Movement is Medicine – What’s the secret to healthy, sustainable movement with hEDS & HSD?
A diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) typically comes with the advice to exercise regularly. But patients with these conditions are often unsure of how to exercise correctly or may experience anxiety around exercise due to prior poor outcomes. It is reported that patients often stop exercising because of four main reasons:
- Inappropriate exercise
We know that patients with connective tissue disorders do tend to decondition quicker than those without a disorder. Deconditioning can lead to a downward spiral where the patient may be even more reluctant to exercise. Being hypermobile can create musculoskeletal imbalances that cause pain and instability. If muscle tone and postural tone can be improved through conditioning and exercise, this can help reduce the imbalances in the body and consequently reduce pain.
As a movement therapist specialising in working with patients with hEDS and HSD for over 14 years, I have developed a specific method that can help alleviate these fears surrounding movement. This approach – the Integral Movement Method for hypermobility - looks are six key factors that I believe are necessary to build a strong hypermobile body.
We first need to address the kinesiophobia and anxiety around movement by calming the nervous system through breath and relaxation techniques, so that the patient feels safe. If a patient is scared or worried when exercising, their muscles will be tight, bracing in anticipation of pain.
Proprioception and stability work together. If body awareness can be attained through reducing range of movement and thereby improving joint control, the patient is going to start experiencing more stability. Working on alignment is very important to ensure we are building strength in the right place to give optimum functionality.
Introducing more challenging movements that involve balance and posture comes last. To safely promote balance, which is essential, the patient needs to have a good degree of body awareness first – otherwise they will brace and grip potentially using all the wrong muscles.
In addressing inappropriate exercise, it is important to remember that hEDS/HSD patients do not tend to follow a ‘traditional’ physical therapy route. A 6-week plan of improvement may not be achievable – there tends to be ups and downs in progress – and this needs to be taken into account. I strongly advocate a Go Low, Go Slow approach – slow pace of exercise to build sensitivity and awareness, slow pace of progression of exercise and low amount of repetitions to ensure tissue tolerance is gradually being gained.
Can you relate to any of these issues? How has your experience with exercise been? You can find a wide variety of movement and mindfulness classes on my hypermobility YouTube channel. For a structured and guided exercise pathway, please take a look at the app The Zebra Club www.thezebra.club.
Author: Jeannie Di Bon, Movement Therapist
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At 58, I was diagnosed with hEDS in July of 2022 after 12 years of pain and waking with a stiff back everyday. I infrequently did the same type of exercise I had done previously which only contributed to the problem since I had no knowledge of the correct positioning of my body resulting in more stiffness and pain. Thankfully, by following the instruction and exercises in the Zebra Club I am finally learning what my hEDS body needs and am slowly progressing toward pain free full body awareness.
Great insights! And explains why "regular" PT has never worked well for me ….
I am a “beginner” with The Zebra Club and am very slowly regaining more trust in, and respect for, my body. I feel impatient to do more, but am learning that the gentleness of the IMM practice is just what my body needs. Thank you Jeannie!
