Exercising in hEDS

An excellent talk I highly recommend – I found it very helpful. Watch it full-screen, I am sure if you are new to this new to this condition and are watching it for the first time, you will want to take notes! 
Intelligent Exercise-How You Can Take Control with EDS
Webinar by Kathryn Lister,  October 28, 2015.
As you live with this disease after getting a diagnosis, you know more and more about it and manage yourself better and better with time. It is different from intuitively figuring out a few things that make you better or worse, without diagnosis. In the latter, you often don’t have the necessary evidence or the scientific causality as to the WHY something aggravates your condition. So again, I think a diagnosis, even a partial but correct diagnosis is important. 
I am continuously learning, and as I find some things worth sharing I try to write here or on FB. Some ideas change or get refined too with time as I find more information or understand things better.  
I am writing below some key points I have learned over time about exercising, they are relevant to me and may not be all useful for another person. Every body and each case of hEDS/HSD is different and this is just a list of things that I found useful. These points are not just about exercises, they extend to other topics too, because often everything is interrelated. 

Body Awareness

  • Learn your body’s sign language: It is developing and sharpening a kind of “body intelligence”, that is helped by the already high interoception hEDS/HSD people have. But it is different from just interoception and feeling all the microthings happening in the body. It is discerning interoception + scientific knowledge + parameterizing. It is learning the difference between when you are feeling uneasy due to muscle fatigue, or due to dropping blood pressure, or GI issues. It does not work all the time but even a little awareness (instead of retrospective wisdom) is very helpful to understand and respect limits during exercises. So I can differentiate a good exercise effort that feels like pain from a No-I-should-not-be-doing-this pain. I understand my heart rate, hydration and blood pressure responses to exercises.
  • First do not harm: Find a good PT, but trust your own body sense too in following their instructions and advice. Listen to your body when exercising and stop when something does not feel right. I try not to do any movement or exercise I am unsure about. This is different from kinesiophobia which I had for years from severe back and lower limb pain, sciatica and neuropathic pain and spasms in legs. This is more about recognizing the limits and edges of my body. I want to exercise but I do not follow fads blindly. I would also advise against going to regular gyms where the trainers are not well-trained in body mechanics, posture, hypermobility and connective tissue disorders. 


  • No stretching: Stretching feels good but should be avoided. The muscle in connective tissue disease often does not stretch well, but the tendons and ligaments may get damaged. I do a little stretches once in a while when feeling particularly stiff, but my main regimen does not consist of stretches. 
  • Redefine the concept of exercise: Exercise by definition is “activity requiring physical effort, carried out to sustain or improve health and fitness.” This may look like this for completely healthy people: 

Image courtesy Pixabay


 But on my bad day, exercise may look like this:

Image courtesy: Pixabay


So exercising can take the form of just pushing myself out of bed, doing the chores mindfully, keeping my posture in mind, keeping my movements in mind, being aware that my joints don’t overextend as they support my weight. It can be rotating my shoulders as I sit in one place or even rotating my ankles and wrists when I am lying down. 
  • Self-care is an exercise:  As many of us know, trimming nails, brushing hair, wearing clothes are all exercises. You may not be up some of those on some days. Painting the nails is of course a complete workout, only few can do. Hot showers may be good or bad, depending on the day. They do help joint pains, stiff muscles and spasms. I do not have a bath, and anyway, I cannot lower myself into a bath and get out of it safely. The process of preparing for a shower, taking the shower, shampooing, applying body lotion, brushing one’s hair, dressing oneself, etc, is however, a serious workout and must not be mixed with other big activities in the same day. Foot bath is useful for foot pain. but the foot bath itself is a heavy unit that is not easily managed alone. Hot bags (with seeds) are useful for neck and back, followed with gentle exercises. 
  • Daily life is an exercise: Incorporate exercises into the daily schedule and count them as such. If I walk to bus stops, that is walking exercise. If I sit in the bus mindfully and am aware of and controlling the body’s reaction to the bus’s acceleration and torque, that is exercise. Grocery shopping, stairs instead of elevator, vacuuming, laundry folding, cooking, dusting and floor time with kids are all exercises in disguise. 
    • Isometrics and closed kinetic chain exercises: As the talk also mentions, these are the safe exercises for hEDS. There are many resources available online for finding low impact exercises, isometric exercises, water exercises if you have access to a pool, core strengthening exercises and relaxation exercises. 

