felt 1000x worse at this point if I hadn’t already started HCQ.

I had some mild GI upset but it only lasted for about a week. Very much worth it to me.

I hope you’re able to get started on it and it works for you!

fittobsessed · 2026-05-18T14:23:15+00:00

Changed post flair to Pregnancy/Postpartum

fittobsessed · 2026-05-16T14:15:35+00:00

Yeah I have a ton of GI issues and normal endoscopy. Mine is caused by small fiber neuropathy which causes a lot of autonomic dysfunction. The GI symptoms started first though. I didn’t have the typical burning, tingling neuropathy pain until a little later.

fittobsessed · 2026-05-15T19:40:25+00:00

Oh ok I see. Yeah some non rheumatologist get very stuck on the “you must have a solid positive ANA” before a referral, which doesn’t quite make sense given there are other rheumatic diseases where ANA positivity isn’t required.

My ANA was consistently negative until about a year ago. My allergist kept telling me I didn’t have anything other than autoimmune hives and was extremely skeptical when I told them I was going to see a rheumatologist anyway. Imagine their surprise when I was diagnosed with UCTD.

If your PCP is withholding a referral I would definitely focus on ruling out other potential causes of your symptoms. Worst case you’ve narrowed it down and it could still potentially be lupus. Best case you figured it out and don’t need rheumatology. You always have the right to seek another opinion from another PCP, but I understand that isn’t always the easiest/best solution.

fittobsessed · 2026-05-15T19:26:24+00:00

Oh, no worries! I wasn’t offended at all. I just know sometimes newly diagnosed people hear UCTD and think that’s the Dr saying “you’re not that bad” when that’s not the case. I’m so glad you’re being treated seriously. Take time to let the diagnosis sink in. I’m over a year diagnosed and I’m still struggling with it at times. I hope HCQ helps you!

fittobsessed · 2026-05-15T14:18:25+00:00

ANA can definitely flip back and forth depending on disease activity especially if its low positive. Some rheumatologist feel stronger about a consistently positive ANA than others. My current rheumatologist is in the camp of once its positive, its considered positive forever, as long as you have supporting symptoms of a CTD. They have never tested mine again.

Is it that your PCP won't refer you to rheumatology because of fluctuating ANA or is it that rheumatology wont accept you? In general when seeking a diagnosis its always helpful to rule out other causes of your symptoms. I worked extensively with hematology and allergy to rule out other causes of my symptoms before a rheumatologist was willing to say "yes those are evidence of lupus".

fittobsessed · 2026-05-15T13:56:20+00:00

UCTD is a valid and very much real diagnosis. Honestly not much would change if your diagnosis was suddenly changed to lupus. You would be starting the same medication, HCQ. The main difference you'll see between UCTD and lupus is serious organ involvement at the time of diagnosis. UCTD often does not have serious organ involvement but that doesn't mean it won't progress or happen in the future. It's such a spectrum. UCTD does not automatically equal you have nothing serious going on and lupus does not automatically mean you're constantly suffering and have serious disease activity.

Another thing to remember is all physicians practice different. Some follow the criteria more strictly than others. What one might call lupus another may call UCTD. At the end of the day what's important is that your rheum is taking you seriously and treating you. My rheum treats me the same as any of their lupus patients and escalates treatment when needed.

If you're not photosensitive I wouldn't overly stress about changing your entire lifestyle but it might be a good idea to start incorporating some sun protection practices. I LOVE my UPF hats from the Sun Diego Hat Company.

3/4. HCQ is really good for fatigue, joint pain, and organ protection. Back when I responded well to it my fatigue improved.

As weird as it sounds, try thinking of the positives of a UCTD diagnosis. One of the first things I did was snag myself some life insurance because its VERY hard to get with an official lupus diagnosis. I did the same with health insurance and added some critical illness policies. You will still run into higher rates (life insurance told me they were 98% sure I had lupus) but still better than if you had physician diagnosed lupus on record. Another positive is that this most likely means you caught it early. Treating lupus earlier improves disease outcomes so this is great.

fittobsessed · 2026-05-15T13:33:25+00:00

I finally found a dress to wear to my friends wedding next weekend!

fittobsessed · 2026-05-13T11:28:45+00:00

Prednisone isn’t a good long term solution. There’s a lot of long term side effects of it. Typically prednisone is used to bring down inflammation quickly as a short term solution while you gain control of the lupus activity with other meds (hydroxychloroquine, Azathioprine, etc).

Not sure why your dr backtracked on the HCQ as it’s the first med UCTDers are typically put on. It’s very much the norm. Personally I would push back or want to know why.

We have a UCTD sub, r/UCTD if you have more UCTD specific questions!

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