- 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:
- 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.
- 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.
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