Share this page!

Jennifer Brea🦒 Profile picture
Twitter logo
6 Dec, 4 tweets, 1 min read
Yoga was a very bad idea🤦🏽‍♀️
I can walk 14 miles in a day (but don’t recommend it!). I was able to build up to doing vinyasas like I can kind of do vinyasa...but all that twisting stuff? Bad, bad.
The weird thing is, since doing it, I can essentially tug on the fascia in my feet via upper body motions. I got on a call earlier today with two friends who have EDS and started to say, ”I know this sounds weird, but...”
...and they both chimed in and said, “Yup, stuff like that happens all the time...” 🤯

• • •

Missing some Tweet in this thread? You can try to force a refresh
　

Keep Current with Jennifer Brea🦒

Jennifer Brea🦒 Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @jenbrea

Jennifer Brea🦒 Profile picture
9 Dec
Genuine question: why is it so difficult for doctors to believe patients who are having a hard time breathing, not due to lung or cardiovascular problems, but rather, central apnea? It seems to be a fairly simple problem to demonstrate and measure.
Central apnea was one of my main complaints following my thyroidectomy. When I laid flat on my back, I would become paralyzed and locked in a perpetual cycle of repeated apneas lasting 30-60 seconds.
We had no idea what was going on—it is truly terrifying to not be able to tell your diaphragm muscles to contract at will—and after a few days, it seemed to be getting worse. I stopped being able to sleep, so one night, we went to the ER.
Read 18 tweets
Jennifer Brea🦒 Profile picture
8 Dec
In one of my groups, we have a woman with profound urological symptoms, pain, and gait problems. Positive Babinski. She is trapped in an NHS hospital in agony, untreated. They won’t give her a urodynamics test. Her neurologist’s assessment? It’s psychosomatic.
Another woman is having profound breathing problems, likely due to central apnea (very similar to what I had). She can only inhale four times a minute. Gets worse when laying flat. She is unable to get anyone to take her seriously. They’ve decided it’s psychosomatic.
I already know that if she has Chiari or CCI, she is very unlikely to have access to surgery in her country, even if that is what she needs.
Read 6 tweets
Jennifer Brea🦒 Profile picture
7 Dec
Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"––I really do want to understand what is at the heart of this. Frankly, it has been hard.
There is a lot of misinformation floating around (or simply lack of education/awareness––again, it's a lot of different conditions, and I know next to nothing about most of them, other than the ones I happen to have). Image
I see a really big gap between how American patients are responding to this information v. patients in the UK & Europe, and I don't fully understand all of the reasons for that. I think that's worth discussing amicably, if we can.
Read 37 tweets
Jennifer Brea🦒 Profile picture
1 Dec
Vlad hits the nail on the head here. A lot of it is being generated by discussions on @s4me_info, a UK patient forum. I do my best to keep my mouth shut, but this has all been unbelievably painful and has taken a major toll on my mental health.
I know most forum members don’t engage in this discussion and may not even be aware of the running commentary about me and everything I say, but I am shocked that it is tolerated. (Anyone with a differing POV has long retreated, been put on moderation, or banned.)
I try to do my best to ignore it, but people point things out to me from time to time, thinking they are being helpful.
Read 11 tweets
Jennifer Brea🦒 Profile picture
30 Nov
We need a healthcare system that explicitly allows for two other specialty tiers that (at least in the US) informally exist:

1) the specialist internist (a PCP for specific diagnoses and complex cases that a “generalist internist” cannot possibly handle well)
2) Super specialist specialists. The handful of -its who exclusively see patients with the same diagnoses, like my neurosurgeon.
He was able to diagnose in 24 hours what 30+ MDs had failed to see. Because for him the “weird” and “rare” is what he says five times a day. If you have one of the handful of conditions he specializes in, he can save you a decade or more of frustration.
Read 11 tweets
Jennifer Brea🦒 Profile picture
29 Nov
I am so angry. So much of Jenny’s case should / could have been caught when she was a child or teen, before she ”got sick.” It would not be hard to get this right. We do not need some miraculous feat of science to put into practice what we already know to be true.
Any ME org that is not joining forces with other organizations to educate the ME community on #EDS and #MCAS, that is not talking about comorbidities, is failing patients. I count @MEActNet in that boat. We have got to do better.
Jenny was diagnosed with ME when she fell ill at university, but she was born with #vEDS, which has a genetic marker. She had obvious phenotypical signs, but they were all missed.
Read 4 tweets

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!

Follow Us on Twitter!

Like this author's thread?

Get emails when @jenbrea has new unrolls!

Check out other threads from @jenbrea!

Read all threads by @jenbrea