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@abchronic
I wish I could go to a doctor and just list every single symptom I ever experienced no matter how small and unconnected they seem and the doctor is nice and patient and knows everything and they nod and smile and explain that every symptom I ever experienced is connected to like one rare and often overlooked issue that's sooooo easy to fix with like. a pill. and then I never have to worry about anything ever again.
it's so tiring to have diseases and ailments
tyranny silently mourning the loss of wicander's blissful ignorance feels so heavy
Migraine sufferers will be like "it's not like I'm disabled or anything, it's just that if I do any of these normal everyday things other people do all the time, my head explodes. But I'm fine honestly, as long as I avoid doing anything ever and my environment and the weather never changes, then my head explodes a little less"
I’m ready to be transformed by the ibuprofen . I’m ready to be born again in its purifying light.
I find it very offensive that the more unwell you are, the more things you have to do to maintain your health. Things like following special diets, going to medical appointments, making big and important decisions about what treatments to use. At the same time, the more unwell you are the less energy you have to do all of these extra things. It seems grossly unfair.
Deadpool & Wolverine dir. Shawn Levy | 2024
it should be illegal to take a nap and still have a headache when you wake up. like no i shut it off and back on again why are you still here
having chronic pain is like *adjusts sitting position* *adjusts sitting position* *adjusts sitting position* *adj
why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."
but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.
that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.
One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.
(Dr. Goldstein, The Dysautonomia Project)
worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.
anyway, i legit have NEVER seen this discussed until recently and i thought i should share.
Pritzker Molecular Engineering researchers led by Prof. Jeffrey Hubbell showed that their compound can eliminate the autoimmune reaction ass
Is this a prank? What….
Edit: holy heck it’s real…
They might be able to help us…
it's always interesting finding out how my body's going to react when I eat something I'm not supposed to
occasionally I pass undetected like a thief in the night
other times 24 hours pass and then I get a note from management that they are not surprised, just disappointed
and then finally there's defcon 1, immediate purge mode
A doctor saying "Good news! Your labs look great" is like if you were watching a cop show and the chief walked in like "Great news, everybody! The best news! The killer is still at large and we have no leads."
i feel like every human should max out at one disability or chronic illness. like when i hit adolescence and my brain chemistry went “bipolar time now?” the response should have been an error message like sorry! this slot can only contain one (1) item and has been filled with childhood asthma. i would even allow the possibility that you can overwrite previous disorders like “you have equipped chronic migraines and so no will no longer display symptoms of bipolar disorder.” i just think it should work that way.
Low-level nausea is a miserable kind of sick. Like yes I’m barely inconvenienced but also no I can’t do anything at all.
I think it's cool if a cis woman goes on testosterone, or gets top surgery for aesthetic/affirmation reasons, or even gets phalloplasty.
I also think it's cool if a cis man goes on estrogen, or gets breast augmentation for aesthetic/affirmation reasons, or even gets a vaginoplasty.
It is my belief that bodily autonomy doesn't depend on identity. You have the fundamental right to alter your body as the want or need arises, because when you don't own your body absolutely, you own nothing.
i think something often missing in these discussions is medical reasons. testosterone is proving to be an effective treatment for things like pcos and endometriosis, but medical guidelines firmly state treatment should be stopped immediately when the masculinizing ‘side effects’ start. by normalizing looking androgynous/gnc we will allow disabled people more options for treatment, or really, any treatment. because for now the widely available options for endometriosis are progesterone, which makes many people horribly depressed, a hysterectomy which is obviously a pretty drastic thing, or testosterone.
and i think the number of cis women who want to take testosterone for purely aesthetic reasons is minuscule compared to how many have endometriosis (between 2 and 10% depending on the study) or pcos, and by normalizing things like women having body/facial hair, deep voices etc we’ll be offering them a chance to treat their illness without being seen as freaks
So I happen to have hypermobility that’s slowly fucking up just about every joint in my body. At one point the pain was so bad it significantly contributed to my getting fired from multiple jobs.
I saw a reference on the internet to even low doses of testosterone helping with joint stability- and therefor preventing or slowing joint damage. I brought it up to my doctor tentatively, wondering if it was anything more than gossip. She agreed readily that this was well known and there were studies to back it up.
I asked her WHY, in the years she’d been treating me, she NEVER brought this up. She confided that there were Side Effects. I listed the effects I’d seen on my friends who’d been on testosterone for years, and she nodded along. I waited for her to add something more dangerous that might apply to me.
She had nothing.
She really believed it was such a sure thing that I would rather have chronic pain and potentially reduced mobility than having a lower voice and some extra hair.
As it happens I’m agender and don’t give a shit. But even if I wasn’t- I was loosing jobs and in daily pain!!!!
Binary gender expectations, lack of respect for bodily autonomy and misogyny can fuck you up in ways you didn’t even realize were possible.
Almost exactly 1 year in on low dose testosterone gel and not only do I have GLORIOUS muscles. Seriously my arms are fantastic. But my pain hasn’t been lower in probably 15 years and I’ve stopped worrying about mobility loss. Every part of my health is improved.
There is no good medical reason that this had to wait for years to happen, except that our society is real fucked up about bodily autonomy, gender, and health.
TESTOSTERONE CAN TREAT HYPERMOBILITY?!?!
Fucking HELL!!!!!
