u/FewOutlandishness495

So I saw my new rheumatologist for a consult appointment just last week on Thursday. I was so excited and hopeful to get some answers.

For those that don’t know. I have been living with joint pain and muscular pain + spasms for the past 5 years now. Have been diagnosed with POTS which has helped a lot but now seeking further possible diagnosis for ongoing pain and fatigue.

Went because I had signs of scleroderma as according to my blood work. I’d been seeking a fibromyalgia diagnosis for the past couple years but before I go to the clinic and see a specialist my primary doctor wanted to re-run labs.
ANA was higher than usual (still a bit low) at 3.2 and so it automatically went for further testing. Rheumatoid arthritis labs were negative and so were lupus. My ANA 2 Cascade came back “consistent with CREST syndrome” and anticentromere antibodies marked positive at >8.0
Leading to being referred to rheumatology to explore possible scleroderma. Had to wait a month and a half before seeing one for a consult. After chatting for an hour and then feeling around at my joints she came to the prognosis that I most likely do not have a connective tissue condition but would order further labs to get more specifics on numbers. Otherwise it was mostly chalked up to vitamin D issues with fibromyalgia still a possibility, but to mainly just do PT as a line of treatment with my current vitamin D dosing.

I’ve had GI issues and I asked about them because I was concerned about absorption issues which have shown in the past when I had low iron and after a year of it not going up despite supplements I got an iron infusion. It shot up and peaked at 182 back in August of 2023 only to rapidly fall a month after that test to 38. It rose again in April of 2025 after doing more supplementing and now most recently in May of 2026 it is back down to 47.

My vitamin D levels have been low for forever. They’ve never broken past 30. So I’m supplementing again on a prescribed dose of 10,000 UI daily. But I also just have further GI issues I asked my rheumatologist about how to treat my slow working digestive system & she just said to try dieting. Like cutting out gluten to see about celiac disease or cutting out dairy (I know I used to be lactose intolerant but this is not the same.) or cutting out excess fructose. Which is easier said then done when low income, typically I don’t have much of a choice.
She did question if I had been eating enough and I think so— although I only eat 1-2 meals a day but I haven’t had such issues before until recently it seems to have gotten worse

TLDR: Originally seeking fibromyalgia diagnosis (it is still on the table) & saw rheumatologist with primary care thinking possible scleroderma due to blood labs. Rheumatologist disagrees but ordered further blood work to get more specific information. For now chalks up everything to vitamin D deficiency and has recommended just PT through acupuncture & water therapy.

So I saw my new rheumatologist for a consult appointment just last week on Thursday. I was so excited and hopeful to get some answers.

For those that don’t know. I have been living with joint pain and muscular pain + spasms for the past 5 years now. Have been diagnosed with POTS which has helped a lot but now seeking further possible diagnosis for ongoing pain and fatigue.

Went because I had signs of scleroderma as according to my blood work. I’d been seeking a fibromyalgia diagnosis for the past couple years but before I go to the clinic and see a specialist my primary doctor wanted to re-run labs.
ANA was higher than usual (still a bit low) at 3.2 and so it automatically went for further testing. Rheumatoid arthritis labs were negative and so were lupus. My ANA 2 Cascade came back “consistent with CREST syndrome” and anticentromere antibodies marked positive at >8.0
Leading to being referred to rheumatology to explore possible scleroderma. Had to wait a month and a half before seeing one for a consult. After chatting for an hour and then feeling around at my joints she came to the prognosis that I most likely do not have a connective tissue condition but would order further labs to get more specifics on numbers. Otherwise it was mostly chalked up to vitamin D issues with fibromyalgia still a possibility, but to mainly just do PT as a line of treatment with my current vitamin D dosing.

I’ve had GI issues and I asked about them because I was concerned about absorption issues which have shown in the past when I had low iron and after a year of it not going up despite supplements I got an iron infusion. It shot up and peaked at 182 back in August of 2023 only to rapidly fall a month after that test to 38. It rose again in April of 2025 after doing more supplementing and now most recently in May of 2026 it is back down to 47.

My vitamin D levels have been low for forever. They’ve never broken past 30. So I’m supplementing again on a prescribed dose of 10,000 UI daily. But I also just have further GI issues I asked my rheumatologist about how to treat my slow working digestive system & she just said to try dieting. Like cutting out gluten to see about celiac disease or cutting out dairy (I know I used to be lactose intolerant but this is not the same.) or cutting out excess fructose. Which is easier said then done when low income, typically I don’t have much of a choice.
She did question if I had been eating enough and I think so— although I only eat 1-2 meals a day but I haven’t had such issues before until recently it seems to have gotten worse

TLDR: Originally seeking fibromyalgia diagnosis (it is still on the table) & saw rheumatologist with primary care thinking possible scleroderma due to blood labs. Rheumatologist disagrees but ordered further blood work to get more specific information. For now chalks up everything to vitamin D deficiency and has recommended just PT through acupuncture & water therapy.

