A Dietician with EDS Shares Her Story with Bonnie Nasar | Finding Your Range Podcast Episode 8

[@WoolRevival]

Wow Jeannie, I completely agree with both of you! These are all of the things that I’ve learned and the way that I live. I wasn’t diagnosed with EDS until 49 yrs old. I exercised too hard and worked as a hairdresser for too long in my life. At 52, my physical limits are teaching me an entirely different way of finding comfort. It’s beyond refreshing to hear you both speak so positively and are motivated to finding realistic balance. Thank you for sharing! 🙏💕

[@JeannieDiBonHypermobility]

You are so welcome!

[@kirstietp]

Your comment makes me feel so much better and not alone. I'm a massage therapist and lifelong dancer and turning 50 in a few days. I'm quitting my livelihood because I'm now always in pain and fatigued. I believe I have hEDS but as I'm sure you know, it's incredibly difficult to get diagnosed. I'm glad you've gotten some answers and are taking care of yourself!

[@WoolRevival]

@@kirstietp I use what works, daily. 😂 it’s not giving up, but a new beginning. Best wishes to you on finding comfort and contentment. 💕

[@IanWelchel]

Really appreciate both of you guys. Your passion and dedication is a godsend and I really hope you keep up the good fight. My partner and I are just coming to the realization that she has hEDS and we are dependent on information like this as we are in the thick of the fight. This is all we have as we are still at the finding-a-doctor-that-believes-us-in-the-first-place phase. I know some of this isnt very lucrative and the likes you both are getting is bullshit, but please know that you matter and that you have both contributed to people like my partner suffering less and leading a fulfilling, more liberated life. I really appreciate you.

[@JeannieDiBonHypermobility]

We’re very happy this helped.

[@sarahb.6475]

I've been doing keto for over a year and I'm super careful what i eat. I have to be with multiple food sensitivities, celiac (I react to all grains) and what appears to be MCAS. I am very hypermobile and i suspect i have EDS and Pots. Luckily my joints aren't too bad so I'm able to exercise. And thankfully i was already in shape before i got the Pots symptoms, because without that i believe i would be in much worse condition. One thing i want to say is you really need to avoid any foods you are reacting to. That is huge. If you're eating things you are sensitive to its going to create inflammation and then you cant heal. I found an IgG test VERY helpful! I had no idea i was reacting to eggs and milk as i was eating them every day and losing weight really fast (because i was eating stuff i was reacting to). Milk actually cross reacts with wheat for many celiacs. I also have the celiac gene. Celiac can also give you leaky gut which of course leads to numerous food issues. I like to follow Dr Osbourn who is a post graduate of the American Clinical Board of Nutrition. He goes live every Monday at 6 pm central on youtube and Facebook. He'll answer your questions and he explains how the different parts of the body works along with nutrition. He focuses a lot on gluten and celiac. This past Monday he did a show on IBS. I actually find my gut issues and the MCAS harder to deal with than the joints. Of course i dont run. I do walk and hike though. Running when you have knees that hyperextend is a bad idea i think. The weird thing is as a kid i never knew there was anything odd about my joints. I had thought everyone's elbow could bend backwards. And i still cant believe that others cant lift their big toe at a 90 degree angle upwards!

[@francois3116]

Hi Sarah, same symptoms here, diagnosed with EDS and allergic to poaceas and intolerant to latex foods (they seem to interact badly with collagen). Which kind of substitutes did you find for grains, please ?

[@loryowens3028]

Great discussion. Thanks for sharing.. My pain management dr recommended ketogenic nutrition plan over anything else as the baseline even when dealing with multiple conditions. She is very well versed in eds,pots and mcas.

[@JeannieDiBonHypermobility]

Thank you - glad you enjoyed it.

[@chronic.pain.nutritionist]

Hi Lory! A plant-based ketogenic diet has been found to help reduce symptoms in some people.

[@brib1626]

Wow I loved this so much! very helpful and I had a few takeaways that I discovered which was so valuable! Could you please link your podcast? I'm having trouble finding it on apple podcasts and can't seem to find it on your website either. Thanks!

[@JeannieDiBonHypermobility]

Thank you. All the podcasts are on this channel too.

[@janeharrop7058]

This was super interesting!!! And very very informative thankyou 👏❤

[@JeannieDiBonHypermobility]

Thank you. Glad you enjoyed it.

[@cathylynnklahre4748]

Finally I have a group . A home I love you 😍💗❤ I felt so alone.

[@JeannieDiBonHypermobility]

🙏🏻

[@jillygurl0]

Hello, Thank you for this wonderful video. I have a few questions. Do you have any at home or send away testing for candida, sibo, vitamin and mineral deficiencies that you can recommend? I know for myself and many people with connective tissues disorders suffer from acid refux, lpr or gerd and also have hiatal hernias. Do you have anything you can recommend for this? I have been doing the acid watcher diet which is slowing starting to improve my acids but is increasing my joint pain and clicking and popping. So hard to find a happy balance. Also when you talk massage is there a type that you do or don’t recommend for people with instability? I’m always worried about loosening muscles that are stabilizing. Thank you both for taking the time to help us.

[@JeannieDiBonHypermobility]

Thx for watching. Bonnie is going to reply to you here.

[@chronic.pain.nutritionist]

Hi Jillygurl0! It is best to find a knowledgable physician or dietitian to help with testing because interpretation can be tricky. With hiatal hernias, it is best to discuss options with your GI doc. If surgery is not indicated, sodium alginate capsules with 8oz of water has helped a lot of my patients relieve reflux. For massage, it is best to find someone knowledgable about loose joints so they do not cause harm. Myofascial release massage seems to be very helpful to a lot of people, but the practitioner needs to know how to handle hypermobile joints.

[@katie1897]

@@chronic.pain.nutritionist when you say the massage therapist has to know how to handle hypermobile joints does that mean like not going to hard? A more gentle approach??

[@chronic.pain.nutritionist]

@@katie1897 it means being careful to release the fascia and muscles somewhat, but not too much. Remember, our joints are loose, and the muscles are tightening around the joints to protect them. If we loosen too much without strengthening, we can increase likelihood of injury. I hope this explanation helps!

[@katie1897]

I don’t believe I have EDS but I am hypermobile and I didn’t realize until after my second child and after years of de conditioning! I felt it when she said she wishes she could go back in time and say EXERCISE!!!! lol

[@JeannieDiBonHypermobility]

Yes I agree! Me too!

[@katie1897]

@@JeannieDiBonHypermobility do you have a video talking more about mast cell? How did you get diagnosed with that for example?

[@JeannieDiBonHypermobility]

Have you watched the mast cell podcast with Keeya Steel? That will help. I got diagnosed after 3 years of awful symptoms. A urologist finally saw what was going on.

[@cathylynnklahre4748]

O my I can not touch tomatoes or most citrus . It's all about balance. S soon as I think I have it than bam I be sick fir a week.

[@JeannieDiBonHypermobility]

Yes it can happen with these foods. High histamine.

[@cathylynnklahre4748]

Time and space.

[@cathylynnklahre4748]

The exhaustion of management of the condition makes me with brain fog. Now I have csf fluid with hygroma in spin.

[@JeannieDiBonHypermobility]

Sorry to hear.

[@cathylynnklahre4748]

Everything is soft tissue..Even bone