@mischascookin, you and @lauraf0801 and @cacat may wish to join others talking about living with hEDS in this discussion group:
– Ehlers Danlos Syndrome (EDS) & HSD, calling all types! https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/
Hi, and yes…..there are a lot of us out here! I am 72 and have been told repeatedly I look about 62……I want you to know that when you feel discouraged that it only will end badly………..because I am super super proactive at all of these things that try so hard to knock me down! I have bumper magnets about EDS and people stop and ask me as I don’t look like I need the handicapped spot and get a bunch of frowns. It gives me an opportunity to teach and since I was a teacher and am still a counselor, it matters to educate your environment on a disorder that it horrible but I continue to see gymnastics and dance and ice skating and ballet, take full advantage of what they know to be a condition that is detrimental to the body. I just picked up one yesterday in a dance studio for 3rd graders. She, like me once, was showing off all the stuff she could do and getting a lot of positive attention for limbs and fingers that were clearly severely hyper mobile. I got my friend aside who is friends w the teacher and told her she needed to alert the teacher/coach…..otherwise I think these folks are culpable in the harm to these kids!…. Sorry….I feel like this is never getting enough attention in the world of sports and dance. You asked about exercise. Normal walking with walking sticks along with Fit Flop shoes with the imbedded “wobble board” is the only way to move !..sticks giving you a constant balance from upper limbs and FitFlop shoes that you literally imprint your body weight in, give you the security of the bottom limbs and feet. Godsends! I have worn nothing else for well over 20 yrs. The boots are even gorgeous, slippers, all of it, male and female shoe apparel. I do not step out of bed without slipping this major support onto my feet. One leg is so much shorter than the other that I’d fall over, but I look perfectly normal in my fit flops and they give me a pain free life. And no, I do not sell them!. They have their site and also on Amazon. Look for sales. Remember, you are buying the soles and get the original dense thick ones because they are the ones that throw your body straight and enable perfect posture when of course we don’t have that. They have never failed me and never wear out!….if you are a half size , go down. The arch support is key!. The only other thing I espouse is walking in water that is salt water! And on one level, and epsom salt baths. But NOT hot, no matter how good it feels, think of rubber, and the higher the heat the faster it melts!…. And oh yes, I know the heat feels good too. The other thing that has been a Godsend is
Salon Pas pain patches…..the older and cheaper ones are the best for me. I use them post surgery and any time anything is aching including headaches! If you look at an older person in your family like I did my mother, and see hammer toes on her effecting her balance, then look at your own and when you see that happening get them fixed. Stay ahead of the demise of a joint if you can and don’t wait until due to the domino effect you jeopardize 3 other joints by not attending to the first one thats messed up. I have ten titanium pins in my toes and I have no balance problems and my feet are not curled. Not true of my sister. I also saw her fingers start to bend in a funny way years and years ago and asked her why she was not getting them straightened. Didn’t want to. She cannot pick up a jar today…….stay in front of it! Be the shining light if you can! It is an overwhelming thing that we have and if you have anxiety from it get that in check with medicine as it will drive you into a depression that you needn’t have suffered with. Generalized Anxiety Disorder is a co-morbid condition w EDS. My mother did not address that either and it turned into Parkinsons, like her sister, and brother. Two cousins already have it, and I am determined not to do that to my brain and have calm happy days and am on my meds since 42 years old. Fight for your joy! My adult son and daughter are both on same meds. They got dangerously close to depression but it was handled with the same meds as mine…..because I begged them to give that a shot first and not to succumb to antidepressants first when they had anxiety for years. Mine is Effexor, and now is generic. All of my Canadian relatives too have some form of all of this. We are all from the British Isles. The beautiful skin folks……forgot to tell us it would drop like a rock ….lol…….ahhhh but I had that fixed too!!!…..fight for your joy!! I will keep you all in my prayers!!!
@briisessions @drtknight1 Hello 👋🏻 this is so real, in my case I’m not anxious or fearful about it, but POTS makes this even a little more challenging. My muscles are so wasted but I’m doing my best using the things that I have been given:
✅foam OT prism helps my grip I start from the shorter side then horizontal giving space to rest and not over doing it.
✅ grips – I have on my writing objects, big ones on bottles and my mom sent me a phone grip to help me. (my phone 📱 was relieved from dropping it lol 😆)
✅ my local hospital gave me a Voldyne 4000 to strengthen the breathing muscles. I start very low and I don’t rush since it’s easy to feel like passing out so I’m at 1,500 still no rush when able to sustain it constantly for a week I’ll move the pointer up.
✅ elastic bands PT they are a game changer again their color means their resistance I’m still low but it’s not a race. Stretch is very important but it looks different for everyone of us.
