EDS, Ehlers Danlos syndrome & Fascia Therapy 🤔😳 find out what CAN be done!!
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- Опубликовано: 5 сен 2024
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I have hypermobility and only recently noticed it has
started to get worse. I STRONGLY recommend the following.
1. don't stretch because although it feels nice, you'll suffer after.
2. Try pilates that helps strengthen
3. Try closed kinetic chain exercise and cold water swimming/therapy. This has been an absolute life saver for me.
My 2 kids have hypermobility and all the knowledge I find, I'll pass to them because as fun as it is being bendy as a kid, it really isn't as an adult.
That's not actually true. You can stretch but you need someone to teach you when and how. I dislocate if I don't stretch because my body gets so tight it pulls out. My first pt was with me for 6 yrs. Great person and I did improve but he didn't know a lot about eds. My new pt has been with me for 3 yrs and I am almost human again. Stretching just needs to be taught.
Yes, Pilates!
It’s estimated that 80-90% of people with hyper mobility won’t have chronic pain or issues stemming from their lax joints.
1.Stretching is good for you, even with Eds. stretching into end range or past is what is dangerous.
2. Anything that builds core is awesome, but Pilates involves a ton of stretching so you contradicted point one
3. Cold is a huge trigger for most people with painful Eds, and cold therapy (cryo/ice baths/cold swims have shown little to no medical evidence and cold has been removed as treatment for pain (as it worsens pain in most and slows healing for all).
I appreciate you trying to help, but also want to add that up to 60% of kids present with hyper mobile joints in children but only single digit percent will not grow out of it. Don’t assume your kids are EDS or disabled because they present with “double jointedness” or hyper mobility as a child. The odds they retain it are low and odds it goes on to cause pain or issues later is almost null, so don’t stress too much about them :) I was very worried about my son but my rheumatologist quelled my fears.
Well, I've found that even w/my dislocations, etc? WARM POOL is a must! I wear a cheap dive suit in our heated pools, and I hurt EVERYWHERE. Warmth helps! Pilates starts up next week, yay! I'm super, hyperbendy, and have learned to bend not that far - but further than normal, as I've done that all my life. Building core is a must! I only use cryo, if I haven't slept for a few days, as a drastic change will keep me from being injected with horrible drugs in the hospital.
@@juliesczesny90 turns out cold water and cold packs on hurt areas is bad for your body and doesn’t improve outcomes or pain. warm soothes and brings blood to the area, speeding healing.
EDS is soooooo much more than hypermobility...
100% true
👍🏻TRUTH👍🏻
Its such a myriad of intertwined systems. For me, currently, it’s a cornucopia of PAIN 😢
You so look young and you’re being empowered with knowledge that will be so helpful!! I’m 47 and had no idea why most everyday is pain, fatigue, dizziness etc. until I KNEW. I carried five huge babies to full term, the last being twins. It’s been 18 years since and my body is showing how much that affected my everything. I wouldn’t change a thing, but I think young women should go into pregnancies with knowledge of the wear and tear of carrying a another human’s weight on our already distended abdominal wall and ligaments etc ❤ Just my experiences ❤ EDSers CAN do it- I’m a little science experiment. We just need a lil extra love and care❤
I’m not telling you specifically 😊
Just sharing in general. My twin daughters are well aware of the above 👆🏻 and have me to help guide them.
So true. It’s a cascade of symptoms unfortunately. Sending love to all those fellow 🦓 out there.
🦓Much more after 40 and don't forget co-morbidity dysautomia ore Mast Cell Activation 🦓 Ehlers Danlos awareness month 🦓
It's a short about an aspect of it. Not a 45 minute lecture
The widespread pain from EDS is a real problem for me. I am very concerned at what all the ibuprofen over the years has done to me.
Same, I'm mainlining ibuprofen for both eds and migraines (which are likely eds related), the worst for me though is the fatigue, I'm just so damn tried all the time.
@@Rat-King27 the migraines and fatigue are a real problem for my daughter. Unfortunately, my Mother’s genes are the gift that keep on giving as both my daughters and myself live with EDS and the comorbidities that come with it.
I have eds, I have such severe spinal instability that my vagus nerve is constantly triggered and therefore my autonomic nervous system wasnt working correctly until i started to get stronger. I had a port/central line for years to feed me. I am so much stronger now and my muscles do the job of stabilizing me.
So glad to hear you are doing better 🙏
Can you pls share how you got stronger? 😊
Interesting… I am trying to get tested bc this last year has been terrible and I believe
I have this… did gene testing confirm? Any advice? Happy your better!!!!
@@lifeisjusthowidream9414 sorry for the late response, I did physio. I had to do it supervised at first bc I was at risk of injuring myself. If you cant access physiotherapy, let me know, I can try to explain some of the exercises i do.
