Intelligent Exercise-How You Can Take Control with EDS

[@joyarmidamusic]

I can't believe it's taken me this long to find someone explain this all to me correctly. Thank you SO much. I live in Pittsburgh and no PT here knows anything about EDS so I've given up. But I'm going to use what you laid out here and try out my own regimen.

[@erinmac4144]

And perhaps open to watching this video

[@susanthomson3861]

I found this through your article on medium.com. Thank you so much for sharing it, it’s really helped my understanding of what it going on in my body and why trying to exercise like everyone else ends in pain.

[@kdelka81]

I don't even expect them to know about EDS specifically, but they should understand hypermobility and the lax ligaments and how that would obviously guide the approach to treatment. For example, not expecting a pt to so an exercise one way when doing it that way would cause another joint to be unprotected. The base knowledge is already there, but its like they don't know how to apply that knowledge. So if they start to give me an exercise and I say, ok but that's going to hurt this joint, like believe me? Apply your knowledge and see that when im saying something is causing pain, look at it logically and realize it makes sense what im saying.

[@andreajulian2468]

love the rubber band and coil visual! perfect

[@daves9355]

From a JHS-er...let me say this is a brilliant presentation. A physical therapist that knows EDS is extremely rare. If you could blast email this to every physical therapist in the country you'd be doing alot of JHS/EDS people alot of good.

[@kathydobbs9850]

YOu know what really annoys me...EDSers that have acess to this video haven't watched it. It is the most valuable info ever. EDS isn't rare but misdiagnosed. Anyone with more than normal range of motion or flexibitity should be assessed for hypermobility and futher for what type of Hypermobile Sprectrum disorder or EDS. It is important because there is so muc more than just hypermobilty

[@kathydobbs9850]

EDS is not extremely rare...it is underdiagnosed. Please read the info provided by the EDS society that explains hypermobility, HSD and EDS. The term JHS no longer exists.

[@daves9355]

Kathy Dobbs Right. I just said a therapist that knows how to deal with it IS extremely rare.

[@kathydobbs9850]

DAve I am not able to find the info on this video in any literature and have typed my own breif explanation. If you find any please let me know. I am trying to spread the awareness of EDS...I think May is it's month. All medicals should be aware of this info.Please do not refer to JHS as being EDS(they aren't)..Thanks.

[@daves9355]

Kathy Dobbs I think you misunderstood my post on two points. I never said EDS is rare. Rather therapist that have knowledge on how to deal with it is rare. Second I never said JHS and EDS are the exact same thing. However both groups or anyone with widespread instability of their joints would benefit from the recommendations in the video.

[@MissSkittlezRawr]

Thanks so much for this. I was diagnosed with JHS this week and watched your entire presentation. I wrote pages of notes.

[@nickelleheuring6796]

Thank you SO MUCH for this! This was incredibly helpful, and motivating.

[@elm162]

This was so informative and explained so clearly with images. An excellent presentation

[@thevictorianconservative1093]

Gotta say, exercising and working out with EDS is like playing a game on the most extreme difficulty as opposed to everyone on medium or even hard.... it's both informative and depressing to see this as an EDSer, especially as impatient as I am when it comes to seeing results and how easy it can be to backslide. 😭😭😭

[@aliciadishman]

I want to thank you. This was excellent and I felt you were speaking to me. I wish to have a PT that will listen to this. I want a doctor to listen to this. I have only had one health care provider accept an EDS pamphlet in gosh, i dunno, 20 yrs? I cannot move to Baltimore MD as that is not conducive to my health or mental welfare. One echo cardiologist asked about the tiny ancient article they had from a medical journal elaborated on andthatwasin Maryland. I now live in my hometown of Charleston WV. I came here in case i didn't survive cancer so to make it easier on my family. (1) My problem(s)/question is how can I encourage my multiple "ologists" to, at the very extreme least, be willing to listen to this? Most every malady I have these multiple care providers "treat" or diagnose" are covered to a degree in this video as I have hypermobile EDS. Most DX are actually due to EDS or are a direct result thereof.(2) Due to double massectomy without PT (!?Medicare/Medicaid!?), flares in my EDS symptoms can be directly attributed to their not recognizing that EDS would need explored a bit for the after affects of removing tissue, lymph nodes and causing the loss of feeling where there is dysfunction. Therfore, my second question is, how can I get the message across to my Oncologist that I need a specific PT order addressing what the surgery did/does to an EDS patient and what the complications can be because of both? I do know I need it. I do know that there are not personnel versed in EDS. My oncologist did not perform my surgery and I do not reside any where near where the surgery occurred. He would write the order but wouldn't know what or why. PT might look up EDS and Dbl Massectomy but not tie the two together or correctly so I think the order must have some specificity (?). My last PT here, in the pool (where I am most comfortable), resulted in increased dysfunction in my lower extremities while trying to stabilize my c-spine as the intensity increased. I imagine you know it was due to instability in lower extremities and being in water! So they recommended I take a break. Instead of coming up with a plan to get another referral to continue onto land or to appeal to Medicare and Medicaid that I cannot reach the lofty goals of a "normal" regime in the first place I believe the normal progression injured and/or exasperated present dysfunction. I do not blame the PT or the referring Physician. It is as indicated above, lack of information and/or experience. Thank you for tolerating run on sentences and elaborating a bit.

