Group for EDS and/or autonomic disorders

Hello cdammen, I too have been told in last few years I have EDS and have osteoarthritis in several places. Have had my big toe joint fused and need the other done due to too much flexibility in the joints. Had left hip replacement and need other one done. Much complications since hip replacement in July 2015. I would simply like some answers and solutions for this painful condition they call hEds.

@tamsue69 I am with you Tamsue. I have had 2 shoulder replacements and a revision, one foot rebuilt, bunion surgery that failed and toes fused. The autonomic issues that affect my cardiovascular, nervous, and gastric systems are the issues I want most to understand given their critical nature. Adrenal may be in there too. I got a book, called Disjointed, and am making my way through that.

https://counterstrain.com/healthcare-professionals/
I have hEDS. It’s completely unbelievable how this condition has been ignored and it’s the most basic aspect of the body, connective tissue. No wonder it manifests in so many different ways. I got tired of not knowing what was causing all my difficulties and at 64 started doing the research myself. I’m 68 and still am so disappointed in the medical community in helping so many of us suffering with hEDS.

The thing that has helped me significantly is a specific type of PT.
It’s much, much more comprehensive then a PT who has taken a weekend course of Fascia. That is not a criticism, just a fact.
Since connective tissue seems to be the, or a, major common denominator with EDS,
a focus on dysfunctional fascia seems to be a worthy effort. That’s where the FCS therapists are heroic. I hope Mayo Clinic responds wholeheartedly with providing this kind of intervention and really looking at what this methodology has figured out. I’m 68 and this is the one thing that’s helped me the most.

Recently I found a PA who has hEDS. She was put through the medical ringer with multiple surgeries etc.. She found FCS (Fascial Counter Strain). You can hear storys like this on a podcast called
THE COUNTER STRAIN MOVEMENT.
Listening will help you but getting an appointment with one of these therapists can help significantly.
I hope the same for all of you.

There are so many people suffering. I hope Mayo Clinic can really make a difference.
Having this public forum is really a generous effort in helping the communities on all sides of the fence communicate. Really that’s what is needed. Answer are out there, now the efforts need to listen.

I cannot believe I have run across this topic. I recently learned of hEDS and upon extensive research realized I have had this since childhood, and evidently my dad did also. Although he is long deceased, looking back, we shared the weird phenomena of double joints in our hands, arms, knees and folding ankles. We also shared an extreme bone chilling cold even when it was hot outside. I also have the stretchy skin although mine does not pull out as far as some of the pictures I have seen. My ankles were so bad about folding over when I was a kid, and they just said it was weak ankles. Now that I am 74, I am experiencing more joint issues with my knees and one shoulder. They just slide out of joint when I barely move the wrong way. It is excruciating until I can get them popped back in with much help. The first time my knee slipped out, I thought I was going to have to call an ambulance because I could not even stand on it much less walk. I am also experiencing more issues with my jaws when I have dental work. My PA has recommended a referral to a specialist in Dallas, and although it is not close by, I am considering it. I do not know that anything can be done except addressing each issue as it comes up, but I would like to know more, and I understand it can be an issue with certain types of surgery and that I would at least need to let the surgeon know of possible complications. I am also not sure if my gastrointestinal issues are related. There is a lot to explore, but it is also nice to find out that many of my lifelong issues may actually fall under one diagnosis umbrella.

@lmayo I am 71 and feeling the effect, too, of lifelong EDS just diagnosed. There is a good book on hEDS called , Disjointed, that I am reading with fairly technical but still approachable medical info. The EDS Society is another good resource. I feel your pain regarding the joint issues and flat feet.

Here’s another vote for
Facial Counter Strain as “the” best type of PT for EDS.
https://ehlersdanlosnews.com/columns/my-latest-eds-pain-flare-felt-different-best-way/

@lynne123 are you by any chance in the Twin Cities. I might try this but I am unsure where to go.

https://counterstrain.com/
Use the above clinic and practitioner search.
I’m not in Twin Cities.
I hope you can work it out!