@@AntonioLiberato08 so for me it was tested clinically( meaning by symptoms). I have hEDS and that one doesn’t yet have an associated gene. I recommend going to a geneticist anyways, bc they will most likely know it. It is rare but not that rare that a gene specialist wont know it. Ultimately you should still get gene testing to rule out if you have one of the other rarer types. They almost always test to make sure that it isn’t the vascular type. and my best advice i can give you is, prepare for it to take a long time to get properly diagnosed and if you can, don’t do it all alone. Take a friend or family member with you, it is hard to get told you have a chronic illness. I promise it isn’t all bad all the time tho. I got way better with therapy as well. Working on your mental health will always help you cope better with the daily grind of being chronically ill. If you can access therapy, do it. Even just talking with someone to sort out thought and symptoms will help to stay on top of it.
The most aware I am of my hypermobility is when I’m in the car and I literally cannot control any of my movements against stops and turns and bumps in the road. My whole body flops everywhere because I have zero control over my spine and torso. And even if I start taking steps to strengthen my core, but then I stop the regimen, all the work I did immediately goes away. All I can say is thank you to whoever invented the seatbelt 😂
The seatbelt doesn’t help me. I still feel every bump, turn, etc.
Me too!
I wear a cervical collar every time I'm in a car. My upper cervical chiropractor said "good" when I told him that. I support my back too, using a back brace or a cloth to fill the gap. It is still awful but less so. I bought the cervical collar online, no prescription, adjustable with a gear up and down, and velcro straps around.
I was diagnosed with ADHD as a kid. About 2 years ago I heard about EDS and have been curious cuz it seemed a lot like my life. About an hour ago I realized I have hyper mobility and I decided to look at more videos about it and found this video. This is spot on 😂 I definitely need insurance now!
We have Facebook groups for us if you need any help and active
Look up the link and tell your psych and doctor I had to tell mine they have no clue I was diagnosed Eds at 29
The best therapy for eds are controlled articular rotations. The fascia is a symptom not a cause. You need to retrain your nervous system to regain control of your joints.
Anytype. of hands on therapy can make a person with eds dislocate . Eds is not hypermobility only. This sounds interesting hopefully it could help
Hands on? You mean Physiotherie?
Heds is the name and I dislocated due to a massage therapist
@@themovingdance2744 right shoulder popd out by evan laying on the bed, feel y
I wake up with a dislocated shoulder fairly often... I've not been diagnosed with eds but am hypermobile...
@@apdeleis yes, be careful x
I just got diagnosed! 🥴
Good luck ❤xoxo
Sorry to hear that!
Congrats!!! You likely fought very hard to be heard, understood, and acknowledged.
I was diagnosed with scoliosis, but have been going back into physical therapy over and over because my pain just moves and doesn't really get better.
I've been told by EVERY physical therapist in my clinic and ALL made comments about how hypermoble ALL my joints are when they do the mobility tests.
I mentioned EDS once to my doctor but because no one in my family is diagnosed she didn't wanna test me
I'm thinking I'll just qsk the physical therapists about it 🤔 cuz I'm so sure it's EDS I've had qll these problems my whole life
So sorry to hear that 🙏
What kind of therapy? Myself and child have EDS and all the lovely co morbidities that come with it. Much of it has to do with dysautonmia; POTS, MCAS, and I suspect it triggered my autoimmune disease (Ankylosing Spondylitis) and fibromyalgia. Thank you for sharing information on a topic so few Practioners understand.
My spine spirals and curves. Scoliosis at is finest and only getting worse, now with arthritis from top to bottom. I am curious what this video is all about……?
We also have a video specifically about scoliosis. This video is specifically about people with Ehlers Danlos syndrome.
Scoliosis can be a comorbid condition of Ehlers Danlos Syndrome.
Good video
🙏
Super interesting, I would love to help my sister with EDS. She has a lot of issues. We are based in Germany. Do you have any therapist recommendation here?
We work virtually, via zoom with clients all over the world, including Germany 🙂 if you’d like, you can click this link to schedule a free 45 minute virtual consult with us 🙏 sterlingstructuraltherapy.com/
Of cours, die EDS selbsthilfe ist eine super aufgestellte "Organisation" welche Fachärzte auflistet etc
konstante Physio (stützende Muskulatur)ist wohl das beste neben adäquater Schmerzmittelgabe & fachärztlicher Betreuung!!
Falls auch Gefäße wie bei vEDS betroffen sind unbedingt in Marvan Abulanz testen lassen, bin deswegen schon 3x fast gestorben (weil innere Organe gerissen sind)
Höre lieber nicht auf das im Video....die will nur ihren Rotz verkaufen
Waiting on a full diagnosis ( it’s a long process it seems )
This condition ( depending on the form of EDS ) is brutal on the body - my whole body has been affected by this possible condition - stretchy skin , stretch marks everywhere ( I’m super skinny so make this make sense ? ) , eyes are been affected, GI issues , joint issues , recently found out two disk in the lumbar are now compressing , jaw issues , and a heck of a lot more issues …. If this is EDS I wouldn’t wish this on anyone . ( my father had Veds . )
So sorry to hear you are dealing with that 🙏
@@Life360Summit it’s been a lifetime but I’m at that point where I can’t deal with the pain anymore . They have me on 1000mg of gabapentin and it controls the bulk of the pain now - but does nothing for the back or the pain in the eyes .
