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@HeatherBelling
@HeatherBelling 28 күн бұрын
Is it possible for someone (with no preexisting hypermobility disorder) with AAI that developed after a car accident and after si joint instability went undiagnosed and untreated first, which led to my whole spine trying to compensate and developed new turns and rotations all the way up to my latest spinal instability diagnosis of the C1/C2 subluxation- to be able to heal without c1/c2 fusion surgery, if the si joint becomes stabilized finally? I have all of the symptoms you have brought up in this video, and more. I am experiencing vomiting chronically now, and another thing you didn't mention that I wonder about being related to this or not- my shoulders seem to be facing different directions and I developed thoracic kyphosis and scapula winging on my left side only. Also diagnosed with thoracic levoconvex scoliosis... also akin to how ppl with CCI often feel that their head is too heavy to hold up and feels like a bobble head, I have felt like my head and shoulders are all too heavy to hold up against gravity and I often hold my head literally with both hands when I am upright and needing to stay upright as long as possible
@HeatherBelling
@HeatherBelling 28 күн бұрын
You know what's sad? Even when there was a bad accident and the imaging does reflect severe malalignment- doctors STILL DO NOTHING! I've wasted so much money and time and precious (severely limited) energy trying to get help and I've only gotten worse physically for trying.. I'm severe like you, bedbound and at the point now of vomiting and other extremely disabling and scary symptoms happening after any attempts at going vertical 😢
@HeatherBelling
@HeatherBelling 28 күн бұрын
Excellent info, thank you! Curious: have you seen many ppl with CCI or AAI who ALSO have si joint instability? That form and force closure bit is exactly what I have learned about my si joints and why my pelvis is unstable. in my case, I believe my problems started with the dysfunctional si joints then progressed to develop atlantoaxial instability in addition to developing "functional scoliosis" and just extremely unstable spine bc it feels like my spine started turning and rotating to try to compensate for my completely unstable and torsioned sacrum and si joints. in fact even my imaging reflects my hypothesis that my pelvis instability predated my atlantoaxial instability. Tho it didn't take long to become severe in my case. I can't bear being upright without suffering a lot of pain and all the dysautonomia symptoms, then soon come all the awful symptoms from the compression of my cranial nerves and brain stem. I've been living a life literally mostly always supine for 3 years now.. still desperately seeking proper treatment. ~ in Michigan
@anjelapatnaik
@anjelapatnaik Ай бұрын
Is there a video just with the exercises it's hard to
@levisanimations9872
@levisanimations9872 Ай бұрын
My problem knuckles are the ones closest to my nail, would I just put the second piece of tape towards that area instead?
@hEDSRehab
@hEDSRehab Ай бұрын
Hi, Yes you could definitely do this. I also try and keep my hands in a crab claw shape when downing all the exercises so that none of the joints are allowed to drop down.X
@RynKalos
@RynKalos 2 ай бұрын
You're the only one creating reformer videos for hEDS. Thank you!
@hEDSRehab
@hEDSRehab 2 ай бұрын
HI, Thank you for the comment. I will make sure I do more reformer videos in the future.
@JuliaLindsey-f2u
@JuliaLindsey-f2u 3 ай бұрын
Curious as to why son has these tight muscles... can it be just from growing? He is 11..
@hEDSRehab
@hEDSRehab 3 ай бұрын
Hi Julia, There are a lot of reasons people can have tight calf muscles. Growing is definitely one of them. In children bones grow before muscles and nerves so they can have tightness while the muscles and nerves catch up with the growth of the bones. The good thing about METS is they are totally safe so he can do them without worry. If they don’t work it will simply be the reason is something else like as you say growing.
@josefajosefa00
@josefajosefa00 4 ай бұрын
Very useful. Thanks.
@suzylogan3524
@suzylogan3524 5 ай бұрын
So glad I’ve found you. I’m a yoga teacher researching hyper mobility as I’m supporting my daughter whose recently diagnosed. Your Chanel is going to be so helpful.
@MyRandomExistence
@MyRandomExistence 5 ай бұрын
This is fantastic, would you consider making a progressive reformer routine for heds?
