im sick yo

by the current and most common diagnostic criteria, POTS patients must not have their blood pressure significantly drop when upright/standing in order for it to be considered POTS. a POTS diagnosis is only supposed to be made in the absence of orthostatic hypotension. very long story short: if your blood pressure drops a bunch when you stand up or are upright, you can not have POTS. doctors who say there must be low blood pressure or a significant decrease in upright blood pressure for someone to have POTS are wrong by the very definition of POTS.

but POTS patients can have low blood pressure in general, can have high blood pressure, and can have their blood pressure increase when standing.

POTS is not: low blood pressure, or a blood pressure drop when standing.

DI's research has been life saving.

Via Dysautonomia International on Twitter (click the above link) Swedish researchers just published the first #POTS symptom score, based on the 12 most common symptoms reported by 1000s of patients in the Big POTS Study, a collaboration between Dysautonomia International, Vanderbilt & Univ of Calgary.

I don’t have the spoons rn to image ID, but using that self-reported scoring system, I score 9/10 on a daily basis. Meanwhile, I’ve been downplaying my POTS symptoms because I keep telling myself I’m sooo much better than I was in 2019, which really only serves to highlight how ill I was in 2019.

AS describes exactly the pain I have

oh boy okay as i’ve mentioned i’ve got an extensive document on AS symptoms & mythbusting coming soon but i’ve been wanting to do a quick summary of “wtf is that?” for a while and this is the perfect opportunity! most stats in this post from this 2022 summary article (link) but note that their gender stats are questionable as recent studies show equal prevalence regardless of ‘sex’. so!

wtf is AS?

ankylosing spondylitis is a systemic autoimmune disorder characterized by inflammatory back pain. it’s estimated to be 1.5 times as common as rheumatoid arthritis and over 6 times as common as lupus (SLE) but is incredibly underdiagnosed, which is why i’m super loud about it!

key symptoms of inflammatory back pain:

most frequent onset in early 20s but can be juvenile or later. articles say onset is prior to age 40 but seeing as i’m deeply skeptical of all things medical establishment i wouldn’t rule later onset out

either no history of mechanical trauma or unrelated (for example, i have a herniated disk but had AS symptoms for years before then)

pain gets worse with rest and better with movement - most sources say “exercise” but in the experience of me and other folks with AS i’ve talked to that’s debatable at best. my pain gets worse after remaining in the same position and better with rotating, stretching, etc; sitting upright is most painful for me, but on typical days i need to alternate laying down and standing / walking briefly

morning stiffness and back pain that wakes you up at night

alternating buttock (butt) pain

articles say inflammatory back pain improves with NSAIDs but i’ve never met any chronically ill person whose pain has been made manageable with NSAIDs

AS can also include (usually asymmetrical) joint pain in other locations (especially large joints like the hips, shoulders, neck, and knees - juvenile AS commonly starts with pain in one or both knees prior to spine involvement), fatigue, peripheral neuropathy, and enthesitis (inflammation of tendon insertion points, especially plantar fasciitis).

testing and diagnosis:

CRP and ESR for inflammation. 40-50% of people with AS do not have elevated inflammatory blood markers.

HLA-B27 gene marker. less common in people with non-radiographic AS (doesn’t show up on an x-ray) and more common in white people. only 6-10% of people who are HLA-B27 positive develop AS and plenty (10-30%) of people with AS are negative for HLA-B27 - myself included!

x-ray and MRI for spine inflammation. both of mine were negative; the absence of clinically visible inflammation does not rule out AS. there is a growing body of literature and education about non-radiographic AS; my rheumatologist put me on 20mg prednisone for a week while waiting on my bloodwork and scan results and when that helped my back pain immensely, said “yep it’s definitely inflammatory then” and that this is the standard of diagnosis/care rheumatological associations are advocating for

The past two days, I've gotten up for a 4am yoga class and honestly I think it was worth the interrupted sleep, I feel amazing now.

when people hear about people with depression struggling to motivate themselves, or people with adhd having executive dysfunction, they think of not cleaning their room, or not doing work. these are all parts, but you know what else can and often does happen?

not brushing their teeth

not showering for days, weeks, or even MONTHS at a time (when i was younger, i would literally only shower maybe once every month or so.)

not cleaning their room… to the point where old food is still there and is rotting. i try to eat downstairs these days bc i know if i bring food up into my room it’ll stay there and rot.

not washing clothes

not changing clothes

etc.

and i feel like everyone ignores those traits because they aren’t hygenic. when people imagine a dirty room due to executive dysfunction and/or depression, they imagine a room with stuff scattered all over the place — never a room with things rotting. never a room that is so dirty you can barely see the floor.

oftentimes, neurotypical “allies” support us until we’re gross. until we haven’t showered in so long we’re horrifically greasy. until our teeth are noticeably yellow — or we even lose them (that also overlaps with classism!). until our rooms go from “messy” to “nearly impossible to navigate through”. until our symptoms are ugly.

my pain scale invention. it goes from 0-16. you fill it out like this:

There's no real way to measure how much pain someone is in. Or how fatigued they are. It's about discrediting the villain. Not only are they woke, but they're a benefits cheat! Faking illness because they're too lazy to work.

Many disabled people go stealth as well.

Whenever I apply for a job, and I have to fill out the forms that ask if you have a disability, I have to lie and say no. If I don't, they'll find a reason to not hire me. Or they'll find a reason to fire me. I also don't ask for accommodations because I know that's just asking to be fired. I can't show how tired I am or else I might be fired. I live in terror and exhaustion because of this.

What’s, depending on your comfort with the topic, the lowest having the disease ever brought you, and also, what is the best treatment or solution that has helped your life immensely since your diagnosis?

My worst was when my mom yelled at me when I was younger when “the rash” came back, and that I was limping and couldn’t walk properly in public while on vacation.

(The second worst was when I was nearly approved for a clinical trial for HS treatment, only to be declined at the last second due to my mental health issues. 🙃)

I am disabled working in an open space full of chatter and bright lights. I am fine working from home in an environment I control and set up according to my needs.

Accommodating my vision problems? No problem! Tinted glasses with the right prescription and a blue light filter. Similar for my hearing loss, though hearing aids are utter shite and way too expensive (but people can speak up, type their questions, etc.). But there is no way to just erase my pain. I'm about to kill my kidneys and liver with OTC meds and the pain is getting worse so they're not touching it; anything stronger will make other things worse, like my memory, ability to drive, etc. There's no way to just erase the brain damage from the excess CSF, nor to ease it without multiple, dangerous surgeries that are nearly guaranteed to fail over and over.