Some excellent advice on exercises for hEDS is available at http://www.thefibroguy.com/hypermobility-advice/ 


  • Keep moving if possible: Muscle strength is difficult to build for me, and deconditioning happens very very fast. A few days of decreased activity – from influenza let’s say, and I am back by a few milestones. So if there is no serious prostration from flu or such illnesses, I try to push through the pain to maintain a low level of activity instead of taking a bed rest. This in fact prevents crashes like I used to have when I really had to be bed-bound for months. Like the speaker says, Exercise to EDS is like insulin is to diabetics. There is a #just5minutes initiative by Kendra Neilsen Myles (http://hypermobileyogi.com) that is something I agree with completely, that even on my worst days, I must move myself in some way for at least 5 minutes. 
  • Less is more: Exercising does not often look like exercising in my case. The movements and presses and pushes are subtle, the activation of small muscles is important. The vigorous exercises are harmful for me. HEDS patients often don’t feel the end point of the range of motion easily and where they feel the edge, where the stretch feels right, where the limb feels straight or where the joint feels locked and stable is actually in an hyperextension state. So you have to trust that the small movements are going to benefit you and keep away from doing things too fast or too hard. 
  • Don’t overdo things on good days: Ok, I am still working on this one, but it is very very important. It is important to break up a comprehensive chore list or exercise list into blocks of equivalent effort. 

So earlier, I used to be able to do some 100 chores (count everything, assuming I am doing it all alone, and omitting “once in a long while” chores like washing duvets) in a week. Now, I do the same 100 chores, many with help, over 100 days. Obviously, that takes a lot of adjusting to the decreased level of organization or neatness in the household. Some large chores may need a following rest day.  So a good week for me may look like this:

(Just to be clear, good weeks are by far rare, but average and bad weeks won’t look too motivating here)

Similarly, I must not do too many exercises on a good day just because I can.  I have developed a regime of 30-40 exercises which can be done in groups of 4-6 over a period of 7-10 days. So I have different set of exercises for neck; back (lower, upper, pelvis); legs, ankle and feet; balance; shoulder; arms, wrist and fingers; cardiovascular endurance and knees. I also have a different classification like supine, prone (on my stomach), sidelying, standing, wall, kneeling, and swiss ball. So I mix and match, do a little everyday and try not to overdo anything in a single day. 




  • Posture is important: Use a mirror or a camera to understand poor postural habits. I benefited a lot from Esther Gokhale’s book on posture. I also used Foundation Training videos to change my bending pattern that was damaging my knees. Long years of spinal problems had completely stiffened my back, and I got into the habit of protecting my back, but abusing my knees during my movements. 
    • Proprioception: Proprioception is a big issue for many of us. I used snug knee warmers for years to develop a better sense of my knee movements when I walk. I use a wobbleboard at times to train my balance. I found this website very useful: 


I also used standing on a foam board with my eyes closed and various kinds of stepping exercises to improve my proprioception. Improvement in proprioception immediately improves the way we do the exercises and what benefit we reap from them. 

Other considerations 

  • Sleep: Sleep is one of the important factors that determines how I go about the day. If I have slept an hour less the night before, that can lead to serious fatigue, nausea, dizziness, foggy thinking, etc. If I have been sleeping poorly for more than a day, then serious readjustment is required for everything else. So a lot of flexibility is required for daily life, and it includes canceling on people, being “selfish” and tolerating undone chores. 