@iwasboredwoo
@iwasboredwoo 7 ай бұрын
Thank you so much for posting this ❤ my hip flexor musclea are so insanely tight
@hEDSRehab
@hEDSRehab 7 ай бұрын
Glad to help! 🙂
@lilypad8922
@lilypad8922 7 ай бұрын
THANK YOU!!!!! My foot doctor told me to stretch for plantar fasciitis, but I eventually realized this was making me worse. You are literally the only person who has validated that. Are there any braces that could be worn to do something simlar to the tape?
@hEDSRehab
@hEDSRehab 7 ай бұрын
Hello! I'm unaware of any braces that can replicate the effects of taping. If you don't mind me asking, are you allergic to kinesiology tape? An orthotic with a deep heel cup, which helps bring the calcaneus (heel bone) forward, would help but would probably need to be specially made. I have some other videos on ankle mobilisation exercises that would work well alongside toe exercises. These exercises target the muscles that connect to the toes and help stabilise the heel bone. I'll do my best to create a detailed video explaining everything and have it posted by next week.
@staceypollack808
@staceypollack808 8 ай бұрын
I apparently had injury to the tectorial membrane which was said by a very known chiro (dr Scott rosa) that there is scarring there. What do you do in that case? Strengthen the sub occipitals to compensate ? The problem is can you strengthen them when they are always tight ? I’m in Canada 5 years been like this. No one can help me thanks
@AlexinaAnatole
@AlexinaAnatole 8 ай бұрын
Hi Bonnie, HDS-er here! Been having persistent issues with shoulder pain on and off for last 18 months or so. Was having a recent episode and did this series and, unless it was a complete coincidence, the pain completely resolved itself. Will now be doing this at least weekly for maintenance. Thanks so much, only just discovered your channel and finding it extremely useful.
@hEDSRehab
@hEDSRehab 7 ай бұрын
Hi, I am so pleased you have found these exercises useful, it is wonderful to hear they are helping.
@apucterio
@apucterio 8 ай бұрын
Putting weights over your head like thera bands / weights, kind of make sense as an exercise for strenght and stabilization, but at the same time I ask myself why we all just not heal by living our normal lives and resisting gravity 24/7, when often it's the case that we actually get worse from just living. Thoughts? Thanks!
@hEDSRehab
@hEDSRehab 8 ай бұрын
HI, Thank you for your question. The Thera band starts with the lightest band and is really more proprioceptive to begin with. The feedback I have had from my clients is that it helps them to understand how to lift up out away from gravity. it is also to help stabilise at the same time so a bit a downward pressure with upward pressure creates a closed chain and a bit of proprioceptive stability. The lift needs to come all the way down from the low back in sitting and if in supine the focus is just on the lifting of the head up off the body to help with blood flow and decompression of the brain stem.
@snikrepak
@snikrepak 8 ай бұрын
Thank you! I just got my tape today and its like a new body lmao 🤣 i have hEDS and pretty much every joint likes to do the slip and slide
@hEDSRehab
@hEDSRehab 8 ай бұрын
Thank you for your comment, very happy it helped!😊
@JohnnyTerps7
@JohnnyTerps7 8 ай бұрын
I FEEL LIKE I CAN NEVER THINK STRAIGHT CONSTANT FACE/JAW PRESSURE … HIPS AND STOMACH ALWAYS TIGHT
@nasimkhosravi2450
@nasimkhosravi2450 9 ай бұрын
The knee push tip was a game changer for me! Thanks for communicating the posture details so well.
@hEDSRehab
@hEDSRehab 9 ай бұрын
Hi, Thank you so much for your comment. I am so glad it helped.
@redbrick9634
@redbrick9634 10 ай бұрын
I'd like to see the exercises in action
@ruparkyitin
@ruparkyitin 10 ай бұрын
if eds patient had hypermobile joints plus instability and incoordination.. would it be easy to do that exercise?
