Training strength with hypermobility; 14 year old female

I started training L last year, at the end of October. After several months of unsuccessful physical therapy for her left knee, she was on and off crutches, with her left knee sublaxing consistently and involuntarily. L was very weak and in a highly fatigued state when I met her, struggling with very low energy, low motivation, and multiple complications with unspecific causes (or unidentifiable causes). 

I was recommended to her parents by another colleague, as I had familiarity and knowledge about hypermobility (which was just one aspect of her physical condition at the time), and the hope was that I could also motivate L to exercise in a positive and fun manner. When I first met her, L was unable to walk normally, and her lower left leg appeared to be disconnected from her upper leg, sublaxing with each step, in an alarming manner, placing very apparent negative stress on her joint. She was walking with what appeared to be a dislocation, yet was not actually one (as confirmed repeatedly by her orthopedist, MRI imaging etc). Watching her walk and move, was at first very disconcerting and alarming. Her left knee would not “stay in place” whatsoever, and her basic movement mechanics were seriously worrisome from a coaching standpoint.

Usually, before working with someone, I take them through some assessments and get as much background information as possible, so as soon as I saw L, I realized working was going to be quite a bit more complicated. She was not only very weak physically, but had a very high level of fatigue in any physical tasks, including sitting or standing, and rapidly lost both energy and the ability to pay attention. She was very injury prone because of this, but also because of her age (14, fully in the throes of puberty). She had spent several months in a full leg cast. Her knee joint was sound structurally and passively, but not actively. 

It took a bit of time for me to get the whole picture, but communication with her parents and care team gradually brought necessary details to light and eased my concerns about working with her. I took on the challenge of training her in a normal gym setting, as recommended, even though her physical condition was one I would venture to say, is normally seen only in a rehab or hospital setting.

It was apparent immediately that hers was a unique challenge to training and that communication and collaboration would be essential to success. L’s parents were very cooperative and supportive of my questions and facilitated my ability to communicate with her medical care team, something that was greatly appreciated. 

L is very hypermobile, which is common at her age, especially in females (1,2,3,4), and there were a lot of other complicating variables as well, of which hypermobility was simply the easiest to see immediately. Joint hypermobility is a genetic-based condition, involving the connective and soft tissues of the body. It can range from benign (Benign Joint Hypermobility Syndrome) to harmful (as measured by simple tests for the joints), or as part of a more serious disease or disorder (Marfan’s, Ehlers-Danlos and osteogenesis imperfecta).

L came from a professionally trained ballet background, and the motor patterns (full forward flexion) and aggressive stretching strategies she was familiar with, were dangerous to her after multiple injuries, the onset of puberty, and the cessation of her ballet training. While joint hypermobility does not always lead to joint pain or negative complications, and is often necessary and trained for in certain sports (namely gymnastics, ballet, common in swimming as well), there is a connection with a high prevalence of joint pain and injury, especially in females (5,6,7,8).

Training her was going to be a combination of building motivation and consistency, but also helping her learn to move with a different “feel” and in ways that would strengthen her joints and be beneficial to her, currently. Her movement strategies from her dance background would no longer serve her well in gaining strength and joint health.

My first priority was; helping her enjoy exercise, and learning to move in ways that would first, not make anything worse. Before we could even get to what you could consider normal  “working out” or anything close to following a program, she needed a lot of help increasing her baseline energy levels. That meant helping her improve her daily sleep and eating habits, and set up strategies for building those habits simply and practically (surprise! hahah).

L could walk, so to speak, but her left knee would sublax while doing so, and appear to be “disconnected” from her body, her foot limp and trailing. She had a lot of trouble getting around school, up and down stairs, carrying her backpack etc, and this made school physically very tiring.

Here’s a list of what she was experiencing with her left leg, strictly, aside from her overall neural fatigue and additional specific complications (most of which came to be resolved over the time we spent training):

  • active subluxation of the left knee while walking
  • no voluntary motor control of the left lower leg (cannot dorsi/plantar flex)
  • cannot voluntarily externally/internally rotate her left hip
  • cannot voluntarily extend or flex the left knee
  • cannot voluntarily flex or extend her left hip
  •  left biceps femoris in extreme tension (this caused a lot of pain and altered motor function, partly due to not putting weight on her left hip for so long, even after her knee was structurally sound, her biceps femoris was very tight)
  • left VMO doesn’t fire at all
  • lack of sensation in lower left leg
  • lack of circulation in left foot/toes
  • no sensation in left big toe
  • involuntary twitching of the left ankle medially/laterally

L had developed very awkward motor patterns that allowed her to walk, while not placing weight on her left hip. There was no force actually being placed on her bones; femur-knee-tibia, but she developed movement patterns that bypassed the “bones”, so to speak. She could walk, but looked like she better not!