Prioritizing: Prioritizing is critical to managing health-work-family balance. My #1 priorities are: taking care of my child, ensuring I eat healthy food (when eating store bought unhealthy food could allow me to keep more social commitments!) and doing the stuff that cannot or must not be left undone. Priorities #2 are keeping ties with close relatives which entails many forms and hours of communication, and experiencing meaningful moments with my family. Priority #3 comprises of communicating with friends and reading, including reading up on health related issues. And so on. So social media comes last for me, and I do not bother myself with it as I cannot keep up with the obligations and the rewards are not so valuable to me. 


  • Supplements:  I have deficiency of many vitamins, so I take those. I also take a low dose magnesium tablet, vitamin C 500 daily, and fish oil capsule. I am prone to cold infections, so I take appropriate supplements at times like Tulsi tablets, rooibos tea, ginger and turmeric tea. It is worth considering if you need any supplements, especially if you have any deficiencies. Also it is worth considering if there is enough evidence to support the benefits of the supplement you want to take and what are the adverse effects of the supplements.
  • Emotional and mental health: These are important considerations that must not be ignored – and if a bad phase is going on, necessary changes may be needed in the exercise regime and activities of daily life. 
  • Pain issues: Pain is one of the core issues of hEDS/HSD and it has many components. It can be nociceptive, arising from recent or immediate trauma or microtruama or it can be brain pain (arising from spinal cord and brain pathways) that leads to chronic unrelenting pain and turns even the sensation of stretch or slight muscle fatigue into intolerable pain. Chronic pain is a complete different field that requires comprehensive team based management that most of us do not have access to. Research and reading up can be helpful for self-management up to a certain extent. It may be useful to break the cycle of chronic pain so that one can start an exercise regime because sometimes the pain is so severe that you cannot even imagine trying to exercise. I am trying out TENS (transcutaneous electrical nerve stimulation) and acupuncture as a way to break some vicious cycles of unrelenting localized pain. In the past I also benefited from the local application of capsaicin for a localized chronic pain resulting from a very old healed muscle tear. The amplitude of the pain in that spot has decreased. I have bought a home TENS unit and it is too early to tell if it is going to provide any lasting benefit to me, but many hEDS patients benefit from it. 
Some useful posts from Jo Southall: 





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About Hypermobility Syndrome India

I am an Indian woman with Ehlers Danlos Syndrome Hypermobility Type (EDS-HT or hEDS). I have been living with this disease all my life, and fighting the manifestations blindly without knowing why my body was a living demo of textbooks of different branches of medicine. Getting a diagnosis at 38 years of age opened up the path for my emotional healing. I aim to raise awareness about hEDS, chronic pain, invisible illnesses, mental illnesses and invisible disabilities, and share my experiences through my blogs.
This entry was posted in Awareness, Daily Life Challenges/Tips, JHS/H-EDS, Pain Management, Physical Therapy, Treatment and tagged , , , . Bookmark the permalink.

13 Responses to Exercising in hEDS

  1. Fibronacci says:

    This is a really good post for many chronic pain issues. Thank you for sharing it! I especially liked the graph that shows how on different days, you might divide up your total “activity amount” different ways, without going over the limit. You know I’m a scientist when a graph just hits me like words never can. LOL!!! 😛

    Liked by 1 person

  2. Martha Harrison says:

    A m a z I n g article

    Will share. Re read. And practice.

    Thank you.

    Liked by 1 person

    • Thank you Martha. Hope you find something that works for you.


      • Martha Harrison says:

        I find that I was doing much of this anyway but you put it into words and validated it too.
        Here’s to mindfulness.
        BTW I find when you are mindful it’s extra tiring because ypu are working those muscles and tendons so I need extra rest

        I sometimes wonder if I’m aligning my bavk correctly. ..time and poor habits have made it harder. Do you recommend those braces you csn get? Ty


      • It would really depend on your situation. I think they are alright for occasional use, but the mainstay of good posture has to be to build up the strength of the muscles themselves first and depending on the individual’s muscle response and limits, supplement or support with braces. Plus braces are also needed when there is significant instability of any joint from the ligamental laxity.

