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Gastrointestinal Concerns for EDS Patients Jun 26, 2023 | By Samantha Campbell (@samanthacmaa)
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@momcooker

Hi. You have such wonderful information. Supposedly my Drs. here in TN know EDS however they don't seem to know how to improve anything including, of course, the bloating and distention. I bought the book you suggested and will bring up also the Pelvic physiothereapy and also look for a GI trained diatician who knows EDS. That all makes great sense to me but it won't be easy finding them. For exercise, I found Staibity Flow which is yoga specially directed at HEDS and EDS. Instead of the focus on flexibility they focus on muscles and strength. I may try that since my routines usually end up hurting me. Well, good luck in your treatment and please keep me updated. I will do the same.

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Replies to "Hi. You have such wonderful information. Supposedly my Drs. here in TN know EDS however they..."
movingforward33 | @movingforward33 | Jun 26, 2023

Another excellent movement option specific for hEDS/HSD/EDS is The Zebra Club (thezebra.club) (website and app)

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emo | @emo | Jun 26, 2023

Hi @momcooker - Thank you so much for saying that. I'm sorry for the delayed reply, but it lifted my heart to know you it might help you. Chronic pain is so hard and isolating. I do really hope it helps. It can be pretty tough to find a GI dietician, but there are more who do telehealth now and can sometimes practice out of state. The RD I work with does telehealth with out of state clients. If you like, I can DM you her information. The thing is, she's an intuitive eating/health at every size dietician, and I know that's not necessarily everyone's cup of tea.

I also saw the post about Stability Flow. Have you tried it out yet? I saw she offers a free trial. I really enjoy yoga and Pilates--there are a lot of Pilates-trained instructors and PTs with good recommendations for EDS. Many of them even have EDS themselves. With yoga, I gravitate more toward mindful and not necessarily strength-based movement, but it's because with my chronic pain I'm not up to lengthier strength-based classes yet.

Good luck to you too with your treatment, and here's to moving forward, no matter what that looks like.

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