These freeze frames are from the only video I had left (thanks to updating my Iphone), and keep in mind she is walking backwards here. The lighting was too poor for the forward moving frames. This was in January, after the first 3 months of training, which was mostly getting her to a place where she had energy TO train at all.

Her movement strategies for simple tasks like getting up and out of a chair, lowering herself to the ground etc, suggested her leg was still “frozen in time” so to speak, and she held and moved her leg as if it was still in a cast, even though it no longer was.

Admittedly, I was not fully confident when we started, that I could help improve or reverse this with training and reeducate her motor patterns, but after gathering as much information as possible, and confirming multiple times that specific neurological issues had been tested for, and her knee joint was structurally sound…we dived in!

There was so much to address right away, but as said above, the first challenge was in helping L enjoy exercise, and not continue those actions which would make things any worse, while helping her establish daily habits that would enable her to increase her baseline energy levels, and give her body what it needed on a fundamental physiological level first; sound sleep, and consistent food.

Since her overall neural fatigue was very high, it was difficult for her to pay attention, to both instructions and movements/exercises, at the same time, most of which were entirely new to her. This was apparent right away, as the ability to do anything well, starts with the ability to pay attention.

Everything had to be extremely simplified, but more importantly, I had to direct her attention very specifically, or her energy would rapidly be “used up” before we could get any sort of actual exercise work in. She needed to have fun, while also learning what was “right” vs “wrong” in exercise and movement (context-dependent) and then gradually pushing the boundaries of her abilities which requires being able to maintain focus.

Focus, her ability to stay remembering, engaged and involved in a task physically, was the first demand on her energy.

The first “physical task” she needed to feel and learn was a very basic one: stay still.

L liked to move constantly, but in ways that were not very beneficial to her joints (flinging, popping, slouching, arching her back, wiggling constantly), and she would also use up energy doing superfluous movement, that I needed to be directed to intentional movement (exercises that would make her stronger, or movements that would not make anything worse). Since she had little energy to start with, and needed to increase it, she had to learn how to stay still, for short periods of time.

Why?

Isometric strength. Creating voluntary maximal muscle tension in a position without any external load, is a fundamental strength task. One of the easiest ways to test someone’s max strength without external load is in a plank.

But L couldn’t do anything even close to a plank with proper form yet, much less stand still. So, “staying still” while lying down or sitting is an example of where we started paired with something that allowed her to also move without risk (bouncing on a ball, rolling on the floor). The ability, to understand “still”, came before anything involving “muscle tension” or an additional instruction such as “hold this dumbbell AND stay still”.

Laying the foundation for energy

I don’t know about you, but I remember being a teenager, and consistency in sleep and food was the last thing on my mind. Establishing good habits is a slow process, because to say you have established a habit, means that you have successfully integrated a behavior into your life in a way that it no longer requires conscious will to “remember” to do it. This is hard initially, and requires energy and time to find the right strategies (“try this, not that”).

Good habits built slowly become ingrained firmly. It requires a lot of energy to change habits rapidly, and most of us are not successful at it. That is a fact of life. We often have a win-the-lottery mindset about habit change, that is rarely ever successful.

Practically, as a coach, I don’t expect rapid changes in attitude and habits. But as a coach it is my job to consistently help those I work with be aware of and integrate good or better habits into their lives. Because, well, it is the foundation that determines the strength of the structure no?

I emphasized two things above all others:

  • Going to bed at the same time
  • Eating breakfast, lunch and dinner consistently. All three meals, no exceptions.

Once I started talking about those two daily necessities, we started to uncover the problems in application. Some of them were simple, some not as much. L struggled with falling asleep, staying asleep, and her circadian rhythm was off balance, so that she felt energetic at night, and sleepy in the mornings. She also had a hard time sleeping in a comfortable position because she had gotten used to a cast, and her unnatural sleeping position was now contributing to her back pain, making it even harder for her body to relax in sleep. I suggested a couple things for her to try, and over time she stepped up to managing herself better and sticking to finding what worked.

