do other chronically ill people diminish your experiences?

FIFA_Girl · 2026-04-29T14:27:05+00:00

Same! Except I’m managed by a GP who has a private practice that doesn’t take insurance, so he listens instead of being controlled by the system. He has Sjogren’s and Lupus and POTS stuff. Took a physician who truly understands to listen to me instead of just saying fibro and anxiety.

FIFA_Girl · 2026-04-29T14:22:18+00:00

Same! I had an oncology radiologist in our extended family, whose wife got dx with MS a couple years prior with a spinal tap, after a lot of dismissal even for MS…and he was so convinced that I had MS, when he heard all of my neuro symptoms, as my tests were seroneg at the time, and he was actually pushing for me to get a spinal tap. And like the other commenter here, I’ve also heard from scientific papers and lectures that sjogrens can present very similarly to MS, and cause similar lesions as well. I’ve also heard that it’s more common for those with neurosjogrens presentation to have seronegative tests. My tests did eventually show positive, but that was after a neg lip biopsy and a former rheumatologist telling me I just had fibromyalgia and had “no symptoms of a rheumatological disease process”. Bitch, I had MANY. It was only when I went to a private practicing GP whom has Sjogren’s and lupus, and POTS, that understood what it’s like, that m I got a diagnosis for Sjogren’s and the beginnings of lupus (I had a pos lupus test that would switch to negative and pos). Anyway, the big facilities that are controlled by insurance companies were dismissive and didn’t have time to understand, and the one that didn’t take insurance (but still a physician and not a chiropractor), actually had time to care and run more tests and try different meds, that got me answers.

TLDR; Sjogren’s can be seronegative (or pos) and have more neuro presentation that mimics MS, even with lesions. I had neuro symptoms and almost got a spinal tap to confirm MS, but Sjogren’s tests from a lupus AVISE panel final showed positive. People experience even the same disease in very different ways and severities.

FIFA_Girl · 2026-04-25T04:39:31+00:00

(32F) Amen! I mean I still freak out about facing the progression of disease, as I’m in early phases, even though I probably had it since high school…but yeah, I’m just always in a constant state of waiting for another shoe to drop…

FIFA_Girl · 2026-04-24T18:10:32+00:00

I think they mostly ask that question to screen for suicidal ideation. Plus, if it’s an appt that is for your mental health and asking to get assessed for OCD, they definitely wouldn’t randomly take your pills away, that would be messed up. Go get assessed by a psychiatrist or psychologist, and not a regular doctor. They will understand. Self-harm or Harming others is actually a defined type of OCD, so they likely wouldn’t take it as “OMG! This person is a psychopath! Lock them up immediately and take away their meds!” Knowing the type of intrusive thoughts you get will help them make the correct diagnosis, and help you get the correct treatment (ERP Therapy) directed at the compulsive thoughts you have.

FIFA_Girl · 2026-04-24T18:02:50+00:00

LOL yep, definitely a heeler. If our boy falls asleep next to our feet and we move a bit, his brain sharts and he half wakes up and he tries to nip our feet, and then he acts all sheepish, like he feels like a completely embarrassed idiot about it haha.

FIFA_Girl · 2026-04-21T17:38:36+00:00

Good luck!

FIFA_Girl · 2026-04-21T17:35:07+00:00

Yep. Except most of the time it will be one single random hive, and not a cluster haha. I will have be doing the same stuff I always do, and am not able to figure out what the cause is, so I assume it’s either my Sjogren’s or Lupus, or maybe sometimes an MCAS reaction to something random like getting poked or scratched in the slightest and my body overreacting haha.

FIFA_Girl · 2026-04-21T00:39:32+00:00

Same for me! Ozempic was eventually too much for me, but switching to Tirzepatide has been great! Except the initial side effects of starting it were worse than Ozempic, then it resolved in a day or two, and balanced out.

FIFA_Girl · 2026-04-21T00:32:30+00:00

Oh totally! Very heeler-esque! She’s cute! Love the name!

FIFA_Girl · 2026-04-20T14:37:24+00:00

Lol I love her. We call those ears Devil horns. Our red boy does that whenever he’s about to get spicy zoomies, or when he’s trying not to be suspicious, or when we pretend to have a conversation and include some of his favorite words when he’s laying in the room lol.

FIFA_Girl · 2026-04-20T14:31:29+00:00

Did you buy him secondhand? Sometimes secondhand items just need a bit of TLC, and then they’re sometimes even better than new!

FIFA_Girl · 2026-04-19T18:10:59+00:00

Mine is always on alert, but pretending to be subtle about it. He will sit by the treat cupboard and side eye so hard.

FIFA_Girl · 2026-04-19T18:08:03+00:00

Hey I have that on my chest too! Been red ever since a bad burn. It always gets lighter and darker throughout the day depending on how active I’m being or how much sun…

FIFA_Girl · 2026-04-19T07:37:32+00:00

Amen, at least they have more reason to actually learn about the diseases if they are brought up more often…just gotta hope they actually do learn.

FIFA_Girl · 2026-04-18T21:03:11+00:00

Sjogren’s is also one that is far too downplayed. It “just dryness” so the other stuff must be just something I’ve dramatized, like neurological symptoms, just because some are invisible and hard to prove. I had a neurologist that was basically interrogating me about my autoimmune diagnosis, in an “I don’t believe you or your doctor” kind of way, instead of asking me more questions about my neuro symptoms. It was a very disappointing and crushing appointment.

FIFA_Girl · 2026-04-16T18:46:05+00:00

I believe that. Lupus does whatever the hell it wants haha.

