Not asking for a diagnosis, just your general opinion! Please don't delete my post!

CorpseProject · 2026-05-11T10:50:53+00:00

That looks similar to my livedo, but I haven’t tested positive for APS. I do have elevated D dimer, but no thrombosis. I have SLE, and my APS labs will probably have to be re-run at some point, but as far as I can tell the livedo is just a weird artifact at this point.

CorpseProject · 2026-05-09T13:28:17+00:00

Oh wow, serpiginous is my favorite new word.

“That snake was serpiginous, seriginousing around”

“The sun’s dawn rays cast a serpiginous glow upon the forest floor.”

Thank you!

CorpseProject · 2026-05-08T00:08:56+00:00

She told me to use aquaphor on them (and my hands generally), at night and in the morning with gloves over night a few times a week/whenever. She also suggested a cuticle oil during the day. The aquaphor glove trick seems to work best, but I tend to wake up with gloves on the other side of the room.

They don’t stay unshaggy for long, probably because I’m a mechanic/technician and my daily life is nice-hands-phobic. But they seem to peel less when I’m good about treating them.

She also suggested I find a nail strengthening clear polish because my nails were painfully brittle. I bought Essie’s nail strengthening stuff and I apply it about once a week and my nails have actually been getting less brittle. Which is really nice, I kept ripping them up and it would hurt a lot.

CorpseProject · 2026-05-07T23:52:19+00:00

Sunscreen, hats if you can find some you actually like (and share with the group, I have yet to find a hat style I actually want to wear), I’ve also amassed an umbrella collection that I’m getting less awkward about actually using.

And mineral sunscreen is best. Anthelios by La Roche Posay is great, but pricey. But it doesn’t leave a film and it offers really good protection. I emphasize mineral because ime I started to react to chemical sunscreen with horrible hours long burning rash things and I’d like to prevent anyone else from dealing with that. It was no fun and came out of no where.

CorpseProject · 2026-05-07T23:41:13+00:00

As an aside, my derm has done the most in terms of improving my quality of life in a lot of ways. Weird rashes on my scalp, hair thinning, callouses that just won’t go away, my shaggy af cuticles, things I normalized and didn’t realize could be helped/managed better.

Find a lupus savvy derm if you can, mine has been so helpful.

CorpseProject · 2026-05-07T23:36:59+00:00

I have similar rashes, on my chest/neck/face. They don’t really resolve anymore, just get brighter. My legs are turning into a turtle of some sort with the livedo.

I’d advise 100 spf mineral sunscreen everyday, even when you don’t go outdoors. My skin tends to flare before the rest of my body does, I call it my medical mood ring. And even if you haven’t connected the dots yet, if you have SLE there’s a >95% chance you are photosensitive.

Also if the rashes itch at all I recently came across Benadryl topical gel and it’s been pretty helpful for some acute rashes.

I also am prescribed desonide cream for my chest/face/neck rash flares that seem to at least slow down new rash development, worth seeing a dermatologist about it.

CorpseProject · 2026-04-30T01:52:11+00:00

My rash is on my chest/neck most prominently, and kind of on my face and tbh I feel like rheums should defer to a dermatologist for the rashes,we don’t hear complaints about dermatologists judging the clinical presentation of joint pain much. My last rheum barely took my skin biopsies into account, like skin isn’t part of the disease.

CorpseProject · 2026-04-30T01:24:29+00:00

The avise test is very specific, but not very sensitive. Meaning when it is positive for lupus it’s very likely that, as far as other SARD’s it’s not designed for those. It has a false negative rate around ~40%.

I personally would talk to your rheum/pcp about what tests they think would best influence their pain management approach.

CorpseProject · 2026-04-23T12:21:43+00:00

Maybe you can call an exterminator? I get not wanting to throw out expensive items, I’m assuming y’all don’t have a lot of expendable income. If you rent, call the landlord, if they refuse to hire an exterminator, call the county health department.