[@kathydobbs9850]

If you refer to thte EDS society they have a lot of info you can give to others. I've done a lot on line . Do you belong to any fb groups? They also sometimes have good sources. REmember that usually journals and articles are not really evidence or proof. When I can I will let you know of one article that does give a lot of info about hypermobility with EDS. It is EDS awarreness month in May. I hope to compile some info for our small town clinic doc's and PT's.

[@christinagiannaros9817]

This is great, thank you, related to all of it.

[@oddwoodpecker3861]

what a fantastic video thank you! I have been seeing physios for many years and I have never been given any of this information! so informative and easy to put into practice. quick question should I focus on strengthening one area at a time or should I be doing all off these together? how much of each would you reccomended? thank you

[@vynedvyne59]

Brilliance ❤

[@DeniseTG13]

Not everybody with h EDS has propreoception decreased, mine in fact is the opposite and am hyper aware as are some others I know with hypermobility and that hyper awareness has helped them be elite athletes...

[@KimKozak]

This comment is an aha moment for me, such that I can't really explain the impact of it on how I'll manage this with my PT. Thanks for having made it.

[@zehisap8883]

I thought there were going to be questions answered at the end? 🤔

[@TheEhlersDanlosSociety]

There was insufficient privacy for the questions to be included on KZbin.

[@cookingcrazy8886]

Has anybody found a type of exercise to be least hurtful? I was doing crossfit, never understood why it hurt so much, now I want to keep my activity and muscles but can see that repeat pain isn't good. Would asana yoga (flow, not intentionally stretchy), or Zumba be okay? Those are other favorites of mine. I'm used to ignoring pain so not sure what is really okay.

[@danieladelafuente6839]

I'd suggest traditional weight training if you enjoyed that part of crossfit!

[@maedaeburning]

What are the shoulder exercises called?

[@kathydobbs9850]

I can't believe Kevin Muldowney is not using the info on this video and published a book for a theory/methodology he invented. It bothers me that his believers follow his portocol instead of using this info to know what exercises should be done They are missing out of activating the stabilzers thinking other body parts need to be stabilized first..

[@albigalloway4481]

Who is Kevin Muldowney...he has a video on theory/methodology book? Sorry I am researching this as a patient with severe EDS hypermobility....so the above video is best?

[@kathydobbs9850]

the above video is an accurate explanation of our hypermobility provided by the international EDS society. Keven has used his interpretation of how things work, and how our hypermobility should be addressed using his protocol. Unfortunately, PT's do not realize that when they do their research about EDS hypermobliity.believing his method of treatment.

[@primalslack]

Not all EDS is the hypermobility type

[@mysnellvilleblog]

primalslack Correct. rarediseases.org gives info in the other types. But Hypermobility is the most common.

[@kathydobbs9850]

If you look at the classifications hypermobility is common. This applys to all hypemobility..not just to EDS.

[@kathydobbs9850]

What clasification of EDS doesn't have hypermobility? WE all do!

[@OoMASEoO]

In all these eds videos I am surprised nutrition is never mentioned. It would make sense to just mention, " hey, try to avoid these inflammation causing foods," but what do I know? I would think collagen supplements would also be part of the regimine. But eh, there's no cure, right, no use in trying alternative methods.

[@TheEhlersDanlosSociety]

From the 2017 EDS Global Learning Conference in September, Dr. Heidi Collins' presentation slides from her talk “Diet & Supplementation for Persons with Ehlers-Danlos Syndrome - EDS You are NOT what you eat” are already available from www.ehlers-danlos.com/2017-eds-global-conference/; the video is in line to be released later this month.

[@tinafrench7281]

Also, it’s not a lack of collagen. Our collagen is malformed.

[@heatherlee-softsongsforhar4105]

Taking collagen supplements does not help because our bodies do not process collagen correctly - that's the problem. However, the Cusack Protocol is a group of supplements that has been found to help many of the EDS symptoms. Lots of EDS folks doing those, as well as anti-inflammatory and low histamine diets. It's a multi-systems approach, not either/or.

[@siscarolmpeace415]

Green and white print is too difficult to read. Sorry.