        For me, during the years (a phase lasting 12-13 years) of my worst spinal problems, with recurrent disc prolapses and spondylolisthesis, one of the ways I could survive the pain and function was by using a lumbar support off and on. But the lumbar support brace leads to more stiffness and muscle weakness, which is like a vicious cycle. The cycle broke only when I went into a very low mode of functioning for two years, and concentrated only on healing. Well, I was forced to, because I really crashed. But I stopped working, took a long bed rest (which led to even more deconditioning), and worked my way up from a level when even raising my forearm with elbow on the bed became an exercise. I really reset my body.

        For my posture, I still have a bad posture as I have an excessive lumbar lordosis (sway back, came with pregnancy) and a kyphosis (hunch back, since childhood) of the upper spine. Before that, during the spinal problem decade, the lower back was flattened out due to severe muscle spasms, which was also a bad posture. I also hyperextend my knees and have a neck forward problem. But I have improved my posture a LOT by working on it, for past 2 years. Even now, when I am tired by the noontime, all I want is a brace – a scaffold to pull me upright and keep me in “good posture” but I think I have managed to improve my posture with slow but steady efforts and I am in a much better situation now. And yes, mindfulness is an exercise – tiring! But with posture, even slight improvements help, I have noticed. When I am too tired, I allow myself to hunch though. I will soon write a post on the things I used to improve my posture and drop a link in this thread. Thank you Martha, and I wish you the best.


  3. Martha Harrison says:

    Please explain graphs a bit more.
    When do you rest?
    Is this a 10 day? Ty


    • I am sorry the graph is not more explanatory. I mean, if we assume that I am active for 10 hours a day (on a good day), then I would perhaps choose to break up my activities this way. The reality is that, good days are only 2-5 in a month, usually in the week after my periods. Some warm months, I can have 7 good days at a stretch maybe. But usually by day 10 after periods, serious exacerbation of many problems start. I also try to ensure 6-9 hours sleep and sometimes a mid-day rest (lying down, reading/meditating etc,) for 30-90 minutes, esp if I have slept less at night. My point is that with this condition, some days I consider getting out of bed and staying out of bed an exercise because it takes immense effort and will power to do so. In that, I add mindfulness to each movement, because it serves two purpose: (1) routine movements done correctly without misalignment and excessive stretching work like exercise, (2) it prevents subluxations and overstretching of ligaments esp on bad days when the muscle tone is especially poor. Hope this helps to clear things up. Best wishes, and thank you so much for visiting my blog. Hugs. Viv


  4. Martha Harrison says:

    Thank you. That clarifies things. Really helpful.


  5. Martha Harrison says:

    Thanks. I relate to a lot of what you say. I’m a retired Orthopaedic nurse so it helps.
    Presently I’m in that crash phase …left trying to work and doing much of anything and totally crashed not helped but lack of GP and welfare support. 3 years in and still struggling with this. Only hearing what you say about using forearms when lying flat in bed ding effort and painful I finally get a sense of relief and validation that I am actually as poorly as I feel.
    Thanks again. Love to my ancestral home in Punjab and look forward to the post. Take care xx


    • I am sorry to know Martha that you are struggling through so much. I would imagine that being a retired nurse would get you access to a better support from the system. I wish you a quick recovery out of this extreme situation and that you may find a supportive solution from the healthcare system. Take care of yourself and don’t give up.


      • Martha Harrison says:

        Hello dear.
        I saw physio for eds JHS first appt.
        He only seemed concerned about pain management and less about working on core exercises. I’m also trying turmeric as Golden Paste. Any tips?
        Regards xx


      • Hi Martha, thank you so much for your message and update. I am glad you have started PT, and I think starting with pain control is important to start doing exercises correctly. Please also see my email. Not so sure about the Golden Paste. I benefited from local application of capscaisin creams. Orally, I take a few supplements, including Vit C and Vit D.


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