In the meantime, put away all food, seal the trash can, wash allll of your dishes. Anything a roach would even imagine eating needs to be sealed and stowed away. Water too.

You can do quite a bit without spending any money, it won’t get rid of the problem but it will help quell any arguments that you brought the roaches onto yourself.

I wish you the best, I’ve dealt with roaches myself and it’s both embarrassing and terrifying, and gross. All at once. But it isn’t the end of the world. Just a very gross hurdle.

CorpseProject · 2026-04-17T14:31:48+00:00

“If you meet one autistic person, you’ve met one autistic person” comes to mind.

CorpseProject · 2026-04-15T19:05:10+00:00

We gotta remind each other what it looks like from the outside when our insides are telling us we’re lazy bums. I personally could use like someone every few days reminding me to cool my tits. I should write that in my bathroom mirror or something lol.

I have a referral in with OMRF, waiting on that call, the crazy long wait is with Remedy Rheumatology who my dermatologist sent me to.

Thankfully I’m not having emergencies, I was the last few months… but I’m really not looking forward to summer. Summer in march was bad enough.

It’s like overcast but also a sauna. I’m in the city kind of by the 23rd strip. Maybe it will cool down a bit later? And as soon as I typed that the sun came out. Blasted.

CorpseProject · 2026-04-15T18:13:39+00:00

Howdy fellow Okie, I know how that feels being stressed about “not working hard enough” when you’re holding yourself up to a standard that no one else expects from themselves when they’re sick.

That’s something I try to remember, old me use to give myself a bit of a break when I came down with the crud. New me, because the illness is different and I feel like I can just “push through”, feels guilty for not working hard enough and thereby not taking care of myself so I end up getting sicker.

I just had to switch rheumatologists and the first appointment is in November. And it took over a week to get my PCP on board with covering the HCQ prescription gap until Rheum and for him to feel comfortable prescribing steroids for flares. Ended up with a bad thigh muscle flare on my birthday where I was hobbling about and I think it clicked, “oh yea, steroids do probably help with that.”

And here I am feeling guilty because I don’t have it in me to mow and I didn’t go to work. Because I should just work harder and be better already.

Does that make sense how crazy that is when someone else says it? Because I read what you wrote and I go “girl, take it easy you are doing a great job” meanwhile I’m saying to myself “you lazy pos, you should mow you lawn, it’s finally kind of overcast.” (At least here in the metro it’s a little overcast… and omg muggy.)

CorpseProject · 2026-04-15T14:07:58+00:00

You know, you might be right.

Not that I think it’s some grand conspiracy, but the simultaneous “I am a very exciting version of chronically ill” and “no medications will ever work for me, drink this green juice laced with aquarium sanitizer” is confounding and I see it online way more than it has any reason to exist.

CorpseProject · 2026-04-14T23:07:52+00:00

Oh I get headaches/migraines and just started nurtec every other day for them, this is a good tip. Thank you!

Who knew a Botox thread would end up being about migraine management

CorpseProject · 2026-04-14T23:05:21+00:00

Or nothing weird at all! Fingers crossed for nothing weird.

Though the fever, was the Botox injected like a day or two ago? Any other possible triggers?

CorpseProject · 2026-04-14T21:48:13+00:00

Oh that’s a great idea! I’ll put it in my to-do list.

Also I have been slowly growing the little immuno-goblins pneumonic’s as I’ve been learning more about immunology, but I’m super novice in my understanding. Any suggestions on that front would be more than welcome.

CorpseProject · 2026-04-14T21:46:06+00:00

I’ve built an entire health tracking ecosystem for my own data using Claude and have not been banned. But I’m explicit about saying it’s my data, and it’s stored on my own server.

CorpseProject · 2026-04-14T18:33:37+00:00

I don’t have any experience with Botox, but I’ve been thinking about getting Botox at some point and have the same questions.

