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Medical Studies on muscular strength in individuals with EDS?

  1. Jun 12, 2010 #1
    Hey, I'm 18 (well, in two months) and I have the hypermobility type of Ehlers-Danlos Syndrome (in short, too elastic collagen). Recently, I've started strength- and cardiovascular training to improve my musculature in order to compensate for my weak tissue. Since it's a reasonably rare condition, the medical advice I've been given is very, very lacking (since no one knows anything about the condition), but the general consensus seems to be that strength training is good if you can manage it.

    I've been horribly, horribly weak my entire life. I'm around 183 cm tall (+- 1,5 centimeters) and weigh about 78 kilos. I've got a barbell and trained for a while, but I've come to realize that what I lift is utterly ridiculously light; I bench press a fantastic 25 kilograms, deadlift an astounding 45, and overhead press a tremendous 20-25. These numbers are, as far as I can tell, absolutely ridiculously low; even if I was anorectic I should be able to lift more than that. Obviously I realize that my condition does affect muscular strength, but I wonder if any amount of studies has been done regarding strength in individuals with my condition, and particularly the potential improvement in strength that could be made. I've got a whole slew of doctors, but no one can really tell me anything about the condition.

    I'd be thankfull if anyone can find anything.
  2. jcsd
  3. Jun 13, 2010 #2
    I'm surprised that you haven't found good information of EDS, and your type is well classified. From Physio-Pedia, there is sound advice in the physical therapy department:

    The key there is low intensity (so deadlifting at low weight many times is good


    Does this fit your experience?

    Here is an official (not wiki by students) criteria and such:


    Bottom line here is that you need to find a doctor who knows about this disease, get a positive and certain diagnoses (which cannot be made here), and then proceed reasonably with the goal of maintaining joint stability and minimizing discomfort. You do not need to improve your strength, and trying to do so in a classic way is likely to do harm, at the attachment points for tendons and ligaments, or even promote added hypermobility of those tissues later in life.
  4. Jun 13, 2010 #3
    you can maybe find more info by clicking related links or doing your own searches. google scholar can also be helpful.


    and i would consider ditching barbell bench press, it's notoriously bad on shoulders in otherwise healthy people.

    i also suspect you may find some joy in gloves reducing not only damage to the hands, but generating less inhibitory feedback.
  5. Jun 13, 2010 #4
    Oh, I've been to a doctor who diagnosed it beyond a shadow of a doubt. The only typical thing I lack is the velvety skin. The problem is that when you ask for actual physical habilitation in Sweden, you're generally directed to a woman in her sixties tossing a ball at you. The only actual therapy I was offered was horse riding which was okay for a while, but I only got half a year of sessions, and riding with retarded people just isn't that funny. I've been given the general advice that strength training is good if I can manage it, however.

    Thanks for the info, anyway. For now I think I'll stick to 5~10-rep programs in order to build up at least reasonable muscle mass; it's getting to the point where my lack of strength is obstructive, and in particular I feel I need to improve my core and back musculature in order to maintain a decent posture.

    Right now the core of my training program is actually 60 minutes of cardiovascular training a day on a crosstrainer - The one form of cardio that doesn't make my feet, hips or knees scream in agony. It's also a good way to lose some body fat.

    I'm not going to hit the huge amount of weights that present significant joint stress in a good time, so I'll have a good while to actually think about it.

    Proton: I'm not actually doing a bench press, but a floor press. It's much easier on the shoulders. As for hand calluses, I happen to like them. A glove generally gives worse grip, anyway. Thanks for the links, by the way, some useful information (Though I'm not exactly sure what they mean by quantitative muscle function in the following: Quantitative muscle function proved severely reduced despite normal findings on electromyography and muscle biopsy. http://www.ncbi.nlm.nih.gov/pubmed/17588758 If I understand it correctly, it seems that there's an implication that muscle function is reduced not only as a result of disuse or tendon elasticity, but also functionaly. Interesting.)

    I believe that the DON'T TRAIN WITH WEIGHTS AT ALL notion is a bit too conservative. To stabilize your joints, you need adequate musculature. To build adequate musculature, you need resistance.
    Last edited by a moderator: Jun 13, 2010
  6. Jun 13, 2010 #5


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    One thing to keep in mind: balance the strength training on all sides of the joint. For example, curls are great for biceps but do exercises to strengthen the triceps and deltoid as well.