Some of the simple strategies I had her try were:

  • Sleep with a pillow under your left hip
  • Sleep with her head to the end of her bed (so she would roll towards a wall, not the edge of the bed, which she tended to do)
  • Start enjoyable reading for bed at 10, to fall asleep at 10:30

Simple instructions were imperative. I tried some, let some go, tried something else etc, until we could find what would actually work from day to day and not be too complicated to remember.

I challenged her to be responsible for eating breakfast, and eating it consistently. We talked about what constitutes a “balanced healthy meal”. L really needed enough calories, to increase her energy as well. For her age, height, plus exercise, social life, and her need for to “rehabilitate” her energy levels, adequate calories were imperative. Tracking calories etc, was not practical, but constant reminders, and sometimes some simple “What are you going to eat?” questions, and encouraging accountability for eating consistently, and well.

Sometimes the information many go by for what is “healthy” is very skewed (I think those of us in the fitness industry see this so much). Health starts with balance based on scientific fact, not arbitrary attempts at perfection, perfect foods or popularized concepts of “healthy” (aka only salads, organic, “seeds and sprouts”, etc), which are often hit or miss and do not convey the totality of what a healthy diet consists of; appropriate amount of calories and balanced nutrients.

Thankfully, if you talk about boring stuff in an exciting and humorous way, it seems to work better. At least, with teenagers. Especially if you do not let up in talking about it. My kids often joke that teenagers will listen to me simply because I am intense, and relentless in my excitement.

Laying a training foundation

L came from a “stretchy” dance background, and stretching is precisely contraindicated for hypermobility. She liked to “stretch” or pop her joints when she felt tight, and this is seriously contraindicated with hypermobility. The start of helping her develop joint stability and mobility (motor control through ranges of motion) was first teaching her to be more mindful of her movements and resist stretching, pulling and putting her limbs in odd positions simply out of habit or stress. When she was more tired, she had the tendency to revert to those types of movement habits.

Those with hypermobility do not “hold themselves up” well, and tend to “rest on their joints” and soft tissue structures, because their resting muscle tone, and connective tissues are on the “weaker and looser” end of the spectrum. When you pair that with neural fatigue, you have the perfect storm for injury.

Postural strength, and postural endurance (maintaining good posture in more challenging or complicated exercise) was the first priority from a strength standpoint, after increasing her overall baseline energy levels slowly but surely (took about three months).

Postural strength, can be considered the first type of “strength” to develop, because it is the foundation from which we support our body in movement, and that ties back in to the ability to first “be still”, and move in ways that lead to increased stability and mobility, which will strengthen joints.  Your skeleton and muscles work together to hold you up against gravity. That’s the simple way to put it. Poor posture, or the inability to maintain an upright posture, limits the exercise skills you can learn, but it also limits how well you learn them. One of the most important goals of any exercise, is to progressively make “good posture” rather than “poor posture” your norm. This is of even greater importance for those with hypermobility because they are at a greater risk for injury to begin with.

Another observation when training L (and others with a lot of neural fatigue) was a substantial disconnect in understanding directional cues. Specifically; they physically interpreted directional cues, more often opposite to what the cue was. For instance, in some of our first sessions I tested her sense of right vs left, down vs up, forward vs back and her ability to sense her body  parts (knee, hip, arm, leg, etc). When I would say “move to the right”, she would often move to the left etc.

Her sensitivity to pain internally and externally was high, but her body awareness was often dysfunctional (her concept of what she was doing was opposite or reversed from what she did physically). She showed high reactivity to anything involving her left leg and knee, and I had to move cautiously there, as at times it seemed that her leg function was normal, but it would go back and forth, based on her overall fatigue and mindset for that day.

Our first sessions together involved very little “exercise” work. We talked a lot, and I observed a lot. And I started establishing some simple rules to first reduce the influence of her established poor movement habits, but also build a foundation from which to give her a way of judging “right” from “wrong” physically, individually, so that we could get to the fun stuff, like lifting and getting stronger.

Our training time together was a small part of her daily life, yet I needed her to NOT do certain things to make her physical state worse.

