richellesepulveda.bsky.social
Long Covid, MECFS, ADHD, etc.
Patient-led research is my jam.
A bit obsessed with GIP.
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Both of my sisters LOVED to tan (they are darker complected than I am) and developed wrinkles in their early 30s.
I found this amusing, since they always teased me about my frumpy & boyish clothing as teens, and I didn't really care much about aging as they did.
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I'm kinda used to this, as I accepted when I was about 12 years old that I don't really tan, just burn.
I wore long sleeves and almost never wore shorts, along with hats starting back then.
This had the benefit, too, of preventing wrinkles until I hit my 40s.
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Disability follows the same pattern: those who think it's easy to overcome know best how to advise us.
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Me too!
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The cNTS in the medulla has been a structure that is implicated in ME/CFS, and is also one of the main locations that make GLP-1 for brain use. Seems to be a heck of a coincidence!
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Yeah, that's what I told them.
You can't change the other person, only how you respond.
They were surprised when I told them plenty of college students call their parents less than once a week. They thought the average was at least twice a day.
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We didn't watch 200 seasons of supernatural to just let the demons in our house.
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I've had students ask me how to help their parents have less anxiety (psych prof) because if they don't check in within 30 minutes after class was supposed to end, mom has called the cops in the past worried the student was dead/kidnapped.
I had to tell them you can't solve others' anxiety.
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I mean, I'd appreciate only the "oh look, we proved that weight loss is not simply willpower and metabolism is a lot more complicated than anyone ever thought" but holy SHIT, metabolism is a lot more complicated than anyone thought and it is proving to affect SO MUCH shit we thought was unrelated!
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Viagra is also supposedly great for menstrual cramps, too, but they decided that half of the population didn't need it.
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Yep, that's why I'm on it. It helps stabilize intracranial pressure and CSF production. Plus, less squishing of the brain stem means the area in the medulla that makes GLP-1 (the cNTS) is able to do more of its "lower inflammation" job.
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I am not sure. Adhesions around the pelvis are more discussed.
I hadn't thought about it before one of Renegade Research's Roundtables with Dr. Peter Rowe discussing it, especially in regards to TOS.
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It wasn't until I started wearing it to bed that it made that much of a difference, but that was after using it enough that I knew it wouldn't aggravate other spinal issues and it would likely be safe.
Testing in small doses over a period of time is good for many ME/CFS treatments!
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That's more or less what I did. My imaging was "inconclusive" and I had heard others talk about how it helped them. I wore it on and off for a while, not seeing a whole lot of difference except to keep my posture straight when reading, using my phone, etc.
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If you had some adhesions on the nerve/muscles in the area, then every time it moves it could yank them, causing more inflammation, which could lead to more adhesions developing. A bad feedback loop!
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I’m late to the party but it sounds like Peluso is very much NOT following in Strauss’s footsteps & is being a much better scientist about it, so yay for that!
bsky.app/profile/ezra...
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I wonder how many of us have adhesions on nerves that cause neuroinflammation with the slightest tug of the surrounding muscles?
And with us already overwhelmed with neuroinflammation, it would easily push us over the edge into a crash from barely lifting our arms.
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I'm just guessing on the adhesions, but symptoms and crashing response when I would "stretch" one of my affected areas a bit too much kinda pointed in that direction. But tiny little gradual movement to break them up VERY SLOWLY over time has really helped with TOS and spine stuff.
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I started with my lumbar spine stabilizing years ago, as that was what I thought was causing all my back and hip pain.
It helped some, but slowly dealing with various adhesions over the years has been really helpful. I think my CCI issues led to the rest of my spine stuff to balance it out.
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There's a spot in my thoracic that also has pain, but not necessarily triggered by the collar. I think mine has to do with adhesions at the nerve roots (around t3-t4) and a lack of flexibility there. Dr.
Raymond Perrin focuses a lot on that area in his book.
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"Sweet Caroline". Just hearing that part of the song makes me angry after I found out who it was about and how old she was when the song was written.
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I often default to assume most people with ME/CFS have some CCI/AAI unless proven otherwise, as anecdotally so many people I have talked to have found this to be true for them, even when originally told that no, their imaging was negative.
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Symptoms, too, can help. Lots of migraines can imply ICP issues (too high or too low), eyes feeling like they are being tugged, tinnitus that changes with head position (especially pulsatile tinnitus!)
Spine issues too suggest issues, like I have mild scoliosis.
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Connecting with patient groups (there're several on Facebook, but also other places) can help with that.
A finding regarding an empty sella (or partially empty) does suggest ICP issues.
I also have a bit of "cock robin" head tilt, which helps me know where to look on my images for CCI movement.
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That's a good question! The first step is typically imaging of the neck and head. Unless you have a neuro-radiologist who has experience with the subtle differences that can affect us, the results will probably be described as "within norms."
I had to learn to read my own images!
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Good time to revisit this thread.
bsky.app/profile/frac...
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I did sleep studies, but that wasn't much help ("Your sleep is great!" 🙄)
Wearables, both Fitbit and Oura, have helped me with daily tracking to see how my sleep cycles are doing, approximately.
I'm comparing changes over time, because I also know wearables are not perfect measurement devices!
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If I don't listen to my body, no one else will! 😁
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Stabilizing my neck and jugular vein allowed intracranial pressure to stabilize as well, which then helps the CSF move efficiently and the glymphatic system to clear waste better.
When NREM2 worked better, REM no longer overworked my brain before waking.
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I like to consider how sleep cycles are critical to the manifestation of ME symptoms, and dysfunctions in the different cycles can then be used to consider what types of treatment might make a difference for different patients.
My issue was mostly in NREM2, which was extended (and inefficient).
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Like now, if I feel that leg heaviness first thing in the morning, or breathless on very mild activity, I can use a nicotine patch and stop/reverse the PEM crash. Before that would work SOMETIMES, but not always.