I am currently STRUGGLING to get my doctor to sign off on a state level disability benefits. She did it once before a couple years ago and it was such a life savor but now all of a sudden she won’t do it because having “inter-muscular” pain isn’t specific enough. So I’m scraping by trying to avoid homelessness while also not being able to work like normal people.

I’ve realized it all started around COVID, it was near the time when I moved that everything just crumbled. I went from a small town that I grew up in to a town that I knew no one all during COVID. Before I used to LOVE riding my bike and going outside and playing with my dog or going swimming. Never was good at bathing routinely though, transitions have always been rough.

Now though I feel like I have no energy and I yearn to have it back. I am at an age where I should be full of life at the peak of my life but I just feel old instead.

I dunno what I have. Seeing Rheumatologist next week. Hoping to get answers. I got Covid back in 2020 and I think that caused something and it’s just been downhill from there. I had an AMAZING year last year, even made it on the college honor roll. This year was rough I got repeatedly sick and was out for a whole month.

Anyways thanks for letting me rant a little 💕💕
Any advice is appreciated

I’m not confirmed with the diagnosis yet. I have to meet with a rheumatologist first. What are some things you’d want people to know? What are some misconceptions? What advice would you have? What products or self treatments do you swear by? (If anyone has a weighted heated blanket I would love if you linked it!)

I want to know everything about everything. I did something similar when I originally thought it to be fibromyalgia.

I feel like my condition barely counts, not much for physical symptoms, but the labs say otherwise.

Thanks for your time! 💕

After having been self-diagnosed with fibromyalgia and telling people I have it and being treated similarly for it.
I’m finally able to say that I *probably* don’t have fibromyalgia after all. I know I’m a fraud!
It’s not completely off the table yet but it’s starting to look like a comorbid that appears similar to fibromyalgia.

Chronically being deficient in vitamin D. Have been for as long as I can remember having first tested my levels. And it just would not come up my doctor said it can’t just be vitamin D deficiency causing me all these issues and they’re right because I also am starting to look like I have an autoimmune disorder.

I originally was tested for RA back 4 years ago and there was a spike in my antibodies but it was so low the nurses basically shrugged it off. I did for sure test negative for the other RA stuff so that was off the table.
Turns out though that antibody spike wasn’t an abnormal coincidence I got tested for that two more times both being abnormal levels. For the first time though I got tested for a couple extra things.

TLDR; I am not officially diagnosed with it yet but lab work showed positive markers for limited scleroderma which causes joint issues and GI problems, so that paired with chronic vitamin D deficiency and it appears like fibromyalgia.

Both limited scleroderma & fibromyalgia have no cure and only treatments.

I hope now with answers I can *finally* feel better.
Even without having fibromyalgia I hope to still be an advocate for you guys 💕

Title says it. Pain management ended up being a dead end. Was asked about rheumatology and honestly debating on pushing to see them again. I had originally visited them once when I suspected having RA but the blood markers were negative and it wasn’t ever brought up again.

Pain management basically said they’d order x-rays of my shoulders, elbows, and knees (I just did one of my knees half a year ago) he also wants me to get an mri of the neck. I already KNOW these won’t show any abnormalities.
He leaves and comes back after a few minutes and tells me that basically I’m chronically deficient in vitamin D and that can cause fibromyalgia like symptoms.
Aka I don’t have fibromyalgia it’s just vitamin D deficiency. I’ve been deficient for well over 4 years and my PCP knows this. I’ve tried to take OTC meds to raise my levels only for it to never go up. He pushes for me to pick OTC 5,000 IU to take.

Ultimately a but of a waste of my time but I’ll do his little dance and jump through the hoops anyways. I’ve messaged my PCP about the vitamin D so we can hopefully work on that. So I’ve come out without meeting the goals I wanted which was address and get the fibromyalgia diagnosis and get disability paperwork for state benefits (not social security).

I do still have an appointment for August with a specialist in from the fibromyalgia clinic so it’s late but hopefully will get me some answers.

Has anyone noticed the issue where you will defeat a group of monsters and you’ll have the little blue icon appear near you to go and capture it but nothing is there and the icon disappears? I thought nothing of it until I reloaded the area and suddenly magically they would appear and I could capture like normal. It’s so small but so annoying especially in a game that’s half capturing the monsterlings.
I tried buying the subscription hoping it would MAYBE solve the problem but it didn’t.

I can record an example if wanted/needed

I have been seeing a lot about the fraud with some proposals to hold those who are guilty of fraud but there is a lack of prevention. To actually stop and prevent fraud before it happens.
It’s been something stewing for a while and on Tuesday I ended up drafting up a policy proposal that I believe could help.

I ended up emailing a few of our state representatives and slightly altered the email front cover message to tailor towards the individual representative
I have not heard a response from anyone.

If anyone has advice I would appreciate it. Even if it’s just a “hey, don’t bother they won’t listen to you”

Thank you