Cardinal rule #1:

BE GENTLE WITH YOUR BODY. DO NOT FORCE ANYTHING.

It is extremely disconcerting to the nervous system when limbs or joints are “forced” consciously or unconsciously “into place”, or through movement (consciously or unconsciously). Hypermobile joints often lack stability, and when this is the case, someone will compensate with jerky or overly fast movements, rather than fully controlled ones (mobility AND stability). This tendency makes for a perfect “injury prone” storm.

Motor control builds mobility (strength in full ranges of motion) and inhibits the damaging effects of high flexibility paired with low mobility (as is often seen in hypermobility).

Any type of progress requires consistent and long term acts of will or motivation, and that starts by approaching exercise and training from a positive, NOT a negative mindset, regardless of the severity of a physical situation. No forcing, no flinging, no jerking. I emphasized to her that this was as close to an absolute rule as I could get, and that throughout her day, she was to avoid ever forcing, or flinging of her limbs or being rough with her body (hitting her leg in frustration, manipulating her joints oddly etc).

Initially, what was “right” for her body positioning “felt wrong” to her (“ballet” habits no longer being appropriate), and I explained that this was also because she had become used to abnormal body positions from her time spent bedridden, unable to walk normally, and in a cast. Her left leg and hip had gotten used to not being used, and she had gotten used to not using it.

What was “wrong”  in position felt very comfortable to her by this time. I shared with her that this was normal and defaulting to that comfort especially when fatigued, was to be expected.

But, progress, I explained, requires pushing through significant discomfort in order to get stronger, and avoiding comfort strategies that regress rather than contribute to progress.

Out popped another rule:

Cardinal rule #2:

WHATEVER YOU DO, YOUR BODY GETS USED TO.

I gave her alternative options when she was resting between exercises:

  • Lay on the floor (propped her leg and head up initially)
  • Bounce on a ball

Instead of stretching, slouching, popping, flinging, etc when tired.

Since she struggled with staying still, to begin with, bouncing on an exercise ball (often together, to Justin Bieber! It is super fun!) was something I used a lot of when she needed a break from focusing on something more specific.

Discomfort is scary even when it is beneficial, so there were two things to address simultaneously; pushing towards more movement and effort without pain (as to avoid a physical fear response), and addressing and replacing the strictly mental fears expressed verbally that had no physical “proof” to accompany them, namely pain, or mental images of dysfunction (such as “it’s not in place”, “I feel it slipping”, “My back is out of place”).

L had a lot of legitimate fears built up because of her injuries, and there were still many “unknown” things she felt going on in her body, that were hard for her to understand because they did not have a simple, single explanation (such is the complexity of the human body!). I wanted Lucie to have a big picture view (with a positive tint) of the work she was doing, and avoid adopting any false beliefs about pain or “dysfunction” that did not have firm physical proof. No guessing!

We had to distinguish between rational and irrational fears, and I did so by questioning (rate your pain), observing and helping her observe what was happening with her body accurately (“your joint is in a normal position right now, even if it feels funny”), but also making a distinction between pain of injury (yucky pain) and pain of effort (muscle contraction or appropriate exertion).

What was “right” for her movement needed to feel “right” again in order for her to consciously move better. The goal was and always is to develop movement habits that would eventually move from highly conscious (thinking about form and position etc) to unconscious (not having to think about body positioning and “do it this way, not that way”, so she could focus on intensity).

What was comfortable for her at the start, was precisely what she needed to move away from. What was “wrong” needed to be labeled as such definitively, and what was “right” needed to feel right. This was tricky, but not impossible, and by keeping it VERY simple, and factual, the certainty of knowing “do this, not that” went a long way in helping her self-adjust without constant cueing.

Laying the foundation for motivation

L had very negative feelings about her leg in the beginning, unsurpisingly. She used words like “gross”, “disgusting”, “horrible” and felt her leg was uncooperative, and she “didn’t want it”. She had to deal with other people making comments at school and in social settings, and this was understandably upsetting to her. Her feelings were understandable, and accurate. Her leg, technically, would “not do what she wanted”. BUT, it was important that she not continue to reinforce this belief, and adopt a mindset about her body as a whole, that was accurate, but more positive, and inclusive of her limb, not exclusive (which would be dangerous to progress). Divorcing her leg from “her”, was not a good idea neurally, or cognitively, and would make regaining full function more difficult.

