u/FewOutlandishness495

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