If anyone has tips on how to live with this - please share - there is no support in my town or province and only a few doctors who know about Eds . 🇨🇦 NB
St.Buddha_Brahman-Sun_of_Light they know I have the hyper mobility aspect , as for Marfan - it doesn’t fit that well .
I’m not tall , my leg and arm span is slightly over average and I do have longer fingers but still , the marfan was ruled out .
I’ve been advocating for myself for many years now and to be honest I’m running on fumes now . Just no energy left to fight .
. Kratom helps everyone I've heard of, for pain and for getting off of ill eagal meds. It is a ground up leaf usually (or extract of leaf, etc.) I don't sell it or anything. In USA, it is legal in some states and not in some.
@@susannjohnmorgan3361 😂 seriously ?
So a plant that is similar to opioids and morphine… no thanks .
The crap is just as potent and as addictive as opioids and morphine . Although I appreciate the suggestion , there is no way in hell I’m going to use that . ( plus I think it illegal in Canada but , not sure on that . )
Omg. Thats me 💯
Glad we were able to help with some information 🙏
Just wanted to add that this is just ONE type of EDS. There are around 13 different types and probably more that aren't tied to a specific gene mutation yet (I'm not really sure where the research is on this right now). And not EVERYONE who has EDS is hypermobile... because the symptoms are different for every person and like I already said, there's more than just the hypermobility type.
It is also possible for you to have several types.
I have EDS
We hope you have figured out some good strategies 🙏
What’s the difference hypermobility disorder and EDS?
EDS Is an extreme form of hyper mobility, with clear physiological markers, which can affect even one’s internal organs
Ligaments are like string and do fail support causing many systems to go awry. I was first diagnosed with FM. The muscles were over worked trying to hold the body together. Delayed big time diagnosis for H-EDS. Just a couple years ago. Now 70. My eyes, gut, head, neck, skin ...bladder...and more affected.
So idk if you reply to comments but here's my thought process...
First a question is the Hypermobility due to collagen not establishing properly? Or the body not being able to properly establish and maintain them like a degenerative disease.
Stretching seems counter intuitive although I've heard a lots of people recommend it. If you're already hyper mobile wouldn't stiffening the ligements and setting joint better logically make sense? (setting the joint I mean just tightening the soft tissue around it instead of further loooesning it)
I'd wager if you were going to traun than though it may be counter intuitive to recovery and adaptation to take anti inflammatoriez given the pain associated with this illness it would warrenty reduced benefits, and maybe even something like a topical anagelsic gel to reduce or number the pain.
I'd also wagerhan cold therapies would help a lot too, 1 as a anagelsic, 2 to reduce inflammation, 3 to stiffen the connective tissues.
I feel like isometrics would be great for this too. I used isometrics to increase my range of motion by going beyond my ROM but my rom was limited. If a person with Hypermobility can train the ROm they should have and not the ROM they have this could teach them proper rom, proper mecahncis, and strengthen the soft connective TISSUES and muscles that have been compensating
another thing would be massages. The stretching recommendation I've heard is because the muscle are compensating for the soft tissue, so they tend to shrink a bit due to misuse. I've learned that there's 3 phsycial ways to hit a muscle. Excersise, stretching, and massages-they have they're own sub categories too but those are the 3 main branches besides like rest and diet but I mean active means.
In summary to my poorly typed comment...
What causes eds?
And will my recommendation help anyone in theory logically speaking? I feel like they would, even talking to my PT he seems to know more finer details about it, but honestly as a civilian these all make sense to me.
Oh I'm not done. Would a collagen peptide power help if it contains more than just type 1 and 3 but also 2, maybe even more forms of it. Maybe even a homemade bone broth... Hmmm
I know a collagen peptides shot would have a better benefits.
Research: "Ehlers-Danlos Syndrome and the carnivore diet"
There are testimonies of people overcoming EDS through diet.
is much meat help or?
Hyper grifter scammer using trendy words
Thank you for stopping by, and taking the time to leave a brave and anonymous positive comment … wait, wait no 😉
@@Life360Summityou've never made an objective improvement in any patient who was in your care nor have your ever received an honest dollar
Ah!! The anonymous bravery goes on 👏👏👏love it!! You contribute so much 🙏
Myofascial release therapy definitely helps.. EDS with 3 major spine injuries and my body being stuck in the trauma response for 5 yrs thanks to that nervous system malfunction and the fascia that thickens from the injuries. If you've ever been in that state of hell.. offing yourself is literally the only pain management that works. Kinda hard to bypass the response when your fascia is hardwired into your nervous system. It helps, and I hope for your sake you never have to experience it. I'd take my open back invasive surgeries daily with no pain meds over that kind of pain. Good luck sleeping or having your autonomic responses functioning properly if you are locked in spasms that are trying to rip themselves off the bones. This helps, as does vagus nerve stimulation. Benzos are the only other thing that helps, and you have to be suicidal before you get those thanks to the drug addicts.
Hot prop. 🥵
LOL!!