Discover and read the best of Twitter Threads about #pots

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Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
Adding thread about vascular and nerve entrapment
Thread: Thank you @violetbakes for the pictures backing up the next installment of what I think would be useful to #EDS patients. Something that could be used if going to the hospital
Thread: thank you @ABMollyblum for the next installment of my pinned thread of things I’ve found useful in managing #EDS #EhlersDanlos in my wife and daughter. Info for Gastroenterologists for your GI appt. alanspanosmd.com/wp-content/upl…
Read 11 tweets
When a doctor says “why do you need an #EhlersDanlos diagnosis, there’s no cure.” It demonstrates a lack of understanding of medicine, science and patient self-advocacy. I am NOT claiming these tweets are the best or most current sources, nor is the list of reasons complete 1/11
For most with #EDS the extreme relief of being told “it’s not all in your head, it’s real and there are others like you” is reason enough. So many with EDS feel alone. Diagnosing someone with conversion disorder instead , is it’s own problem! 2/11 ncbi.nlm.nih.gov/pmc/articles/P…
While #POTS, #MCAS, #Osteoporosis in young women, and many other conditions may be less common in general they are very common in the #EDS population. If you have a horse, think horse conditions, but if you are looking at a zebra, think zebra diseases 3/11 ohtwist.com/about-eds/como…
Read 12 tweets
1. This is a very useful thread #MedTwitter because it tracks common reasoning errors that lead doctors to readily accept psychosomatic dx for #MEcfs and other contested conditions like #EhlersDanlos, #mito, #dysautonomia, #LymeDisease, etc.
2. Start with the duty that defines your profession @strauss_matt - to ensure that every patient with a need for med care (medical testing, treatment, or support) receives it when she seeks it from you. Mistaken psychosomatic dx violates that duty in every case where it occurs.
3. No doctor should have to be told to err on the side of medical caution. Your job requires (a) humility about the limits of dx science and (b) historical awareness of immense suffering caused by psychological explanations for #MS #epilepsy #PepticUlcer #Parkinsons #lupus etc.
Read 8 tweets
My wife and I wow a huge debt of gratitude to @roomcmoo and @H2OhTwist and they don’t even know what they did! You see my wife (#EDS #POTS #MCAS) and my daughter (#EhlersDanlos) are at the beach for an 8 day vacation and walk up to a mile each day. So what??
I met my am a wife almost 6 years ago. At that time she had chronic bronchitis and both she and my daughter had bad asthma. I also learned her joints dislocated regularly, she had G.I. issues, she would get adrenaline and a million other debilitating symptoms.
She had been to more doctors than she could count and had more test then she could count. Her medical file was at least 8 inches thick. She had never gotten a clue to what she instinctively believed were connected conditions. She was told “it’s all in your head” or “anxiety!”
Read 10 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets
Do you have Postural Orthostatic Tachycardia syndrome #POTS?

Approximately 25% of patients with #MECFS also have #POTS

This @FrontPediatrics study shows that a SHORT tilt table test fails to diagnose #POTS accurately

#pwME
frontiersin.org/article/10.338…
This large @FrontPediatrics study finds that only a full TEN MINUTE tilt table test accurately diagnosed ALL #POTS patients

#MECFS #pwME
frontiersin.org/articles/10.33…
nearly half of #MECFS patients have severe cardiovascular symptoms that require treatment/management

@FrontPediatrics study found:

25% of #pwME also had #POTS
17% of #pwME also had #orthostatic intolerance #OI
<1% of #pwME had fainting spells

frontiersin.org/articles/10.33…
Read 3 tweets
(Thread)

EDS experts shouldn't mention co-occuring anxiety in their research articles unless they commit to making it explicit that #EDS #POTS #MCAS can all mimic anxiety symptoms+that it's common for psychiatric misdiagnosis 2b weaponized against vulnerable patients leading to-
-- #mPTSD and iatrogenic trauma.

Anything less and they're giving non-expert rheums and PCPs carte blanche to slap "it's all in your head" onto every "difficult" patient without reading further for nuance. It's irresponsible, unethical exacerbation of patient trauma.
Thanks for coming to my TEDtalk.
Read 11 tweets
Here's my lastest update Twitter #Disability & #ChronicIllness Hashtags - previous update 10.17.18

Please share it.
I'll have a PDF version of this for download on my Ko-fi by this time tomorrow. Link at the end.
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 29 tweets
👋🏼 just wanted to share with you a new diagnosis. As suspected, I have craniocervical instability. My skull is compressing my brainstem causing my breathing + other problems. I’m having surgery later this month to stabilize my skull + neck. Learn more: medium.com/@jenbrea/a-new…
Craniocervical instability and atlantoaxial instability are a common complication of Ehlers-Danlos Syndrome, especially #hEDS. I don’t meet the criteria but it’s clear hypermobility is an important part of my clinical picture. #Nightingales
A handful of other #pwme have also been diagnosed with CCI/AAI in the past year including @jeff_says_that who, at one year post-surgery, considers himself in remission from both #POTS and PEM: mechanicalbasis.org
Read 11 tweets
I do think medicine needs a Catholic Church-style reckoning. I know that might sound like an odd analogy but when you stop talking about bad apples and realize the problem is fundamental and systemic, that it destroys lives... #DoctorsAreDickheads #medtwitter
...and that the reverence we have for the individuals that comprise the system helps no one (not our doctors, not the patients they are sworn to protect), only then can you hope to fix it. But you have to kill your old illusions first. #DoctorsAreDickheads #medtwitter
(I don’t know how or when that will happen.)
Read 35 tweets
Updating Twitter disability hashtag thread.

@AllisonR has educated me that I should use Sentence Case for #Accessibility. Graphic reads: # symbol followed by the word Hashtag in white lettering on a blue background.
I have #brainfog so I know I missed someone. Please add your favorite resources as a reply.
Do you want to share your disability experience with others? Try these hashtags.

Amplifying stories

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 16 tweets
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
Read 12 tweets
In case you are also chronically ill and planning for potential power outages or heat waves, here are some things I do or am considering doing for copes

Hopefully this will help someone else
It sounds weird but this dog pad is pressure activated cooling power. It requires no electricity and is reusable. (You can also make it RLY cold in the freezer.)

There are big dog sizes that work for my entire body

m.bedbathandbeyond.com/m/product/chil…
Consider filling a bathtub or bucket/tub with cool water. Dip your feet or entire body in to lower your body temperature.
Read 28 tweets
One last thread on the #DysConf2018 by @rndNumGen. Hasan Abdallah of The Children's Heart Institute presented Sunday on "Stubborn POTS: Why won't my #POTS respond to treatment?" If treatment isn't effective after six months, it's important to dig deeper. (1/7)
@rndNumGen #POTS is a symptom complex rather than a disease entity in itself, with an underlying heterogenous pathophysiology. It has an unpredictable varying course, and the medical management paradigms is evolving. #DysConf2018 (2/7)
@rndNumGen To dig deeper, look at underlying pathophysiology. Look at medications that are being used--dosages, drug targets, interactions, etc. to see where you may be able to make changes. Look at comorbidities;they lead to more clinical severity and complex management. #DysConf2018 (3/7)
Read 7 tweets

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