← Return to Gastrointestinal Concerns for EDS Patients

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@emo

You're welcome. Yes, what gets me so down is that it feels impossible for it to get better, but not because it is impossible (it's not like we've lost a limb that we can't get back), but because we either can't access treatment or there aren't providers who can or are able to try to figure something out to improve quality of life. Being told by physicians or others that GI difficulties are "normal" for whatever condition (in this case EDS, but I have POTS) is so frustrating, because it feels like a collective "shrug"! Ok, yes it's common and associated with these conditions, but now what can be done to improve it? I'm not even looking for a cure, but some improvement so the symptoms are not as limiting.

I'm trying to do my best with what I have access to; thankfully I found a pelvic PT willing to attempt to treat this, and I have a GI-trained dietician who's comfortable with Intuitive Eating (as opposed to severely restricted diets)--there are just long waits for appointments, and we're really just guessing on the best thing to do, but I'm grateful they're willing to try. All the best to you, too.

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Replies to "You're welcome. Yes, what gets me so down is that it feels impossible for it to..."

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.