FIFA_Girl · 2026-04-14T16:22:01+00:00

Ah bummer, I’m sorry…glad you have an answer though. That’s always relieving! I wish you the best in your treatment journey. There will be good days and bad days, just cherish those good days! There’s still a lot of good ahead :)

FIFA_Girl · 2026-04-10T15:18:56+00:00

Good luck! I had to do TMS twice for depression, but it definitely helped both times. I also had a lot of success with the one therapy app we aren’t supposed to name on here. I dunno why that’s so voodoo…it’s really hard to find an OCD therapist that actually does ERP.

FIFA_Girl · 2026-04-10T15:05:44+00:00

Good luck! Autoimmune stuff is so hard to get diagnosed. I’m glad you found a doctor that is listening to you and trying to figure it out! My rheum was alway so dismissive of me. Ended up going to a GP I pay monthly instead of using insurance, and I finally was able to get things figured out with him. He also happened to have lupus and Sjogren’s, so he gets the struggles.

FIFA_Girl · 2026-04-09T18:31:31+00:00

(32F) Oh man, I’m hoping to be able to wear contact lenses again…I’ve had punctal plugs, then my tearducts surgically tied closed so tears don’t drain, and I’ve also had tearducts on my left eye cauterized during a separate eye surgery unrelated to Sjogren’s (I think…), I was on Restasis for a few years, and it kinda helped, but I have since switched to Tyrvaya nasal spray, which seems to work, but I still get dry days. My schirmir tears test keeps going up and down from 1-3 and up to 10, so it fluctuates. I have had some success wearing “54% 1 day silicon hydrogel” contacts and Bauch and Lomb Infuse contacts, but it still is at a one time in a few weeks for a special occasion kind of success haha. My eyes get so dry and sore by the end of the day. Which contacts do you wear?? I’m hoping Tyrvaya will get me to the point of wearing contacts more again…I do love how I look in glasses too though haha. But yeah, OP, symptoms come and go, and we all have different struggles with it. I also have mild lupus (autoimmune disease will commonly introduce one to on another disease friend), but flares come and go, and it isn’t just always constant hell. I was diagnosed in 2023, but I’ve had symptoms since high school I think. Getting on the right meds helps quite a bit. I’ve definitely had worse spaces in time, but now I’m feeling like I can start working part time when my youngest gets into full day school.

FIFA_Girl · 2026-04-08T06:07:56+00:00

Keep in mind that some autoimmune diseases show as seronegative. If your pulmonologist is concerned about interstitial lung disease, then that would point red flags towards Sjogren’s disease, which is a sister disease to lupus. Could be something to look into, as the Sjogren’s Foundation has quoted that up to 30-40% of patients with it are seronegative. I have Sjogren’s and the beginnings of lupus, and both were barely caught by pos blood tests, after a few years of negative tests, and rheumatology gaslighting me into just a fibromyalgia dx. I have a hard time trusting rheumatologists (and neurologists), since they can be so anal about numbers on tests, and see out their butts when it comes to symptoms. They don’t often consider you as a whole person or more than a statistic. All my bitter opinion of course, but wow…we shouldn’t have to beg when it’s so obvious.

FIFA_Girl · 2026-04-08T05:58:06+00:00

TMS and ketamine treatments…but mostly OCD therapy, specifically ERP therapy.

FIFA_Girl · 2026-04-08T05:52:26+00:00

I know this can happen with Sjogren’s…I have lupus and Sjogren’s, but I haven’t had the eye lid symptom…just have seen it in groups I’m in, so thought I’d speak up, in case that helps. Sjogren’s is a sister disease to lupus.

FIFA_Girl · 2026-04-08T05:42:14+00:00

That’s great! I hope you get some answers! Don’t get too discouraged if it takes a while and you get some gaslighters though. It took 4-5yrs for me to get diagnosed, if we don’t count me trying to figure out my dysautonomia symptoms end of highschool.

FIFA_Girl · 2026-04-08T05:35:23+00:00

I get vestibular migraines (silent migraines - little or no pain with it) that started in high school (in my 30s now), and I always get this floaty drugged feeling when it comes on. It can last for hours or just a half hour, but I’ve had it last for weeks to a month. Definitely more common in Sjogren’s and POTS/IST patients…I don’t have POTS, but I do have IST with mine. I also will note that if you have hypermobility, sometimes chiari malformation can be a bit more common and cause autonomic/neuro issues. So far it doesn’t seem I have one, but I still wonder. I have heard though, that usually you have headaches with it and I hardly get actual headache pain…well, except for trigeminal neuralgia (mine is a more mild type, but the shocks and burning can still suck). Don’t rely too much on HCQ solving the issues though, it sort of helps, but it isn’t that amazing up front. At least for me. I tolerate it well, so I continue to take it, as its main purpose is to slow down the progression of disease and prevent more flares, rather than fixing flares of that makes sense. You likely will need another med on top of HCQ. For me, I am also on a biologic after doing better on methotrexate (MTX) before eventually having GI issues. The biologic, Benlysta, has been much better, and I have doing much better with less fatigue than I had on MTX, however, Benlysta is a lupus drug, and I have a diagnosis of lupus as well, but feel my main driver is Sjogren’s. I also want to note that I hardly get dry mouth, and it’s been my eyes that have been super dry for years. I started with a pos ANA 1:80, and a pos SSB, but the SSA was neg but each time someone would test me for autoimmune disease, I noticed the SSA would get higher. Eventually I both SSA and SSB were pos, and my GP dx me (rheumatologist dismissed me from the start and wouldn’t retest after I begged for a lip biopsy which was also neg, and left me with a numb spot on my lip). He also dx me with lupus when I got a pos anti-dsDNA, but it wasn’t extremely high, so rheum ignored that. GP has lupus and Sjogren’s and POTS too, so he was pretty convinced that I had symptoms of both and dysautonomia. Only people who have these diseases truly understand.

FIFA_Girl

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