Hmm, now to find a way to send this to all the doctors I've met and fired along the way who said, "What's the point of getting a diagnosis, it doesn't change anything"....
Just started on substack and stumbled on this newsletter. Thank you so much for writing about EDS! I have 35 and I only learnt about EDS 1 month ago by accident. It explains the association for my vasovagal syncope, hypermobility, GI issues, mood swings, joint problems, depression and panic attacks. Right now I am still struggling to get it clinically diagnosed but reading up information helps me to understand my body better so I can learn how to manage it. Thank you!
You are most welcome! Sadly, you are not alone. So many people find out about EDS by accident, including myself. I am so glad you found my newsletter and my podcast! Thank you so much for the kind words!❤️🩹
Hi! This is the second time recently I've seen/heard it said that EDS can be misdiagnosed as FND. I would really love to find more resources on this - and perhaps beg for an episode on it?!
I was diagnosed with FND in 2022. I was told I was hypermobile over 20 years ago, and long suspected EDS but only got an official 'yes' for that last week. We also suspect possible CCI. POTS is the other one - and this, I'm sure, impacts/triggers 'FND' symptoms. Uprightness Vs Lying down are worlds apart. Anyway, without boring you to tears, I really am trying to unravel everything and see if there's a way to improve my quality of life (and thereby also give more to my family). And I think this is a very valuable topic for many. If EDS had been found earlier, and other comorbidities checked for, I can't help wondering if I may never have experienced the full brunt of these neurological issues.
Yes. It’s a common misdiagnosis. FND is a legitimate diagnosis though. I covered this recently in an Office hours/solo episode. It should be published soon.
Thank you so much for sharing that and I’m so glad the podcast has been helpful for you. You can submit questions directly on the website. You can even leave a voicemail.
Now there's a question. Here's some of the ones that stood out to me. Firstly, I loved episodes 70-73 with Pradeep Chopra. So great going through the body in that way.
66 Codifying Upper Cervical Instability was very interesting especially as I have many issues that could be due to this.
91 With Corinne the hand coach. My hands are giving me a lot of problems again, even using swipe on my phone right now hurts, so this was a great one to listen to.
Thank you so much for sharing that! I recently had Dr. Chopra back as a guest cohost which was really fun. I plan to have him on the show again in the near future.
I cannot find any providers willing to discuss this or MCAS locally. And unless I have unlimited cash there is no one to help period. Sad that we have to suffer even though we pay ridiculously for private insurance.
I totally agree! Have you listened to the podcast yet? Although you of course, cannot get diagnosed via a podcast, there are hopefully some helpful tips you can pick up.
Hmm, now to find a way to send this to all the doctors I've met and fired along the way who said, "What's the point of getting a diagnosis, it doesn't change anything"....
Thankyou for this. The pain is real.
Compression clothes, splints, Liba cane, creams, heat, meds. Don’t exercise with weights. The list goes on.
Yes it is!!!! 🤕❤️🩹🥲🙃🧬 Have you found anything at all that helps?
Just started on substack and stumbled on this newsletter. Thank you so much for writing about EDS! I have 35 and I only learnt about EDS 1 month ago by accident. It explains the association for my vasovagal syncope, hypermobility, GI issues, mood swings, joint problems, depression and panic attacks. Right now I am still struggling to get it clinically diagnosed but reading up information helps me to understand my body better so I can learn how to manage it. Thank you!
You are most welcome! Sadly, you are not alone. So many people find out about EDS by accident, including myself. I am so glad you found my newsletter and my podcast! Thank you so much for the kind words!❤️🩹
Wait - I actually listened to your podcast as well, thank you so much! ❤️
Hi! This is the second time recently I've seen/heard it said that EDS can be misdiagnosed as FND. I would really love to find more resources on this - and perhaps beg for an episode on it?!
I was diagnosed with FND in 2022. I was told I was hypermobile over 20 years ago, and long suspected EDS but only got an official 'yes' for that last week. We also suspect possible CCI. POTS is the other one - and this, I'm sure, impacts/triggers 'FND' symptoms. Uprightness Vs Lying down are worlds apart. Anyway, without boring you to tears, I really am trying to unravel everything and see if there's a way to improve my quality of life (and thereby also give more to my family). And I think this is a very valuable topic for many. If EDS had been found earlier, and other comorbidities checked for, I can't help wondering if I may never have experienced the full brunt of these neurological issues.
Yes. It’s a common misdiagnosis. FND is a legitimate diagnosis though. I covered this recently in an Office hours/solo episode. It should be published soon.
I can't wait. I keep checking just in case it's been uploaded. Meanwhile, I've been binge-listening to other episodes. So good!
Thank you so much for sharing that and I’m so glad the podcast has been helpful for you. You can submit questions directly on the website. You can even leave a voicemail.
https://www.bendybodiespodcast.com/
You totally made my day! Do you have a favorite episode so far?
Now there's a question. Here's some of the ones that stood out to me. Firstly, I loved episodes 70-73 with Pradeep Chopra. So great going through the body in that way.
66 Codifying Upper Cervical Instability was very interesting especially as I have many issues that could be due to this.
91 With Corinne the hand coach. My hands are giving me a lot of problems again, even using swipe on my phone right now hurts, so this was a great one to listen to.
Thank you so much for sharing that! I recently had Dr. Chopra back as a guest cohost which was really fun. I plan to have him on the show again in the near future.
Oh great! You're a great team!
I cannot find any providers willing to discuss this or MCAS locally. And unless I have unlimited cash there is no one to help period. Sad that we have to suffer even though we pay ridiculously for private insurance.
I totally agree! Have you listened to the podcast yet? Although you of course, cannot get diagnosed via a podcast, there are hopefully some helpful tips you can pick up.
https://www.bendybodiespodcast.com/
So comprehensive! Thanks so much, Dr. B!