@hEDSRehab
@hEDSRehab 10 ай бұрын
Hello, Thank you for your comment. Like most things some people will be fine and others may struggle. If you have tried this or are working with a client who struggles I would recommend they are seen in person or at least on line so they can be guided on a 1-1 bases. I have taught this to many clients who are hypermobile and they have been fine. It depends on the individual and what level they are at.
@hEDSRehab
@hEDSRehab 10 ай бұрын
The use of a mirror can help as well.
@ruparkyitin
@ruparkyitin 10 ай бұрын
instead of putting some weight on the head---@- how about doing upside down position. ?? that might help in increase blood supply to brain and neck muscles stronger!
@hEDSRehab
@hEDSRehab 10 ай бұрын
Hello, Thank you so much for engaging with my channel. I can tell you are a thinker. When starting the protocol with weight it is extremely light. The body weight of a person would be huge aside from actually trying to get into the position it would be way too much weight. The other reason is the aim of this is to improve overall daily posture, to encourage proprioception, and to axial lengthen the cervical spine. The occipital muscles and something called the tectorial membrane feed into the dura of the spinal cord and brain and are believed to help actually stabilise the spinal cord. This will happen only by learning how to hold the head off of C1, so it is a functional exercise. I hope this helps you understand a bit better. Good thoughts though.
@Ladeekap
@Ladeekap 2 ай бұрын
@@hEDSRehabI’ve tried to use an inversion table . The pressure it puts on the head is horrible . I get a migraine almost instantly if I use one.
@Raj-ul9my
@Raj-ul9my 10 ай бұрын
U have not spoken about how to treat the underlying cause of this debilitating condition for patients, not just to symptom treat so more drug companies can sell their drugs repeatedly. Its called regenerative medicine, which makes new collagen and new and stronger tissue using PRP or stem cells in the specific ligaments thats causing CCI. Your stuck in old literature, its 2023 now
@brieonic
@brieonic 10 ай бұрын
Thanks again for your wonderful videos. I've now bought a pilates reformer for home! It's really so much more accessible for us hypermobiles and POTS sufferers.
@hEDSRehab
@hEDSRehab 10 ай бұрын
Hi, thank you for the very kind feedback. The Pilates reformer is a game changer. Enjoy getting strong!
@scarpru
@scarpru 11 ай бұрын
Ohmygosh this is why orthotics never help me. It just puts more pressure on that bone and hurt like crazy! I need help with my tibia and hips before an orthotic support will do any good! Sheesh!
@brieonic
@brieonic 11 ай бұрын
Your content has really helped me to understand why some excercises work for me and why some don't, and why specfic excercises in yoga and work out classes have led me to think have led me to think that "classes don't work for me" and how to communicate with my own therapists as a result.
@hEDSRehab
@hEDSRehab 11 ай бұрын
Hi, I am so pleased you are finding my videos helpful it makes it all worth it! X
@brieonic
@brieonic 11 ай бұрын
This is so excellent, thanks for sharing. I'll be sharing it with my physio and chiro.
@NADA-ok2ce
@NADA-ok2ce Жыл бұрын
Again! Incredible! Please do more
@NADA-ok2ce
@NADA-ok2ce Жыл бұрын
This was an incredible break down of knee stretches from feeling. Thank you.
@hEDSRehab
@hEDSRehab 11 ай бұрын
Thank you Nada, I am so glad you are enjoying the videos! X
@EriKantGame
@EriKantGame Жыл бұрын
Thank you so much for this. I tried it for the first time today and had an INSTANT 80% reduction in foot + ankle pain after years of trying to stretch and exercise it away.
@csell871
@csell871 Жыл бұрын
Hi Bonnie, I want to run this by you. I have C5 - C7 fused 9 years ago. In July while golfing I had something happened that is giving me symptoms and pinching of C2 on the left side only. These include pain on the back of the head and numbness going from under my ear across the lower jaw and into my neck. When I irritate it even swallowing feels like it's changed. Turning to the right is free and easy, turning to the left is like I am pushing into something. If I don't turn much for a few weeks it seems to tighten up a bit but then I will look to the left I appear to go backwards again. I tried chiropractic and that made it worse. Do you have any recommendations for care in my situation?
