Just got diagnosed with hEDS!

Good evening, y'all! I just got a final hEDS diagnosis this morning. I'm pretty much already on a regiment that one with the diagnosis would receive. But, as we all know, having the actual diagnosis can change so many things in & out of the Drs office! & for that, I feel so blessed! I can't wait to connect. I've been having a bit of a rough patch here lately... & it's pretty hard to get me down! God bless you all! 🙏🏽🥰🫡🤗🫶🏽

Your answer

TattsCatsNaps

1y ago

So happy for you! It can honestly feel like a weight is lifted can’t it 💕 ❤️

TINAMARIE85

1y ago

I've found that drinking some mineral oil & making sure that my constipation/impactions don't back up back-to-back (like they usually do) really helps with my GERD & SNUFFLEUPAGUS issues (that's what I call my esophagus 😆). Plus, I have LACTOSE & as a backup, LUBIPROSTONE! 😉🙏🏽

TINAMARIE85

1y ago

I'll look that up right now, thanks! & Yeah, I'm not able to take steroids anymore due to my Adrenocortical Insufficiency... 🥺😭😭😭☹️ It used to be I could take a Prednisone taper pack & it would really help jump start me OUT of a flare-up. 😞😞😞 Thanks for that suggestion. 🙏🏽

CriCri

1y ago

no worries! Let me know how you get on. I am having gastric issues with anti inflammatory meds and even the omeprazole that protects the stomach so I'm at a loss and desperately looking for natural medicine that will help. Only at the beginning of the Cusack Protocol but I'm keeping hopeful since so many people's lives in that group have been changed by it...there are so many supplements you can integrate based on your symptoms which I think is great

CriCri

1y ago

So happy for you🙏 I'm just starting the Cusack Protocol, if you haven't heard of it look it up! I've been having a terrible flare up since getting Covid a month ago...the pain in my joints is unbelievable like the worst flare up I've ever had. My physio suggested steroids but sticking to diclofenac and pain relief seems to be helping

Abbe

1y ago

So happy for you!!

TINAMARIE85

1y ago

🤗🤗🤗 Thank you! It feels so good to be seen! The amazing thing is my PCP figured it out! He didn't give up on me, gave me extra time in our appointments... He's a regular 'Dr. House ' that guy! 🙌🏽🙌🏽🙌🏽🙌🏽🙋🏽‍♀️🥰👨‍⚕️

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