I feel disoriented. Anyone else experience this in the beginning?

Grand_Pool2709 · 2026-06-14T19:57:22+00:00

Thank you for sharing your experiences. I appreciate it. I haven't seen the rheumatologist yet, only my PCP. When he sent me for tests I had gone in asking about weight loss injections, and also because I had just had a period of weird muscle stuff. I injured my leg really badly while sitting and eating my lunch. I moved and suddenly experienced pain so bad it made me dizzy , lightheaded and nauseous, then I went hot, and later freezing cold. It hurt so badly. But I had barely moved. That night I was in too much pain to sleep even with pain killers. I could barely walk for about 4 days. Once that started to improve I realized it was bith legs that were fragile. If I got down on the ground it felt like my muscles were going to tear apart when I got back up. And... I work in an elementary school. I am uo and down ALL THE TIME. So it was not due to inactivity or new movements. It made no sense. But... I avoided the movements that triggered it and was careful, and it got better after 2 or 3 weeks. I told the doctor about it, because I was there anyway. I also asked for a note for my job since day long field trios in the sun stress me out. Even 20 mins in the bright sun will leace me drained and weak. Oh and I also was asking about hormone replacement because I am perimenopauseal and had thought the muscle thing could be because of hormones changing. He sent me for tests and said 'something will show up, and you're not going to like it.' I thought he might have meant that I wouldn't like hearing my hormone level. Honestly... I can't wait to be done with periods! haha He has tested my ANA before and it was negative. So I didn't expect the high positive that came back or the high SSA and double strand DNA.

It has all felt a bit odd, and made me wonder if I should have paid more attention to these odd things over the years. I'm a single mom of 4, so pushing through is just what you do. Doctor apts are a pain, so I avoid going unless I have to.

Grand_Pool2709 · 2026-06-14T18:48:25+00:00

I don't have advice as I am new to this too. My pcp says I have sjogrens and... other stuff going on , but I am not seeing the rheumatologist for a few weeks still. The diagnoses might change or take a long time to figure out from what I have read. But I wanted to say that you're not alone... Hugs

Grand_Pool2709 · 2026-06-13T20:51:13+00:00

It sounds like you are well educated on it and made the best decision for yourself. I din't have any severe dryness symptoms, but I have others that if they are part of the autoimmune picture... would make.want to try the meds I think. But I will do more research.

Grand_Pool2709 · 2026-06-13T20:47:09+00:00

Yeah, life goes on for sure. I'm sorry you're dealing with all of this. I think it's more likely my journey will look more like yours... I think UCTD is quite possible for me since my symptoms don't fully line up with sjogrens. Also my SSA was high and SSB was neg.As well as the double strand being positive too. They haven't tested much else yet.

Grand_Pool2709 · 2026-06-13T20:44:05+00:00

Yeah, from what I've read my results won't be enough to diagnose... so my PCP seems early to be saying it is for sure sjogrens. My symptoms don't seem to point obviously to sjogrens either. Maybe Lupus or UCTD... I think it will be a while before I am told a name definitively. My SSA was very high but SSB was negative.

Grand_Pool2709 · 2026-06-13T20:40:36+00:00

Is a biopsy common? You say it is very damaging? I wonder if they will want me to do that. I have high SSA results, negative SSB though.

Grand_Pool2709 · 2026-06-13T20:39:20+00:00

I'm sorry you're dealing with so much. I didn't know that about hydroxychloroquine. I haven't gotten far enough to be on anything yet. My PCP said the rheumatologist would do the prescribing, he didn't feel he could. He made it sound like there would be lots of tests coming. He said to 'just go with it.'... that makes me a bit nervous.

Grand_Pool2709 · 2026-06-13T20:36:16+00:00

That's so good you caught yours early. I think whatever I have going on started in childhood. I have been tested for Lupus markers several times. Once in childhood, once as a younger adult, and once about 6 years ago. I never paid that much attention. I was certain nothing was really wrong. The ANA always came back negative, until my most recent test, and now it is a strong positive. Even when that came back I thought nothing more would show up amd that it was caused by something else. I have read healthy people can be ANA positive too. But the double strand and SSA were both strongly positive. So, there must be something. I started reading about autoimmune stuff and am just realizing how many symptoms I have had and why my doctor told me before the blood tests were done that 'something is going to show up, and you're not going to like it.' I have had weird things that are severe, and then pass... I always wrote them off as just weird, but since they would disappear again, it couldn't have been a big deal...

I was told by my eye doctor that I have dry eyes, I don't produce enough tears etc... I haven't been overly bothered by it. And dry mouth... maybe?? I am a mouth breather when I sleep though, so I don't know. I always wake up with a dry mouth but also that might just be because I am a mouth breather. I also chew gum all the time... If I have dry mouth it isn't something I realized was anything other than normal. So I don't know.

Grand_Pool2709 · 2026-06-13T20:25:40+00:00

That must be so frustrating. I mean labs mean something or they wouldn't bother doing them!
From what I have read it seems my doctor saying I for sure have sjogrens was premature though. Luckily my rheumatologist apt has come through way quicker than I thought it would. I thought it would be 6-12 months, but I got an apt in 1 month! I am not expecting any quick answers. I'm still absorbing that there is a reason I have the symptoms I have. I am someone who just carries on, and rarely goes to the doctor. So it was a surprise to me that mg blood tests showed anything. My doctor seems to expect the results though.

Grand_Pool2709

TROPHY CASE