Studies on muscular strength in individuals with EDS?

[TubbaBlubba]

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.

 

[nismaratwork]

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:

•Exercise program consisting of aerobic conditioning combined with a low resistance, high repetition resistive training program to promote increased joint stability by increasing general resting muscle tone

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

http://www.physio-pedia.com/index.php5?title=Ehlers-Danlos_Syndrome

Type Inheritance Previous Nomenclature Major Features Minor Features

Hypermobility[3][7] AD Type III Skin involvement (hyperextensibility and/or smooth, velvety skin)

Generalized joint hypermobility
Recurring joint dislocations

Chronic joint/limb pain

Positive family history

Does this fit your experience?

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

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=eds3

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.

 

[Proton Soup]

you can maybe find more info by clicking related links or doing your own searches. google scholar can also be helpful.

http://www.ncbi.nlm.nih.gov/pubmed/7283686
http://www.ncbi.nlm.nih.gov/pubmed/19557868

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.

 

[TubbaBlubba]

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.

 

[lisab]

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.

 

[TubbaBlubba]

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.

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)

Bodyweight:
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.

 

[Proton Soup]

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.

 

[TubbaBlubba]

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.

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 knowledgeable 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 knowledgeable about strength training in general. Can I toss you a PM if I have any specific questions?

 

[Proton Soup]

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.

Arch Phys Med Rehabil. 1981 Sep;62(9):444-8.
Muscle formation in Ehlers-Danlos syndrome.

Bilkey WJ, Baxter TL, Kottke FJ, Mundale MO.
Abstract

Ehlers-Danlos Syndrome (EDS) is a familial connective tissue disorder characterized by marked joint hypermobility, skin hyperdistensibility and fragility. To determine the influence of connective tissue hyperdistensibility on muscle function, a young woman with classic EDS underwent extensive muscle function testing which included a controlled strengthening exercise program. Quantitative muscle strength testing revealed generalized muscle weakness characteristic of this disease. The strength-length relationship curve for quadriceps was shifted, implying an increased series elastic component of muscle. No inherent muscle abnormality was evident from electromyography and serum enzyme evaluation. Unusual fluctuation in maximal isometric strength output curves was found in all tested groups. A functional proprioceptive deficit was demonstrated and found correctable with training and visual compensation. Reduced joint proprioception, plus the tendency for minor subluxations from daily activities, resulted in a learned motor pattern that emphasized short jerky motions rather than sustained precise muscular contractions. From these findings, muscle function in EDS was hypothesized to be affected by connective tissue distensibility.

PMID: 7283686 [PubMed - indexed for MEDLINE]

 

[TubbaBlubba]

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.

 

[Borg]

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!

 

[TubbaBlubba]

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!

Hmmm... OK, I'll try it out and see what I feel like. Thanks for the advice.

 

[Borg]

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.

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.

 

[TubbaBlubba]

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.

 

[Borg]

It's been a few weeks now. How are the exercises going? Still hanging in there?

 

[TubbaBlubba]

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.

 

[nismaratwork]

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.

 

[Borg]

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.

 

[Proton Soup]

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.

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.

 

[TubbaBlubba]

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.

25kg with both arms usin a barbell. I do no more than 10 with one arm.

 

[bracept]

Hi TubbaBlubba,

I know it is a while since this thread was active but found it searching for EDS and resistance training and found this very useful. I am a UK physiotherapist and I have treated a number of people with EDS over the years however we are often referred people with an acute problem and not given the time to develop and train patients/clients through a progressive strengthening programme as you have described.

As has been mentioned there is little research to provide specific evidence or concepts as to what we as professionals should be advising and formulating with our treatment advice. Over the last few years I have taken an increasing interest in kinetic control principles (http://www.kineticcontrol.com/) that is a model that uses specific structured movement tests to determine dysfunction and thus facilitate the physios ability to correct and improved movement patterns, therefore improving pain and reducing the risk of reinjury for patients.

I have a strong interest in strength and conditioning having worked closely with many coaches and as various levels of sport from amateur teams to elite athletes and also some time with disability sports (particularly challenging was working with cerebral palsy football teams) so I am intrigued to know further down the line how you are doing?

My experience would tell me with EDS that you are doing exactly the right things with your training as to summarise simply:

1. EDS causes hypermobility of collagen fibres
2. Joints inherently have increased laxity resulting in increased risk of acute injury and chronic degeneration due to excessive sheering forces on the joints
3. Kinetic control theory states to improve stability require efficient motor control/muscular strength
4. Resistance training (with the correct form and neuromuscular control) is the only way to significantly improve strength

I have not been able to find any evidence as yet whether type 3 EDS has any impact on acute muscle fibres, perhaps there has been no research as yet?! But as I said I would love to hear an update on how you are progressing?

Thanks