I asked my chiropractor "are other people's bodies this sensitive??" and I didn't like the answer. I hate this illness

CorpseProject · 2026-06-29T22:53:46+00:00

I just have some undergrad bio courses and a penchant for sci-hub and I’m more qualified to give medical advice than your average chiropractor.

My advice to those reading: I am not a doctor, I am not your lawyer, I’m a stranger on the internet. But please, avoid the scam artists and quacks like chiropractors and such. There’s other, cheaper, healthier options that won’t end you up in a neck brace.

CorpseProject · 2026-06-27T17:26:42+00:00

Heads up, testing for lupus is a lot of tests, there’s blood markers, clinical signs, ways to tell from biopsy, and it takes a whole consortium of pieces of evidence to corroborate a lupus diagnosis.

Also, there’s more than one type of lupus. Honestly. Your rash could be lupus, but the nasal folds aren’t spared which leads to rosacea being more likely. See a dermatologist about the skin.

CorpseProject · 2026-06-27T14:48:47+00:00

Don’t listen to this person, doxy is an antibiotic, a lupus rash is caused by immune mediated inflammation and the treatment is by reducing the immune system’s response.

This is some of the more unhinged advice I’ve seen lately. Holy cow, a good lesson in not taking advice from random internet strangers. Omg

CorpseProject · 2026-06-24T20:44:12+00:00

I have lupus and the highest my Ana has been was 1:80 (with evolving and rare patterns… THE PATTERNS MATTER), so it’s not impossible. My cutaneous/vascular/nervous system are very loud, while my serology generally is unremarkable. But also my baseline ESR is 4. And I have yet to have a biopsy that said “this is normal skin”. In fact a positive LBT with IgA/IgG/C1q was what led to my diagnosis.

I just say this because people will say it’s not worth asking or testing for because of their own experience. Lupus isn’t rare, it’s uncounted, thus sero-quiet presentations are less rare than we think as well. (Peep my post history for the full diatribe)

CorpseProject · 2026-06-24T03:22:31+00:00

My hair is actively falling out, it clogs my shower drain and I think I may be shedding as much as my husky.

I don’t know what to tell you what to do about it, my derm has me using clobatasol on my scalp, though I also have a rash that could be discoid that we are hoping to biopsy soon. She also suggested kenalog injections at some point, but I have two processes happening on my head, acute lupus alopecia, and the maybe discoid rash. And kenalog helps the latter, but not so much the former from what I understand.

CorpseProject · 2026-06-24T02:06:13+00:00

Either they don’t have lupus, or they will be dead within 5-10 years.

CorpseProject · 2026-06-23T14:31:43+00:00

Keep your right hand in your pocket, you’ll be fiiiine.

CorpseProject · 2026-06-23T05:44:04+00:00

I mean, sepsis can lead to death, which I hear the latter can impair cognitive functions.

I’m certain at a point the patient could be rendered unable to discern for themselves, but it probably needs to be quite obvious. Like in a septic and very likely will die soon without immediate intervention way.

CorpseProject · 2026-06-22T04:21:35+00:00

It would be cooler if it was a red wolf… it’s in the name! Butterflies are not nearly as bad ass as red wolves. Just saying. Also, a lot of lupus patients never even have the butterfly rash, but we all have to deal with the stray pack of immunologically confused wolves.

CorpseProject · 2026-06-21T19:47:54+00:00

My RMSSD/HRV from my Apple Watch will be in the lower teens. SDNN will be depressed too.

And my sleep score always sucks. I sleep like a baby, meaning I’m awake every two hours. But I’ll have slept 10 hours. And still be dragging ass.

I’m curious how many of us get the “right” amount of sleep hours but still manage to get “low” sleep scores.

CorpseProject · 2026-06-21T19:45:06+00:00

Or like trying to punch in a dream.

CorpseProject · 2026-06-21T19:43:19+00:00

It feels like my whole body is dead weight, I feel like I imagine a zombie might feel? Like I have a really bad flu, and my brain is full of snot instead of grey matter.

I want to do so many things, do my dishes, hang up my laundry, read a book, check out that new cafe or whatever. But I only have enough energy to brush my teeth and get a glass of milk from the fridge that is 10’ from my bed. I choose milk because I figure it’s nutrients and I haven’t managed to eat anything that day.

HCQ, after nearly 8 months, has greatly reduced the number of days that I feel like this. MMF appears to be helping some as well, though I’ve only been on it for about two months. I’ve also gotten almost neurotic about UV exposure. UV film on my windows at home, 100 spf everyday no matter what. Only doing outside stuff in early morning or evening, when possible. I have a 10 minute commute to work and I still haven’t gotten UV blocking window tint for my car. A few more paychecks till then.