I told her straight up, right away, that she was not use negative language about her body parts, ever.

This produced cardinal rule #3:

BE ACCURATE, BUT POSITIVE, ABOUT YOUR BODY. ALWAYS.

The words we use paint a picture in our heads of who we are, what we are doing and why, and what L needed to build motivation to work and consistency was a constant reminder of WHY she was doing all this work and WHY she needed to. That need was being blocked by negative emotions directed towards a part of her that felt “not a part any longer”.

Her leg was hers, her work was hers, her progress was hers, as a whole. Disgust and negativity directed towards her left leg, constantly, was not useful (disgust, and shame can be useful for progress and change, but not in this context).

It is understandable, when suffering injuries, dysfunction et al, to have a negative view, because well, it is negative event! But progress, I would say, requires consistent acceptance of a negative reality (“I want this to change”), while working towards a better one and that requires a positive view of the future (“I can do this”).

Difficult, but not impossible.

Learning to train

Fundamentally, exercise is learning. Physical activity is not abstract. It is direct and measurable. You can do this, or you can’t. I think this is why it is a very attractive hobby for many, as well as one of the easiest doorways into “self-improvement”. You are your body, and you can use it in any way you choose. Learning a physical skill, physical art or sport, makes the process of learning very literal. Physical actions are as literal as you can get, and we all love that.

Physical improvements, also, are obvious to us, something we can identify and measure. But it still takes time. With consistency, physical progress can be apparent in weeks and months, even before years. But consistency is the key, because of cardinal rule #3. L needed to learn how to train with purpose, and what better purpose to start with than to have fun?

Having fun in “training” to keep training; building motivation

I disapprove of approaching training from a place of torturous obligation. I believe in working to want what is good for you, especially as it relates to daily habits that fulfill your basic physiological needs. Feeling good, leads to doing good, which leads to looking good and feeling good. That does not remove the need or requirement for effort, struggle and discomfort, but it simply paints the efforts we must make in a better light, and that builds the most necessary mental requirement for continuing something that is “good” for us, but still feels like work: desire to continue.

Something that is fun, we will desire more of. Fun is important. I was tempted to put “especially for teenagers or kids”, but the fact of the matter is that fun is important for everyone and anyone. And having fun in a necessary and beneficial habit like exercise. Having fun not only builds consistency, but builds INTEREST.

And interest, real interest, is what I would define as “having motivation”.

After the first motivational and consistency goals were reached in the first 3 months, her physical progress was continuous from then on out. I really emphasized to her the importance of not training tired, and sometimes sent her home to get more rest if the energy demands of her schedule were too much for that day. Guarding her energy was of paramount importance, because her energy levels would determine the quality of her workouts.

What type of workouts we did

Our workouts were very, very simple, and once the weather was nice, we alternated going outside to the park for a workout, with working out, indoors with weight training.

For mood, motivation and fun, outdoors often provided a much more pleasant environment.

When it comes to the exercises, they get pretty simple.

After improving her attention and energy levels so she could engage in exercise and also be able to follow instructions safely for weight training, the goals started with:

First:

  • Do a bodyweight squat

This first goal took the longest to reach, given her unique needs for training, but also, there is a lot that goes into the ability to squat with an upright spine, positioned properly over the hips while not losing balance. After that, things came along more quickly, though her ability level for any given day remained determined by her energy levels for that day.

Then:

  • Do an incline pushup
  • Hold a back extension 
  • Squat the barbell 
  • Walk 1/2 a mile on an incline without stopping

After almost one year of training, L successfully hit her exercise goals, and made the swim team at her school, despite doubts (mine included!). Congrats L, you did it! 

References:

1.) https://www.ncbi.nlm.nih.gov/pubmed/27761474

2.) https://www.ncbi.nlm.nih.gov/pubmed/14745505

3.) https://www.ncbi.nlm.nih.gov/pubmed/16305762

4.) https://www.ncbi.nlm.nih.gov/pubmed/17407233

5.) https://www.ncbi.nlm.nih.gov/pubmed/28915772

6.) https://www.ncbi.nlm.nih.gov/pubmed/14705238

7.) https://www.ncbi.nlm.nih.gov/pubmed/6334748

8.) https://www.ncbi.nlm.nih.gov/pubmed/21695667

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