@hEDSRehab
@hEDSRehab 11 ай бұрын
Hi, I am so sorry to hear you are having issues at C2. Golf is a rotational sport and AAI is a rotational issue which takes place at C1/C2. As you have already had fusions it is worth going back to your medical practitioner for an assessment. I would definitely try and avoid any manipulation as it may create more instability and muscle spasms. I would suggest trying to find an ISM physiotherapist if you can find one. They are very good at finding drivers of issues. Hope you get to the bottom of it.
@ndrasmith
@ndrasmith Жыл бұрын
What kind of bands do you use? Clinny?
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi, Yes I use Thera or canny bands. I start light and move up to stronger as I feel stronger. x
@mooninaries4397
@mooninaries4397 Жыл бұрын
I suspect i have cci and when i try to do cervical exersices for instability i stretch my neck and the pain is intence. From the scull down to the shoulderblades. Is this because my instability? I do not use any brace, do you suggest i get one? I have ME/cfs and POTS and are 70% bedridden and my energy are very limited. Almost all exercises make me ME symtom worse. Have you patients with ME?
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi this could be because your muscles are in spasm which would make stretching them very painful. A couple of other reasons could be that you are not integrating the rest of the spine so you need to think of the length coming right down from the base of your spine so you sit upright from the lumbar spine. I can do a video on this, and the last reason may be potentially that you have tethered cord which may be pulling down on the spinal cord not allowing it to move normally. Hope this helps!
@mooninaries4397
@mooninaries4397 Жыл бұрын
@@hEDSRehab Thank you so much! Would love a video!
@mrandmrsragdoll6397
@mrandmrsragdoll6397 Жыл бұрын
This works great :-)🙏🏻 Could you please suggest how to tape for cervical instability and dislocating shoulders?
@cloedster
@cloedster Жыл бұрын
Wow! Some of the best information on this topic I have come across so far! Thank you so much!!
@hEDSRehab
@hEDSRehab Жыл бұрын
I am so pleased you have found it useful. I actually have another exercise I am adding in and will definitely be doing another video in the next few monthes.
@cloedster
@cloedster Жыл бұрын
@@hEDSRehab That would be amazing! I am dealing with severe CCI and ME/CFS and have been experimenting with what I learned from your video in the last 24 hours and I can feel that finally I have found something that targets those spots where my neck needs support and training! This looks like a path where before there was none! I will be forever grateful :) Very much looking forward to your next videos on this topic!! Thank you very much.
@mrandmrsragdoll6397
@mrandmrsragdoll6397 Жыл бұрын
The second last exercise is amazing, it has made a real difference on the constant dystonic storms I experience. 🙏🏻
@hEDSRehab
@hEDSRehab Жыл бұрын
I am so pleased. It is usually about finding the right exercises for our own specific issue. Thank you for letting me know it makes doing the videos worth if if I know it is helping!
@mrandmrsragdoll6397
@mrandmrsragdoll6397 Жыл бұрын
Great information!! Thanks
@mrandmrsragdoll6397
@mrandmrsragdoll6397 Жыл бұрын
This program is very helpful. However, I struggle with the side, bending, as soon as I side, bend my shoulder and neck on the side that lengthens dislocate.
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi, Thank you for your comment. I am glad you are finding some of the exercises helpful. You could try standing on a very light thera band and holding it. Don’t have so much tension that you can pull those arms out of the socket. As you side bend feel like you are just gently pulling the band up so you activate muscles. This may help those shoulders. Or just leave that exercise for six weeks or more, continue with all the exercises that feel safe. Revisit the side bend and see if you feel more stable.
@mrandmrsragdoll6397
@mrandmrsragdoll6397 Жыл бұрын
Thank you! I will try this :-) I don’t know if you already have a video about this I haven’t looked at all of your videos yet, but I was wondering if you would be interested in doing a video about how work a computer in a ergonomically sustainable way, when you have hypermobile shoulders and cervical instability. Sometimes I do the programs and I feel great but as soon as I go into every day tasks, I lose it. 🙏🏻
@hEDSRehab
@hEDSRehab Жыл бұрын
@@mrandmrsragdoll6397 Hi, Thank you for your comment. I have not done a specific video for working at your computer, but I will definitely do one in the near future. I am studying for an MSc at the moment so completely understand the need for this!