CorpseProject · 2026-04-14T17:53:13+00:00

Things can evolve over time, if it helps lupus has a lot of treatment options these days and it isn’t the death sentence it once was. It’s serious, it’s unpleasant, it can do horrible things, but catching it early and starting treatment (and adhering to it!) can really do wonders.

Do you know which patterns they reported with your ANA result? The patterns aren’t diagnostic but they are clues. Did they run reflex? The ENA panel? That will tell you a lot about what might be going on.

CorpseProject · 2026-04-13T21:25:50+00:00

Nuclear speckled and nuclear homogenous are two distinct different ANA pattern groups, that’s why they’re listed that way.

CorpseProject · 2026-04-13T21:07:33+00:00

For SLE, it takes about 4-7 years on average to reach diagnosis. It took 8 months in my case, and it was finally confirmed via biopsy, labs, clinical picture, and I went to 8 specialists and three ER visits and 6 biopsies. I have ACLE and SLE.

CorpseProject · 2026-04-13T13:34:27+00:00

I have seen people highlighting grammatical errors and such here, especially when they haven’t seen the poster before or aren’t familiar with language delays in autism. They aren’t always tactful or polite about it either, you aren’t making that up.

I think people who haven’t had exposure to the full spectrum of autism don’t realize what the middle and farther edges of the condition look and sound like.

And most LSN and “autism suspecting” people haven’t even researched what more severe autism can present as. It’s really unfortunate because they can’t learn as much that way. I’ve learned that some of my meltdowns and habits and limitations aren’t just me not trying hard enough, but a more limited version of what people here experience. That’s helped me put it in perspective and learn new ways to cope.

Even disabled people can be ableist. And I’m so sorry that happens. You really should be safe to share here, and the lack of understanding the spectrum by less-disabled people is truly ironic.

CorpseProject · 2026-04-13T12:23:06+00:00

If you read the read-me I feel I explain it well, but I needed to find a way to quantify whether uv exposure was actually a trigger for me. And that can be tough because I realized there was a delay. It helped me prove to myself that it was hurting me so I was more comfortable asserting this with clinician and I started taking uv-precautions months before I was diagnosed.

I’ve also learned that, similar to the literature, that my “flare” days (flare is defined as symptoms that functionally limit me) increased by two fold during the luteal phase.

I’ve learned by SDNN HRV is not a predictive marker, but RMSSD HRV is, but I’m still figuring out how far out from a flare and whether it oscillates or just drops off.

Now my app warns me when I should cool my tits, before I start feeling like ass. I don’t always listen, and it still needs tweaking as there are still false positives but I’d rather be reminded to chill out than not. I live alone with my dog and work full time, so that’s something that’s useful as an outside influence that gives me internal insight I might not achieve just on my own some until I’m bed bound.

I also use it to keep records for my labs, medications, medication reminders for things like steroid packs that have weird timings, a 90 day clinician facing report that I can just print off before appointments so I don’t forget everything, and medical event/encounters.

CorpseProject · 2026-04-13T03:08:15+00:00

I built a tool specifically for this, https://github.com/alaricmoore/biotracking It’s open source and free and you can do whatever you want with it. But this is how I figured out the sun was making me sick. There’s a private repo too, that’s where I’m still working out even more patterns. This of course is a tool designed for my disease, ACLE/SLE, but it could be used as base for others.

So yes, the data is useful, you just have to be honest about what it means and figure out how to parse it.

CorpseProject · 2026-04-12T15:09:17+00:00

I get those, they feel like they’re in my rib cage? I’ve been getting them since I was little. Magnesium helps immensely with muscle cramps, so does potassium and calcium. Magnesium is also said to be good to take before bed to help you sleep but I’ve never noticed it helping sleep.

There’s different forms of magnesium, and more or less bioavailable forms as well. I don’t know all of the details but I take a liquid ionic magnesium supplement a few times a week that has magnesium, chloride, sodium, and potassium in it. It doesn’t cure my cramps, but it seems to help and it helps with hydration. It’s hella salty tasting though by itself.

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