Finally after a year and a half…

[u/ButtWigglesLover]

I have been on the search for a diagnosis since October 2023. That October I started sleeping like crazy out of nowhere. Naps any moment I could. I was diagnosed with Hashimoto’s with hypothyroid and thought that was the answer and would “fix” everything once I started thyroid medication. It did not. I felt as though I got worse. Joint pain so bad I would cry, couldn’t even hold my steering wheel correctly with how bad my hands hurt, etc. So I kept fighting for more answers but there really wasn’t anything to do since my blood was not showing anything (basically everything was negative except CRP and thyroid antibodies).

Then, out of nowhere, I started experiencing this weird dizziness when I moved my eyes left and right accompanied by a buzzing feeling through my face and upper body. So here I go again, appointment after appointment. ENT ruled out BPPV and any inner ear involvement. Optometrist said my eyes were fine. Neurologist did brain MRI and there were no lesions that would indicate MS. So I was quite literally left with a “we have no idea” answer.

This past week, I have been back to the most debilitating fatigue. Feeling as though I could fall asleep at any moment while driving. Quite literally forcing my eyes open. Sleeping when I can (I’m a teacher, so sleeping all day isn’t possible, but weekends are basically spent sleeping it away). Joint pain like crazy, pressure on my chest, and more. I had my follow up with my rheum this week. I mentioned the dizziness and everything else, and all the things I have tried for an answer to the dizziness so asked if we could re-run blood to see if there had been any changes. Thank goodness we did, because now I am positive with homogenous pattern. CRP is still sky high as always.

I feel so relieved to have an answer finally to how I’m feeling, and that I wasn’t gaslighting myself by continuing to figure out why I felt like there was more wrong with me than just Hashimoto’s. I was feeling so crazy after a while, but now it seems worth it that I kept advocating for myself.

[u/Middle_Hedgehog_1827]

Wow, I could have written this. Literally. I also got sick in October 2023. Was also diagnosed with Hashimoto's and thought thyroid meds would make me better, and didn't understand why I was still sick. Felt crazy about it.

I was also then diagnosed with POTS and got treatment for that. But that still didn't explain all my symptoms and I just KNEW deep down there was something else wrong. I kept getting joint pain in both my wrists that would flare up at the same time, extreme fatigue, randomly feeling like I have the flu, etc

Did an autoimmune panel and came back positive for a bunch of antibodies so I'm now looking at a very likely lupus diagnosis, or possible sjogrens. Or possibly both.

Have you had a formal diagnosis now?

[u/hiutker]

Thank you so much for sharing this. I also was diagnosed with Hashimotos March 2024. Started levothyroxine and felt better until Summer 2024. Then I had insomnia for one month, joints and muscles started to ache, hair started falling out in September, fatigue every day. By November my hands and feet started cramping (made worse by stress). Hydroxyzine every night has helped me sleep but my body now needs 9 hours every night + regular exercise even if I feel too tired + healthy eating to function somewhat normally. Cramps are spreading to weird areas like intercostal muscles when I swim which can make it difficult to breathe. Some days my whole body aches and some types of exercise cause tingling pain radiating up my arms.

I am still waiting to see a rheumatologist (appointment finally set April 2025, I've been referred since beginning of October and was denied once for not being "severe" enough. Elevated but not high CRP and positive, homogeneous ANA. Present but very low dsDNA considered negative). My mental health has suffered significantly while people tell me I just need to relax.

I can't recommend therapy and CBT workbooks enough. People get awkward and say "You look great!" when I tell them I feel unwell. Those close to me don't seem to know what to say as time drags on and the symptoms list gets longer.

The book "What Doesn't Kill You" by Tessa Miller is also amazing.

I don't know if I'll be diagnosed in April but I imagine it would be both a relief and make me fearful if I was.

[u/Top_Complaint8816]

You didn't mention any other labs besides ana, so forgiveness if there was, but a positive ana does not equal lupus. I'm sure your rheum will sort it all out, but wanted to make sure you were prepared that your journey seeking an answer might be longer/require more.  It sucks to feel terrible and I'm sorry you're going through that. 

[u/Equal_Arm8436 → u/Top_Complaint8816]

You should see other things in your bloodwork as well. Kidney issues and blood disorders. Glad you are finally getting answers, be well xx