@mrandmrsragdoll6397
@mrandmrsragdoll6397 Жыл бұрын
@@hEDSRehab thank you very much. I would love to be able to study at university as well. Your videos are such good quality, so I look forward to this.😊
@MI-qj6xr
@MI-qj6xr Жыл бұрын
Hi, are these exercises only for hypermobiles? Or can someone who may not be diagnosed with CCI or AAI but could have some kind of instability in the cervical spine also implement these techniques?
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi, Thank you for your question. You can of course use these if you are not hypermobile. It should be a great starting point for anyone with CCI or AAI. If you have CCI or AAI from an acute injury it is likely you could progress to some isometric exercises which would be safe for you to do as well. Some isometric exercises will be unsuitable for those with instability caused by a connective tissue or autoimmune issue, as all of the vertebrae are likely to be unstable rather than a select few.
@apacur
@apacur Жыл бұрын
Look up Caring Medicaid in FL..... The Doctor is a world class specialist in this. Prolotherapy is his remedy often
@DannyRows
@DannyRows Жыл бұрын
What about Iron Neck device training? I’ve seen it a lot recently, it started for training boxers to avoid concussions maybe jt could also help?
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi Thank you for your question. That device would be similar to the isometric exercises that I said may cause shearing of the cervical spine, so maybe for someone who has has a RTA but is not hypermobile, but not for people who may have multiple levels of instability or very poor proprioception.
@stephanies4580
@stephanies4580 Жыл бұрын
When I look in the mirror my left shoulder/collarbone is higher than my right. What causes this? Is there a stretch that would make them even?
@hEDSRehab
@hEDSRehab Жыл бұрын
Hello Stephanie! An elevated collarbone on one side can have various causes, and it is difficult to pinpoint a specific reason without a proper examination. It is worth noting that it is common for the dominant hand's shoulder to appear lower than the non-dominant side. If you are experiencing any symptoms or difficulties due to this condition, I recommend consulting an integrated systems method physiotherapist. They specialize in identifying the underlying causes of issues like yours. Additionally, check out some of my other videos where I discuss the movement of ribs and collarbones. They may provide further insights into your situation. If you find any relevant information, please feel free to come back and share it with me. Together, we can try to figure out a solution.
@T-wreckz
@T-wreckz Жыл бұрын
How about some solutions
@hEDSRehab
@hEDSRehab Жыл бұрын
Thank you for your comment. I completely understand your disparity in the lack of real solutions for CCI/AAI. I have found new exercises that seem to be beneficial, and am gathering valuable information from a new paper on the subject. However, due to my busy schedule, it might take a bit of time to get everything ready and presented on you tube. I am truly sorry if you are facing challenges related to this topic. I hear your frustration. As soon as I have updated the content. I'll make sure to share it with you and the entire community.
@Frododill
@Frododill 9 ай бұрын
I have CCI and have had terrible symptoms like those of a heat attack and unable to swallow correctly and digest food. Some solutions, find an AO chiropractor, one who adjusts on the Atlas disc. Get some physical therapy like those suggested in other hEDS videos. If you can tolerate acupuncture, find an acupuncture practitioner, it really helps calm down the central nervous system. If you have to take some pain medication or spasm medication like I do, then do so. I know in the U.S. they like to do disc fusions on the cervical spine. I refuse to do that, even though insurance pays for that. The other and I am looking into it is Prolotherapy or injections. I'm investigating this and there are only maybe 3 clinics in the U.S. that do it, but is reported to tighten up the ligaments in the neck. It is very expensive and is all out of pocket, but is promising. I hope everyone is able to find some relief because at times this can be a nightmare.