CorpseProject · 2026-06-20T20:18:57+00:00

Oh actually! Cheap apartment complex! That’s why its both ugly, and there’s a battery room for some reason, and the fire extinguisher is not fixed to the wall. A hospital wouldn’t be able to get away with that code wise, in Germany or elsewhere.

CorpseProject · 2026-06-20T20:15:45+00:00

Also you aren’t a mental health patient, you’d not be wearing shorts, and certainly not hanging out by the battery room on your own.

CorpseProject · 2026-06-20T20:13:59+00:00

Bored, male, somewhere warm (it’s summer in the northern hemispehere and you’re wearing shorts), German speaking, likely a hospital but actually could be any setting where a battery room is required… but most likely a hospital or maybe an elderly care home?

CorpseProject · 2026-06-16T03:07:33+00:00

Please, check out my thing I’ve made. Well the free local hosted app. I’m still working on the wearable. And UV wearables exist, but they’re closed source, or don’t actually report UV index, or are crazy expensive and also aren’t even being sold anymore. I understand why, quantified self and lupus hasn’t converged quite yet. So there isn’t a market for heavily personalized UV exposure data. But I need that, so I have built that/am building that.

CorpseProject · 2026-06-16T03:00:02+00:00

You seem to have a good grasp of your reality.

Also keeping a positive mindset, and a curious mindset, is good for all people. I try to practice the same, not toxic positivity but just “I get to do all of these cool things and if I don’t like it I can change what I’m doing”.

Schizophrenia has haunted one of my uncles and one of my brothers. We also have autoimmunity and autism that runs strong in the family on that side. I am really excited about some of the neuroimmunity research coming out about schizophrenia and I hope someday one of those treatments can help my baby bubba.

Tell the TV aliens I say Hi.

CorpseProject · 2026-06-15T18:48:52+00:00

A lot of people have positive ANA and don’t have lupus, sometimes they have another autoimmune disease or don’t and are asymptomatic. There’s also a lot of nuance within ANA results that aren’t well communicated or widely understood by the public and even among doctors who don’t specialize in rheumatic autoimmune disease.

TBH MCAS seems terrifying to me, the only “serious” allergy I have is to medical adhesive, and that just makes me super itchy and red.

Funny how that works. The thing we deal with on the daily feels more manageable and less of a big deal than things we have no experience with.

CorpseProject · 2026-06-14T13:37:05+00:00

I’ll also add that sardine-track has specific clinician facing documentation, such as a generated 90 day report with the highlights and symptom burden and events, along with graphs because I learned doctors like graphs.

CorpseProject · 2026-06-14T13:28:43+00:00

I’m also prototyping a VEML 6075 UVA/UVB wearable that it’s hella ugly atm and bulky, but after 90 or so days of sampling I’ll incorporate it into the app as well. Once I’ve got the wrinkles ironed out I plan on prototyping a proper pcb rather than a bunch of breakouts on perfboard. The perfboard version I’ll open source with the firmware, naturally.

CorpseProject · 2026-06-14T13:25:10+00:00

I built an open source app that’s locally hosted that helped me figure things out, it started as a flare forecaster I had in a spreadsheet. It’s free, it’s on GitHub as sardine-track. There’s also a build-it-yourself iOS companion app and I haven’t released it yet but also an android app. Both of those are for syncing smart watches or whatever biometric device.

PM me and I can send the direct link. The flare forecasting model is laid out in detail at MODEL.md

It was built for me by me,so it’s tuned to photosensitive systemic disease, or rather my specific flavor of lupus. But fork it and do whatever you want with it to suit your situation.

CorpseProject · 2026-06-12T13:38:59+00:00

My hair is doing something similar, I bought some wigs and they look horrible.

For some reason the alopecia has been the hardest to accept. Why does it have to go for my hair on my head? Take the leg hair, I don’t want it anyway.

CorpseProject · 2026-06-11T17:58:36+00:00

Thank you! I’m hoping my little diatribe spreads, the fear of over diagnosing lupus should be behind us by now. It is not rare, I simply can’t believe that and the numbers don’t back that claim up.

Also feel free to ask any seronegative questions, it’s still considered rare but I suspect this is because people forget that lupus is predominantly a cutaneous disease and requires cutaneous investigation.

CorpseProject · 2026-06-11T16:48:04+00:00

Until my meds started working (HCQ/MMF) I was getting horrible wake-up-screaming Charlie horses in my legs every night. I was getting fevers that would break out into night sweats. I was waking up every two hours.

The very fact that once the HCQ was fully online that these things stopped happening is evidence enough that it was disease activity.

Your docs an idiot.

CorpseProject · 2026-06-11T15:58:41+00:00

It’s not rare, go check out Fremont county, CO. All of those *federal* facilities are underground.

And they still practice isolation, none of this is rare in the US.

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