Why physical therapy sometimes fails
Have you tried to improve the symptoms of your hypermobility through exercise, but failed to see results or, worse yet, ended up feeling even worse?
If this describes your experience with exercise, you are not alone. It is actually a fairly common complaint among those with hypermobility spectrum disorder (HSD) or some form of Ehlers-Danlos Syndrome (EDS).
Movement (aka physical exercise) is the only way to give the hypermobile body the stability and strength it needs to function at its best. Exercise also protects the body from both acute injuries and gradual wear and tear. Unfortunately it can be hard to get right, as the many who have tried but failed to reap the benefits of it can attest. The word ‘exercise’ is also often misunderstood to mean only vigorous movement, something strenuous, fast and exhausting. In reality ‘exercise’ comprises any and all movement performed for the purpose of increasing physical health, including the most gentle, barely perceptible exercise. The gentler end of the exercises spectrum is often a more appropriate starting point for the hypermobile.
There are also very few scientific studies documenting the effects of exercise for EDS. Due to this, we often have to take what we know about human physiology in general and combine it with clinical experience, when we treat hypermobility disorders.
Why would exercise, one of the most important interventions for musculoskeletal complaints resulting from excessive joint mobility, lead to pain in some individuals?
In my experience, the answer is that the exercise has to be specific to hypermobility and personalized according to the individual’s needs. It also has to progress in a certain order, and last for a long enough period of time.
Hypermobile bodies can change!
The hypermobile body, just like other bodies, does respond to stimuli. A more scientific term would be adaptation to loads. Muscle, bone, or tendon, when exposed to loading – which happens during exercise – grow stronger.
Rested, or unloaded, they grow weaker.
Building lean tissue – stronger bones and muscles – benefits all of us.
Increasing cardiovascular fitness, specifically the size and capacity of your heart muscle, is very important for hypermobile individuals as well, and even more so for those with postural orthostatic tachycardia syndrome, or POTS.
When thinking about how to become stronger you may think of strengthening exercise, aimed at increasing the strength and size of the superficial movement muscles– your abdominal muscles, leg muscles, arms muscles etc. Maybe you think of joining a gym, lifting some weights, doing yoga or trying some body-weight exercises.
But starting with strengthening exercise – which by definition means adding some kind of load to your body in various positions and movements – when your body and its joints are unstable, can potentially, often does, lead to injury.
Any structure - and that includes the human body – has to be sturdy enough to support and tolerate the weight placed on it. The better and safer path is to strengthen the weak structure first, to work on the intrinsic stability of the body’s joints.
When the inner framework is sturdier and more stable, adding additional load with the goal of building strength is safer.
What is ‘stabilizing exercise’?
But what in the world is “stabilizing exercise”, you may ask.
I’m glad you did!
Stabilizing exercise refers to activating a different kind of muscle, a kind you may not even have been aware of. Stabilizing muscles are typically small muscles that sit close to joints, too deep for us to see or feel them. They don’t tend to possess great strength, but are made of a particular type of muscle fiber that gives them endurance instead. This gives them the ability to, when well trained, work for you all day, helping you keep your joints stable.
They are essentially holding joints in place or helping them move correctly.
They also help keep us upright despite the ongoing force of gravity.
Stabilizing muscles help prevent small, unhealthy subluxations (a slight movement of bones out of their ideal alignment against one another) during movement. Strong stabilizing muscles also prevent fatigue in anti-gravity positions, such as when you’re standing, sitting, walking around etc. Examples of these stabilizing muscles would include the well-known rotator cuff muscles of the shoulder, a set of small, deep muscles that run up and down your spine called the multifidus, and the deep muscles of your pelvis and neck.
Many other muscles can contribute to stabilization, but fortunately you can get quite far with just a rudimentary understanding of these basic principles!
Why do we lose stability in the first place?
These muscles, like so many of our other muscles, skills and memories, operate under the “use it or lose it-principle”.
By the time we enter into our years of formal education we tend to sit more than move, and the weakening and shrinking of muscles is therefore underway. During our toddler and preschool years most of us demonstrate sufficient stability of the spine, effortlessly sitting and standing erect.
But our modern-day lives often include sitting our way through years of education, transportation, and sedentary entertainment, all of which weakens our muscles. We may start to find the effect of gravity overpowering, and gradually begin to sag a bit.
Those with stretchier joint structures tend to both sag more, and suffer more pain and dysfunction as a result of the sagging.
The ensuing pain and discomfort inhibits and weakens these important muscles further.
This in turn pushes us in the direction of less efficient compensatory postures and movement patterns.
Returning the body to what I like to refer to as our “factory settings”, (i.e. the natural and effective use of deep stabilizing muscles we so effortlessly demonstrated in our youth), can offer relief of much suffering. It can also offer a safe path forward towards eventually tolerating strengthening exercise.
While most individuals can progress much farther, some individuals may, owing to the unique challenges of their bodies, need to limit their exercise to this most basic, gentle stabilization work, but may still benefit greatly from it.
Starting with single-muscle exercises helps change movement patterns
The initial exercises aimed at improving lost joint stability can, and I would argue should, be very gentle. They can often even be performed while lying down, and are therefore also well suited for individuals suffering from fragility, POTS or fatigue. They should also never feel overwhelming, nor should they ever cause pain. They are usually appropriate even for individuals whose primary diagnosis or comorbidities make progression from this early stage challenging.
At this stage, it is also often appropriate and important to learn to isolate muscles through specific exercises in order to normalize movement patterns. When we suffer from weakness, instability and pain, our bodies, being the amazing survival machines that they are, tend to manage through compensation patterns.