@HeatherBelling
@HeatherBelling 28 күн бұрын
@@FrododillI'm in the US also and I bet I can name two of the prolo places of the 3 u say exist, because they're the only two I have been able to find. I agree with everything u said btw. Centeno-Schultz in Colorado is on my list of where to travel out of state to next if I can't get help closer to home. Caring medical in Florida is the only other place I know of that is known for treating this type of instability but I actually wasted my time and money attempting to get help from them and I was treated horribly by their nurse "Rob" and the other practitioner Danielle from the onset. I warn others now bc all of their KZbin vids make them actually seem "caring" and even Christian! but the way I was treated by them and dumped as a patient after traveling form out of state and having such high hopes, shows their true nature. Which is that they like to get as much $$$ as possible and they don't like it if you question any part of their proposed long term treatment plan.. it was actually very weird and seemed personal how rude they were to me! Anyway, how r you doing now? Have you received any prolo at this point in time and if so, did it help you? ❤
@morganswampcroft1119
@morganswampcroft1119 Жыл бұрын
This is wonderful, thank you! I'm slowly getting support that I need and that's enabling me to begin thinking about starting these sorts of routines. If you don't mind and have time - do you have any tips for a fully bedbound hEDS'r?
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi @morganswampcroft1119, Thank you so much for your kind words! I'm delighted to hear that you find the content helpful, and I'm thrilled that you're getting the support you need. For fully bedbound hEDS'ers, I do have some exercises and ideas that I believe could be beneficial. I understand the importance of these routines, especially when mobility is limited. However, please bear with me as I am currently occupied with several commitments, and it might take me some time to put together the videos. But rest assured, I am dedicated to creating content that can be of assistance to you and others in a similar situation. In the meantime, if there are any specific questions or concerns you have, feel free to share them, and I'll do my best to address them in the upcoming content. Once again, thank you for your patience and understanding. Your support means a lot, and I'm excited to share more with you soon!
@shirljj9817
@shirljj9817 Жыл бұрын
THIS IS SO ME NEUROSURGEON SAYS NO SURGERGY. HELP sounds and feels like crackly crunch sharp stinging pain down my legs into my feet, burning pain. Xray shows mass at the brain stem.
@hEDSRehab
@hEDSRehab Жыл бұрын
HI Shirl, Do you wear a neck brace? That might help especially if in situation that cause perturbation such as in the car. I have a few videos on starting exercises. Has your neurologist surgeon given you a reason for no surgery?
@rosss7197
@rosss7197 Жыл бұрын
How long are the strips?
@hEDSRehab
@hEDSRehab Жыл бұрын
HI Ross, I use about two and a half squares which most tapes have on the back, for each piece. I might make it a bit longer or shorter depending on the size of foot though. Hope this helps.
@beverlydown2779
@beverlydown2779 Жыл бұрын
This is amazing and very well explained, thank you Bonnie 👍🏻
@hEDSRehab
@hEDSRehab Жыл бұрын
So glad you are finding it useful!
@briieme
@briieme Жыл бұрын
The volume is a bit low on this video. Great tips though! Thank you
@hEDSRehab
@hEDSRehab Жыл бұрын
Thank you for letting me know I will make sure in future videos the sound is up higher!
@nataliakondasova552
@nataliakondasova552 Жыл бұрын
Hello, thank you for this video. Would you be si kind to do some month video excercise guide for excercise with CCI and AAI, please? It will be perfect to try excercise with you, if we can see it on video. Like some month CCI, AAI challange. Thank you so much.
@hEDSRehab
@hEDSRehab Жыл бұрын
Hi, Thank you for your suggestion. This is a great idea only I am studying for an MSc, writing a book on the management of hypermobility and running a clinic at the moment which does leave me with a lot of time. I will however definitely consider it once I have ticked one of those boxes off. It is a really great idea.
@maesmith224
@maesmith224 9 ай бұрын
​@@hEDSRehabA follow along video with the CCI exercises would be sooo appreciated if you ever have the time to do it! Thank you for sharing your knowledge on CCI and hypermobility 🙏
@rosemarygreenfelder
@rosemarygreenfelder Жыл бұрын
'promosm'
@ashleydavis5557
@ashleydavis5557 Жыл бұрын
Love it x