76. Orofacial Pain with Robinson-Smith, DDS

[@jodidejong3636]

Much thanks to Dr. Julie and Linda. TMD was one of the first warning signs for me, now that I look back, that I had EDS. I had surgery on both jaw joints at age 18. I find your 3 points most helpful in caring for my jaw over the past 40 years. I have always felt that the stress I feel when my jaw locks open is silly...so it was good for me to hear that others feel the same. I also have had the "Dr problem"... where they use always or never. I have had many Drs. promise great results (& there aren't any results and maybe I am worse off) and some that deny EDS is even a "thing"....esp. when it comes to the jaw! Salads are the worst! But I love them so I will chop more! 😊 Thank you!

[@bendybodiespodcast]

you are most welcome. Have you listened to any other Bendy Bodies with the Hypermobility MD podcast episodes?

[@jodidejong3636]

I have listened to many and am finding them very helpful in dealing with my EDS and those of my five children and now my grand children. @@bendybodiespodcast

[@sandrafischler3515]

I’ve had to recently address my jaw and realized I really new nothing about it. Thanks so much for excellent coverage of what this Bendy Body needs to know to take better care of my jaw.

[@bendybodiespodcast]

Thank you so much! We hope you're able to find some ways to manage your jaw problems.

[@bendybodiespodcast]

ps. You may also find the below episode helpful. If you are able to write a review, that would be so very appreciated! www.bendybodiespodcast.com/52-unlocking-jaw-pain-with-leslie-russek-dpt-phd/

[@giamora9001]

Wow! Twenty years after dislocating (subluxing) and crushing the disc in my jaw, this conversation blew my mind! Not only am I hypermobile, but I was in a bad car accident at age 14 (hormones!!) where I chipped my front teeth and my jaw problems began. Five years later, I was having surgery to repair severe damage caused by -- wait for it -- smiling. Had any of the dozens and dozens of providers I've seen over the years knew anything about hypermobility, I might not have had to wait until my 30s before my hEDS diagnosis. I was also grateful that Dr. Robinson-Smith didn't just cry Botox and walk away from the conversation, which is all the doctors here in LA have suggested for me. I also experience a lot of pain and discomfort in my upper teeth. In my dreams, I rip them out or wedge spacers in between them to relieve the incessant pressure that, yes, I try to ignore all day long. Remembering that my teeth are all held in ligaments that are likely inflamed and more mobile than other people's makes such sense. Thank you for this important episode, Drs. Bluestein and Robinson-Smith!

[@hypermobilitymd]

Thank you so much for the detailed feedback and kind remarks. I am so sorry to hear of your struggles. Sadly, smiling and laughing have been one of the most painful things for me over the past 5 years or so. I am so glad you found the episode helpful and hope you enjoy the other episodes as well!

[@giamora9001]

@@hypermobilitymd Love the other episodes and am wearing my LadyLumbo (mentioned in Ep. 73) as I type!! Your content is INVALUABLE for us bendy bodies. :)

[@hypermobilitymd]

@@giamora9001 that is so great to hear. @Bauerfeind has so many great products so I am glad the LadyLumbo worked for you!

[@bendybodiespodcast]

@@giamora9001 aww thank you so much for the kind words. You might find this episode helpful also. www.bendybodiespodcast.com/52-unlocking-jaw-pain-with-leslie-russek-dpt-phd/

[@charlottestandage2765]

I panick a lot when my jaw gets stuck open. I use heated wheat bag which helps to relax the muscles and eventually it goes back into place. Im now diagnosed witb hEDS. But when i bought this up with my GP he didn't believe me that my jaw subluxates...even though you can adibly hear it clunking open and closed! Thank you for sharing this.

[@bendybodiespodcast]

You are most welcome. I am so sorry you have experienced open locking as that is such a terrible complication. Thank you so much for your comment and you may find this episode helpful also. www.bendybodiespodcast.com/52-unlocking-jaw-pain-with-leslie-russek-dpt-phd/

[@mollyfree]

Thank you so much for this! It is SO HELPFUL to think of the jaw as just another joint. I lately have been noticing clunking (not just clicking) in my jaw, including sometimes very strong pain as it clunks, and it seems my jaw has shifted out of alignment horizontally? my intuition tells me this has something to do with my mouth guard and being on my left side 8 hours every night, but i'm not sure. in any case, this info feels very helpful and relevant to what's going on with me. One question: is tooth pain (that can't be attributed to infection or anything else) also common with hEDS patients? Or is that something else?

[@bendybodiespodcast]

Tooth pain is very common in those with jaw problems and jaw problems are very common in those with joint hypermobility. There is a type of Ehlers-Danlos Syndromes that specifically affects the teeth but I don't know of any studies looking at isolated tooth pain in EDS. I hope that helps

[@mollyfree]

@@bendybodiespodcast Thank you! It does.

[@SweetiePieTweety]

OK I think I’m gonna start my humming to heal protocol I’ve actually done that in the past and didn’t realize I had worked I thought it was something to do with breathing but it’s actually potentially job position and that makes so much sense and I hum because I can never remember the words to songs but I love music and I love to sing so I’m just gonna hunt my way to health and happiness thank you for this❤❤❤

[@bendybodiespodcast]

Best of luck to you! Thank you for the comment and we hope you find the humming helpful!