✅ my local hospital gave me walker, I don’t want to use it but most of the time I feel like walking on spaghetti legs (fell 2) the local PT said I need to start slow and mindful of where I’m putting the pressure when using it, I learned also how to stand properly. Still I’m prescribed a rollator because of the persistent falling. But I’m honestly searching other alternatives like body banding, tape, join brace etc. but every time I walk I get this weird bruise on my sides of the leg like the muscles got punched. POTS don’t make this easy for me either.
✅ I don’t know if walking barefoot on the sand 🏖️ it’s a good idea but it challenges my balance, is this ok? I do go with someone not alone and always mindful of my movements and I have the support or just sit in case of needing it.
✅ for occipitalization of C1 with mild posterior tilting of the dens and nerve root and plexus disorder on T1-2 I’m trying to move slowly with the exercises on neck but I’m not sure what going on it’s too crunchy so I’ll let my team help me on that. For now icing and not doing abruptly moves with my head. (No ❌ Metallica style) 😆
✅ imagery, mindfulness, faith and gratitude helped me, even for the fall or the pain, trying to change the mindset is really challenging more if your system it’s not fully understanding or just not prepared. Learning to use your technique, strategies, methods and resources it’s really important. Trying not be too hard on myself and understanding that not everything blooms at the same time 🌸
✅ I’m advocating and giving the amazing resources I have been given like the ones of the EDS society to build my local team that acknowledges my particular needs. ⚠️⚠️⚠️⚠️⚠️Specially when it comes to movement.⚠️⚠️⚠️⚠️⚠️
I dunno if HSD or hEDS cEDS clEDS etc have any differences (regardless of my new genetic results mutations) managing this particular topic it’s extremely important to start living your life forward. We all know it’s really challenging but personally I like challenges and I’m extremely grateful for everything and everyone they have been extremely important in every step of the way 🐇👟👟🏁🐢🏁
Thank you so much for sharing this information 🌼 any feedback would be greatly appreciated 🤍 Blessings of healing and wellness for everyone 🙏🏻
Proactive is the right way to be for any of us with this ‘orphan syndrome’. Thanks for the work, TSB … and all who post
My proactive stance took a different direction … what is a fix? After 5 different doctor visits over a couple of years I found regenerative medicine and a doctor at National Spine and Pain Center who said … your SI joint is overextending to meet the shortened leg left after that hip operation several years earlier. The overstretching has damaged the ligament you use every time you walk. Prolotherapy can fix the ligament. It did! The treatment needles the length of the ligament, and the agitation turns on self-healing, or regeneration. Why is this fix not part of regular medicine??? It worked so well for me.
All was back to normal until the hip, pushed out of place by those years of wrong walking and hip movements, was operated on. The Dr. ignored the info about the joints, the femur fractured and the fix was badly done. A third operation fixed the hip but by now the wandering SI Joint was constantly hyper-extended, and eventually the entire spine became ready for hyper-extensions. The cervical joints 4-7 got tightened with prolotherapy to protect the blood flow to the brain which was getting slowed during sleep. Again, it worked.
Another fix? Rebuild the muscles that once held the joint in place … so twice weekly PT was good until COVID. The past 2 years of no PT has taken a toll. More prolotherapy is a good bet. There are a few exercises I do daily, in the AM and before bed. Knee to the chest for each leg seems to put the SI Joint back in line. And stretches are important … hamstring, but only bend into it until it hurts is one. Dropping a leg off the bed as you lie along the side is another. That stretches the illiopsoas, which can get very tight doing the work of the stretched ligament. My granddaughter has a massage therapist who understands the syndrome.
Walking was good after I found a belt from http://www.jbitmedpro.com. The belt attaches to your feet and keeps the hips in place as you walk. The website has nice little exercises too. Supplements? I do take collagen and now have fingernails for the first time in my long life. Does it help? Who knows? But it must be doing something with my connective tissue. I also have a special seat … BackJoy, and it too helps keep me aligned.
Finally, educating other doctors is a very difficult thing, but I have found out that they will listen if you put them in touch with another doctor.