A Physical Therapist was actually who first brought EDS to my attention! It's unfortunate how many medical professionals, including specialists, that I've had to educate about EDS. I hope that one day, this condition will be more easily recognized and diagnosed

Thank you!

It really does! I'll have to get one made soon! :)

I'm sorry that they are all struggling so much. One of the best things I've learned to do is to try to treat what is causing the pain, instead of the pain itself. It might be difficult to find a Physical Therapist in your area that has experience with EDS or hypermobility, but it is so worth it. Keeping the stabilizing muscles in my body strong has made a world of difference in for my joints. It's a bit long to explain in a comment, but basically, in a hypermobile body, the muscles try to pick up the slack from the tendons and ligaments. The stronger the stabilizing muscles are, the more they can compensate for the weakness of the tendons and ligaments. Staying active has honestly changed my life. I still suffer from a lot of the issues your children do, but I've noticed it's easier for me to walk now without my hip randomly popping out of place, I don't have quite as many sleep injuries, and I've developed a lot better sense of balance, resulting in less injuries from tripping/falling. It's hard having a lifelong invisible illness, but it makes it easier when there is someone supporting, advocating, and looking out for your best interests. I'm glad your children have you in their corner ❤️

Try a rheumatologist. They usually are the ones who accidentally end up diagnosing eds. It’s worth a shot. Here in Minnesota the Mayo-Clinic has only 2 docs that travel to Minneapolis and St. Paul for eds issues.

You're welcome!

Thank you, I greatly appreciate your support and encouragement ❤️

EDS can be so hard in so many ways beyond the physical aspects of the condition. We are definitely warriors in our own right! Thank you for your support, for commenting, and watching!

It's so hard knowing that the tasks we are gifted at and/or enjoy doing, are slowly taking away aspects of our lives. I adore homesteading, and all of the very physically demanding attributes of it. I also love doing home improvements and doing smallish remodeling jobs for others. Having EDS makes most aspects of life 10 times harder. I hope with your guidance and support your children are able to navigate these murky waters easier. I wish you many days of minimal pain and discomfort ❤️

That's awesome! My knees definitely regret a lot of my life choices, but it was quite a lot of fun lol

You're welcome! I'm glad my story was able to help ❤️

I don't have any sort of lung or asthma issues to my knowledge. I am pretty sensitive to air pollution, though. I struggle pretty hard to breathe in/near cities, and they don't have to be big cities lol. I'm also quite sensitive to fragrances. As I've gotten older, I've noticed that I've become more sensitive to things.

@@storybrookefamilyfarm It's progressive. I'm 56 now and everything is much worse. But keeping a positive attitude is key. The good news is that we age better than other folks, lol. I always say that hEDS is having the flexibility of a contortionist with the joints of a 200-year-old person. My lung issues are much worse and my irregular heartbeat seems to be the normal rhythm now. I use a lot of natural remedies and I've been adding lemon grass oil (food grade) to body lotion and believe (according to my use) that it has decreased my pain. I also use red light therapy. Have you tried any natural remedies?

@fractalflowers I use meditation quite frequently to keep my pain levels more tolerable. It's also key to helping me maintain my mental health and a positive attitude about life. I've found that when I do things that set my soul on fire, I seem to experience less of the misery that EDS creates

You're welcome!

Thank you, and I'm glad to have you following along in our journey! :)

Thank you for your comment! When I have joints that are really acting up, I do put braces on before bed to try to immobilize them so I avoid injury. A ton of my injuries come from tossing and turning throughout the night, but it feels terribly uncomfortable to brace up just to go to sleep. I know my pain tolerance is abnormally high. I'm not sure if it's due to living in constant chronic pain, or if it's due to ASD, but either way, I am grateful that my senses don't allow me to properly access how much pain I'm in. My brain just reads my base level of pain as being 'uncomfortable'. Thankfully, I am married to someone who understands the level of discomfort I am in when I say I'm uncomfortable. She's made a world of difference with helping me cope with this disorder and with understanding that my brain processes pain differently

Thank you

That's comical!

Thank you, I'm glad you enjoyed it!

Thank you for your comment ❤️

If you don't mind me asking, what type of doctor evaluated/diagnosed you with the cervical instability? I have a lot of hypmobility issues in my neck, but I'm not sure what type of doctor I should seek a referral for. I hope you have many low pain level days :)

@@storybrookefamilyfarmneurosurgeon

@@storybrookefamilyfarm what is hyper mobile eds complications,, is hyper mobile not affected heart and oragan

@partharoy6077 for most people, their organs are not negatively impacted by hEDS. The most common complication is a lot of joint pain and dysfunction. Some people have a lot of issues with their autonomic nervous system, which is the part of the body that regulates things we don't think about controlling, like adjusting blood pressure when you stand up, maintaining body temperature, etc. Other types of EDS have other organ involvement as a more common features, like severe eye issues, heart issues, vein/artery issues, etc. For more information, I recommend reading articles that the Ehlers Danlos Society has put out online.

@@storybrookefamilyfarm thank you for sharing

Anything is possible lol

I'm not sure how you judge the severity of my condition from a brief video. In several videos, I talk at length about the ways I've been and continue to struggle dealing with all of the complications, complexities, and comorbidies that come along with EDS. I try to always look on the bright side of life and not focus on my limitations, because if I don't do that, life feels very hard to cope with. I've spent years slowly building up my strength and stamina so I can live my life in a way that brings me joy. Unfortunately, there is still a significant degree of pain and joint damage that inevitably occurs from living this way, but my life is filled with happiness, peace and joy, and for me, it makes it worth the pain.