    You probably already know that, but it's a "learn from my failure" thing. I dislocated my shoulder several times when I was young, because swimming workouts didn't strengthen my shoulders evenly.
  7. Jun 13, 2010 #6
    I know. Biceps curls are immensely overrated anyway. I do mostly compound exercises; generally the following (not everything at every training session, of course):

    2~5x5 deadlift
    5x5 barbell shrugs
    5x5 squats (limited, since I can only squat what I can lift behind my head. Probably for the better.)
    5x5 Overhead Press
    5x5 Floor Press
    5x5 Bent over barbell rows
    5x5 dumbbell kickbacks
    5x5 bicep curls
    3x5 power cleans (kind of working on them, though, since I need to make my knees not hyperextend)

    Prone Bridge 3~5 times until exhaustion
    Attempt full bridge 3~5 times and fail every time
    Shoulder-legs bridge 3~5 times until exhaustion
    5x30 crunches
    5x30 side crunches
    5x30 reverse crunches
    5x30 leg lifts
    5x# weightless squats, usually 10~20
    Some carefully selected stretching.

    So yeah, it's a decently complete program. Just need to start practicing chin/pull-ups too.
  8. Jun 13, 2010 #7
    quantitative simply means they can measure and put a number on it. qualitative is more subjective, like say how the subject says he feels about it.

    5 reps is a little low for bulk and moving into the strength range. you may want to look at something like http://forums.lylemcdonald.com/showthread.php?t=1696" to get some ideas about what rep ranges would look like, although someone with your condition will be needing to work with your physical therapist.

    and i can be of much help, but i'd spend a lot more time learning about the issues in that proprioception paper if it were me.
    Last edited by a moderator: Apr 25, 2017
  9. Jun 13, 2010 #8
    Well, I dunno, 5 reps seems to be pretty standard for strength building, and it feels like it gives my muscles a good work, and I feel stronger. Though, I have a rough plan to cut down my bodyfat (with tons of cardio) and then perhaps go on a bulking routine to more effectively build up strength. I'll keep it in mind.

    I'll keep the proprioceptive parts in mind, I definitely will. I know I had a terrible, what do you call it, "ball-sense" as a kid, but a physiotherapist (this was long before I was diagnosed, that didn't happen until I was 15) helped me train it up a bit. In general, I haven't felt it as a problem in years. At least I touch type excellently for a non-professional if I say so myself.

    I'm currently being, or rather was just moved from the "child" part of health care into the "adult" part. Prior to this I had contact with a physiotherapist which gave me roughly zero help. But the few knowledgable people I've spoken to have been very positive to strength training (of the gym variant) provided one can manage it. When you live with a condition like this you generally end up learning what's "good" and "bad" just by feeling your body; I've figured out that walking for a long while and cycling, for instance, are quite bad.

    But you seem knowledgable about strength training in general. Can I toss you a PM if I have any specific questions?
    Last edited by a moderator: Apr 25, 2017
  10. Jun 13, 2010 #9
    i don't mind PMs, although i do think the collective intelligence of forums is often better. for instance, i really wouldn't know where to begin to know how to overcome proprioceptive problems, but the paper seems to indicate it as a root cause of strength problems in EDS because of altered mechanics (elasticity). but i do know that 5-reps is getting closer to a range that would be more likely to cause injury from those "subluxations"(i assume they mean joint dislocations), and for strength training, i have found that slow and steady wins the race. time that you are injured is time that you aren't training and progress you are not making. so if there is anything you can learn from an old guy, let it be to set your strength goals on a longer horizon, say 3 to 5 years, and let consistency produce the results.

  11. Jun 14, 2010 #10
    My uneducated guess is that lack of proprioceptive ability stems more from disuse and unfamiliarity than anything else. I haven't had much problems with it, honestly, other than when playing ball games.

    As far as subluxuations go... I've had my shoulders jump a bit once with a dumbbell behind-head tricep extension. It wasn't very effective anyway, so I dropped it. That's pretty much it. I haven't had any other lasting pain or injuries from training.