In other words, we start to perform movements in new, less natural ways that are aimed at helping us manage despite the pain or weakness. These new patterns are never ideal, and tend to underwork some structures while overloading and causing trouble in others.
Knee pain is, for example, in hypermobile individuals often caused by weakness around the hip joint making us move with a waddle or an inward movement of the thigh bone.
Simply moving more tends to solidify, instead of fixing, such compensatory patterns.
In hypermobile individuals such overload of structures may be even more likely than in others to result in injury and pain. It is therefore especially important for people with HSD or EDS to learn to “find”, activate and strengthen weakened muscles in order to be able to once again move in a more natural, effective and safe way.
Your exercise should be specific for you!
It might be tempting, then, to line up exercises in something resembling a straightforward protocol, and guide hypermobile individuals through it step by step, gradually building up stability through the body. There is indeed some logic to this, and when treating hypermobile patients the practitioner certainly sees general patterns and stages.
But the variation among people with hypermobility-related disorders is too great for a cookie-cutter approach to be feasible.
The location and degree of joint hypermobility varies a lot from one person to another.
There may be previous injuries, positive or negative experiences and concerns, various degrees of experience with movement and exercise as well as various comorbidities. Our age, general health, sleep habits, diet and numerous other factors also contribute to unique starting points that lead to unique paths.
The physical therapy evaluation, which is an ongoing process during the time of rehabilitation, is aimed at uncovering these unique needs and strengths, and helping individuals work on their unique “weak links” at the pace best suited for them.
For those working alone, without the help of a professional, it is therefore important always to consider individual needs and capabilities before being inspired by a social media celebrity or a program or movement practice aimed at the general population. These generic approaches have not been developed with hypermobility in mind, and do not tend to be ideal for the unique needs that these conditions create.
Keep on keeping on!
Due to a number of physiological factors individuals with HSD and EDS tend to progress more slowly than others. Healing after surgeries and accidental injuries may be slower, and the results of exercise tend to be slower to show up as well.
It simply takes more time to reach a goal of strength and fitness when the initial need for stabilization is greater and the tolerance of exercise lower.
Not being fully aware of this fact, many hypermobile patients throw in the towel too soon, discouraged by their apparent lack of progress. Whether they believe they are on the wrong path, using the incorrect approach, or that their bodies simply aren’t capable of change, the end result is the same.
By giving up they are missing out on the opportunity to improve musculoskeletal health, increase functional capacity and decrease pain and suffering. It is therefore of utmost importance to both understand and continually keep in mind that the road to recovery and better function is going to be longer for the loose-limbed and bendy-bodied.
While this thought may at first seem a bit discouraging, consider this: first, if you are hypermobile, you will actually benefit from improving your musculoskeletal system even more than the non-hypermobile, even if it may take a bit longer.
Hypermobile individuals engaged in dance or other athletically demanding pursuits may also decrease their risk of injury, be able to perform at a higher level, and enjoy their art or sport longer.
Second: where are you going?
Once you’ve created better stability in your body, and are ready to move towards strengthening exercise, then you will hopefully….be doing strengthening exercise.
If you stop exercising altogether, you will simply lose the stability you worked so hard to create.
In other words, you will always need to be engaged in some form of regular exercise in order to feel your best. Whether you are working on stability, strength or, as most likely will ultimately be the case, a mix of both, you are devoting a certain amount of time, on a regular basis, to exercise.
So, please don’t feel impatient or in a hurry, and see exercise instead as a lifestyle choice you are making for yourself!
Once you’ve started, you are already there!
Setting goals
And with this thought, we have arrived at the topic of goals. On any journey, it is important to first know where we are going, and the rehabilitative journey is no exception.
Setting clear goals is both clarifying, guiding and inspiring, and helps you figure out both the how, what and the where.
For all, one of the goals will of course be decreasing or eliminating pain.
Since pain is the body signaling dysfunction, improving function will decrease pain.
Pain relief is not a goal separate from other goals, but rather a sign of poor function, and pain relief resulting from rehabilitation is therefore a sign of normalized function.
Actionable goals are functional and positive.
For some, the goal will simply be to decrease symptoms and prevent or slow down a degenerative process. For many others, the appropriate long-term goal would be reaching a bit farther: tolerating, and benefiting from, an ongoing practice of strengthening and cardiovascular exercise.
We can aim to not only maximize musculoskeletal function, but also, just like our non-hypermobile peers, benefit from exercise through the known disease-prevention and life-extension benefits that it offers.
For all of us, exercise, in all of its stages and forms, opens the door to a greater quality of life.
When approached correctly, with a full understanding of the specific and unique needs of the hypermobile body, a regular exercise practice is very doable.
It is also extremely rewarding.
Understanding how to do it safely, adhering to these five principles, with enjoyment rather than discomfort, seeing positive changes instead of risking injury and disappointment, is one of the most important strategies for living successfully in a hypermobile body.
Lilian Holm, PT, DPT is a Doctor of Physical Therapy with 28 years of experience. She has a private practice in Evanston, IL dedicated to the care of hypermobility disorders such as HSD and EDS. She sees patients locally in-person, and also offers telehealth visits. She also serves clients globally through personalized consultation services for hypermobility disorders as well as online personal training for hypermobile individuals. You’ll find her at www.lilianholm.com as well as on social media. Make sure to follow her on all of your favorite platforms like Instagram, Facebook, and Twitter.