Joint hypermobility disorders are actually body-wide disorders caused by alterations in connective tissue structure. For most individuals with a hypermobility disorder like EDS and HSD, some of the most noticeable and limiting symptoms are musculoskeletal. Not surprisingly, the diagnostic criteria of hEDS also center around musculoskeletal manifestations.
Physical therapy (PT) is the most direct intervention, and therefore a logical choice for managing and improving musculoskeletal symptoms in hypermobility. It is the key to unlocking better health and function, while also empowering patients to understand and better manage their hypermobility in the long run.
For some, however, the end result of a course of PT isn't quite what they expected or hoped for. This constitutes a truly unfortunate loss of opportunity, but some guidance can usually help us avoid a negative outcome. Let’s look at some of the reasons why PT doesn’t always lead to good results such as relief of pain, improved function etc, and more importantly, how we can maximize our chances of achieving our goals. And if you’ve fallen into any of these pitfalls, please don’t feel too bad. Even most healthcare professionals aren’t taught enough about hypermobility-related conditions to watch out for them. Ask yourself the following questions to see where and what you can change to maximize your odds of success!
If you can't find a hypermobility-savvy physical therapist in your geographical area, you can work with a therapist online, from the convenience of your home. This is probably a better idea than attempting rehab with an otherwise excellent PT, who may not be familiar with generalized joint hypermobility and your unique needs.
2. Are you moving too fast?
Our bodies change at a certain rate, in part dependent on how closely we follow treatment recommendations, degree of hypermobility, starting point in rehab, our age, dietary quality, sleep quality etc. Make sure you’ve conquered one stage before you move onto the next. Skipping ahead may, like in a game of chutes and ladders, lead you right back to Start, instead of propelling you forward.
3. Are you doing enough?
Most patients overestimate the speed at which their body can change, and underestimate the work it takes. I know, I, too, wish things would be a lot easier and more convenient! Look at it this way: In order to be – and remain! – healthy and functional and free of major injuries we all, hypermobile and “regular people” alike, have to be physically active enough on a regular enough basis. So whether you’re gradually climbing up your rehabilitative ladder, or staircase, if you will, you should be performing exercises on a daily basis, or at least moving daily and performing appropriate exercises on alternate days. The only difference is the exercises you are performing!
4. Speaking of staircases, are you progressing?
A very common mistake is seeing the home exercises your PT gives you as a “one and done” set that you’ll be performing for a while, or perhaps indefinitely. Understand that your first exercises are only the very beginning. Our tissues grow, and our nervous system learns, gradually, not overnight, and one function in our body depends on the proper functioning of another. Because of this, PT should instead be understood as a gradual progression towards your ultimate goal, where you move from one level of difficulty to the next. An analogy would be school, where you are moving from one grade to another based on the completion of each grade level. You could also see it as a gradual climb up a staircase. You neither want to stay stuck on the lower steps, nor try to skip steps and risk tripping and falling down to the bottom of the stairs.
5. Did you take your exercise medicine as prescribed?
Just like prescription medication, the therapeutic exercises your PT gives you are prescribed precisely in regards to type, load, frequency etc. Engaging in what I jokingly call “a la carte PT” –- picking and choosing among your exercises and performing each individual exercise irregularly instead of with the recommended frequency -– will dilute the effects of each exercise, and keep you from achieving your goals. Remember, each exercise has a very specific goal, and performing it as prescribed is important.
6. Did you give up?
One of the most common and also most fateful PT mistakes is giving up. Believe it or not, the majority of people do not complete their PT. They expect changes to be rapid, and have a hard time sticking to a regular routine of performing exercises. Again, the body changes at a slow pace, and the first improvements you should expect to see are not typically pain relief, but a gradually increasing ease of performing your exercises. Pain is the body’s voice, and it is asking us to change something. Until we have corrected whatever the body’s symptoms are "talking" to us about, we should not expect to be pain free, but instead, as surprising as this may sound, even be a little grateful that the body does have a way of telling us about malfunctioning, so that we have a chance to institute changes before it’s too late.
7. Do you believe in “no pain no gain”?
A common belief is that PT has to hurt. But the body is not an adversary to be conquered, but a friend in need. As a matter of fact, it is a friend that has faithfully served us, despite suffering from various problems. One of the first things I tell my patients is that no exercise I give them should hurt, neither while you're performing it, nor afterwards.
A typical patient with a hypermobility condition enters into PT with a lot of tension, apprehension, dissociation (“tuning out” of the body in whole or in part), stuck in some degree of sympathetic nervous system overdrive (“fight or flight”), with a limited belief in his/her body’s ability to change, and with lots of habits and movement patterns that work against long-term goals. As you can see, there’s a lot that needs to change. But that also means that there is a lot of opportunity and a lot of room for improvement!
8. Are you conflating 'exercise' with 'workouts'?
This is another very common obstacle to success. Conflating these two concepts leads some to feel that they must "work out" to get better, no matter how much it hurts, and makes others avoid all forms of exercise, even appropriate ones, at their own peril, because they've been warned not to work out. When symptoms are prohibitive, working out in the traditional sense may indeed not be a good idea. But the concept of exercise is actually a very wide umbrella under which we sort everything from the most strenuous workouts to the most gentle forms of muscle isolation, breathing techniques, gentle stretching etc. Therapeutic exercises can be adapted to any situation, need and condition, and gradually progressed as appropriate, and this is usually where the symptomatic hypermobile patient should start.
While some may feel some resistance when getting started with, and specially sticking to, a rehabilitative program, things do get a lot easier once you've created a habit of adhering to your program. Research shows that repeatedly choosing to do something because it is the right choice, even though we might not quite feel like doing it, actually strengthens the part of the brain connected to willpower (1). The power of habits is a very helpful ally! Envisioning your long-term goals, remembering why you are doing this, and focusing on feeling gratitude for the fact that you actually can effect change, can also be very helpful.
None of us know what our maximum capacity actually is, and most of us underestimate it. We should therefore be careful not to set any artificial limits for our improvement. Sometimes the official diagnosis of Ehlers-Danlos syndrome or another hypermobility-related condition feels like such welcome validation and a relief (“I’m not an anxious malingerer after all, like I’ve been told!”) that we risk falling into a set, predetermined role that may include unnecessary limitations. Dare instead to dream a little, aim for a body that functions and feels better, but dream like a turtle, of gradual, thoughtful progress. After all, as the parable tells us, this is the way to win the race!
1) Torotoglou et al. The tenacious brain: How the anterior mid-cingulate contributes to achieving goals. Cortex. 2020.