    A subluxuation isn't a complete dislocation, rather a partial; the joint moving a bit here or there, sometimes locking up in the wrong position.

    But do you think that there is a purely progress-motivated reason to do higher repetitions with lighter weights? 5 appears to be the "magic number" I've seen, with about 85% of 1RM weight.
  12. Jun 14, 2010 #11


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    I don't know anything about your condition but, I would have to agree with ProtonSoup that 5 reps is low. Generally speaking, 10 to 15 is best for most weight exercises (I don't know how this applies to your condition though). The last few reps should be the toughest but not so much that you're killing yourself. If you can't do 10 - 15 then you're probably lifting too much weight.

    Don't worry about having to reduce the weight - just gradually increase as the reps get easier. Don't be in a rush to lift more than you can. I've been working out for years and I've seen the same old story over and over - People come to the gym for the first time, exercise like mad, injure themselves, and you never see them again.

    Good luck and congratulations on getting fit!
    Last edited: Jun 14, 2010
  13. Jun 14, 2010 #12
    Hmmm... OK, I'll try it out and see what I feel like. Thanks for the advice.
  14. Jun 14, 2010 #13


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    I missed this but, I agree 100%. I started my current program about 5 years ago and spent the first two years slowly increasing the weight. Long-term consistency is the main goal.
  15. Jun 14, 2010 #14
    I got my 10 kg medicine ball today, and glanced over a dozen or so videos on Youtube on good core workouts with it.

    And after playing for 40 minutes, I have to say, DAMN, this thing is amazing. Of course, my arms/legs generally tire before my core, but there's nothing wrong with working those. Will probably do a wonder on wrist stability, too. Of course it's too heavy to do some classic medicine ball workouts, but it's perfect for everything I'm looking for. In particular I like reverse/full crunch holding ball between knees.
  16. Jun 28, 2010 #15


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    It's been a few weeks now. How are the exercises going? Still hanging in there?
  17. Jun 28, 2010 #16
    Yep, I'm still at it. Can't think of much to say. Got a few more heavy plates and my deadlift isn't quite as bad as I thought, 70 kilograms with little trouble. My arms are as weak as ever, though. I'm really struggling doing biceps curls with the dumbbell even with as little as 20-25 kgs; Might be my form, though. And biceps curls are far from the most important exercises. Rows go fine, don't recall the exact weight, 55 or so. Floor presses are mediocre; 30 kilograms is pushing it, 35 is impossible even with a single press. The overhead press is okay at around 25; I think it has more to do with general stability than arm and shoulder strength, I should give a shot at sitting down.

    Plus since I'm cutting down my body fat right now (yes, I'm vain) I'm not really expecting to see any great improvements in strength.

    I also ordered a pair of yoga bands for pullup training; I've been given the tip of putting your ankles on a chair, wrapping the bands around your feet and pulling yourself up.

    I've been a bit torn between how to do my cardio (I use a crosstrainer); Right now I go at maximum resistance in a steady pace (40 RPM most of the time) and it gets my heartrate up good after a while. I can't keep it up for much more than 10 minutes at a time though, so I do it in a couple of intervals. I've been trying to do at least 30 minutes a day; Hopefully I'll get better interval length with time.
  18. Jun 28, 2010 #17
    I still wouldn't worry about strength, just stability, but having said that, I'm glad this is going well for you. Given your condition, this is a good regimen.
  19. Jun 28, 2010 #18


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    Awesome job. Keep up the good work and remember not to overstrain yourself. I got inspired because of your thread to increase my cardio as well. My workout was getting stagnant and need some changes.
  20. Jun 28, 2010 #19
    uh, 25kg biceps curls with one arm is very good. out of proportion to the rest. but yeah, it's the least thing to worry about. better to stick with compound movements, imo. stability in the torso will limit overhead press, but overhead press may also build stability in the torso. deadlift will also do this. sandbag training can also be a way to build a strong core and functional strength.

    anyhoo, glad to hear things are going well.
  21. Jun 29, 2010 #20
    25kg with both arms usin a barbell. I do no more than 10 with one arm.
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