I wanted to take a moment today to go into what makes things so very difficult when you’ve got a connective tissue disorder and trying to exercise because whether it’s to just stay moving, lose weight, or reduce pain…it all boils down to similar issues. (This can also be why, even though you’re trying to help your friend WITH a collagen disorder, we can may tend to be a bit on the knee-jerk-angry-reaction side of things when you try to give us helpful suggestions.)
What’s The Core Issue?
A connective tissue disorder like hEDS means that our body has the wrong “recipe” for collagen. Collagen is the MAIN structural protein in your skin, ligaments, tendons, and many other areas in your body. Think of it this way; do you know those plastic rings on milk under the cap? Those are your ligaments. Strong, solid, and just flexible enough to allow for some movement. Now, do you know that thick, blue rubber band on vegetables like broccoli? Those are our ligaments. Thin, not as solid, allow for WAY too much movement, and a lot easier to damage with a lot less effort.
This is what causes our joints to easily hyperextend past the normal range of motion. While it doesn’t generally hurt to do it, it does still cause continual strain on those parts, just like continually stretching a rubber band to its limit causes strain. This also is what allows our joints to slip out of joint partially (sublaxation) or completely without needing a lot of force for it to happen as in a person with normal collagen. You can do a simple test of your own hypermobility by performing the tests on the Beighton Scale as the image shows below. Our joints allow for these movements easily, so please DO NOT try and force your joints to do these and if you CAN perform these easily…consider an appointment with your doctor to discuss your hypermobility.
How Does That Affect Your Exercise?
Syndromes like hEDS are a sliding scale and everyone has their problem areas, so it is a bit different for each of us. That being said, it affects our ability to exercise because we have to be as hyper-aware as we are hypermobile. Think back to the rubber band vs plastic ring analogy. Let’s take that and go further with it and use what seems to be everyone’s favorite suggestion…yoga. A lot of yoga deals with stretching, holding poses, and movement. It’s fantastic for so many reasons! It’s touted most for increasing range of motion and stretching out problem areas, but let’s look at that.
While there are many different types of yoga, remember back that our “rubber bands” already stretch and can tear easily. The “plastic rings” of the healthy connective tissue is what keeps the joints of a healthy person from slipping away from where they’re supposed to be and increasing mobility in a healthy and productive way while practicing yoga. This is REALLY IMPORTANT, the “rubber bands” we have don’t do this. Simple stretching can cause the muscles to move the joint away from where it is supposed to be, causing intense pain as well as damage to the surrounding tissue. This has less to do with “doing it properly” and more to do with “we’re not built right”. To give a more direct example, look at the simple stretch in the image below. Now, imagine that performing that stretch caused a rib to slip out of joint as well as the hip that is on the bent leg to slip and maybe even that knee when you try to straighten that bent leg again. And we’re just talking about easy stretching, not even into cardio yet!
So What CAN You Do?
It sounds pretty intimidating if you really think about it, but its not the end! First off, know your body and know your limitations. As stated above, syndromes such as these are a sliding scale so you have to be aware of your own problem areas. Second, discuss your options with a medical professional that is familiar with your situation if you can. I’ve had two incredible physical therapists over the years that have helped increase the strength of the tiny muscles surrounding the joint structures to compensate for my lax ligaments and eventually step up to increased ability to exercise! Third, try to learn to adjust and be excited for small victories and prepare for your progress to be slow going. Remember…you’re a zebra so you can’t expect to have progress the same way as a horse.
I know, that doesn’t go into any suggestions of what to do. That’s because there’s no one-size-fits-all suggestion. However, the important thing to take away is not WHAT you can do but to do what you CAN. Maybe this is only doing tiny little exercises that seem like you’re hardly doing anything for a year. Maybe this is swimming. Maybe this is walking. Maybe this is a stationary bike. Whatever you can do without causing further strain and risking injury to yourself? Be proud of yourself for putting forth the effort, no matter how small it seems or how slow the progress! Want to know what my “exercise” looks like for my legs? Something like this:
It’s tiny and unless you look closely you miss it. I’m forbidden by my PT from lifting my ankles any higher. That’s been my regulation for over a YEAR! So trust me when I say I understand how frustrating it is to not be able to do what you wish you could. I was a dancer, an archer, and a fencer and now I strengthen by lying on a couch and lifting an inch instead of some amazingly satisfying hard work. I won’t lie to you and say I’m always positive about it, but I will say that I’m able to walk for longer periods without subluxing a hip so I have learned to be overjoyed with the “little” things instead of focusing on the fact I will probably never fence again…or…trying to fence just to see if it still hurts only to cause an injury.
Sounds Like You’re Just Living in Fear and Making Excuses
Few things get me angrier than hearing a phrase like this. It an interaction where a phrase similar to this was uttered that motivated me to write this post if I’m honest with you. Constant suggestions of yoga and a myriad of other exercises that are considered “low impact” like bikes, ellipticals, light weights, and walking may seem like you’re encouraging. Most of the time, we even understand that you’re trying to help. But…sometimes we dislocate a hip by rolling out of bed or sublux a rib by taking a deep breath.
It also implies that all fear is negative an unproductive. You don’t have to be so afraid you’re trying to wrap yourself up in bubble wrap or never do anything enjoyable, but a healthy level of apprehension to your ability to perform physical activities will help you to stay more mobile for longer both in the short term and the long term of your condition.
Any physical activity comes with risk, even if you’re healthy. The difference with us zebras is that if we sprain an ankle on an elliptical…we’re not down for a week…we’re down for a lot longer and have a greater chance of surgery (which we shouldn’t be really subjecting ourselves to as I’ve said in an earlier post) than a person without a collagen disorder. Who in their right mind wouldn’t be a little bit more concerned about what they’re doing when it’s the difference between temporary pain and a high risk of permanent injury?
There is also a bit of victim blaming laced in statements such as that. Trust me when I say I would love nothing more than to go back to any of the activities I used to enjoy. However, I know even a low poundage compound bow poses incredible risk to the integrity of my shoulder joint. I could either be reckless and stubborn and try it anyway, or learn to accept the new limitations of my condition and make the effort to strengthen what I can as much as I can to ensure I have the use of my arm for as long as I can. Insinuating that not going and trying again is living in fear, is saying that I’m being weak-minded instead of working towards my best interest.
Statements such as these also insinuate that you are more aware about a person’s medical condition than they or their medical professionals are. I’m not saying that everyone is as hyper-aware as I am or that every doctor suggestion is to be taken without question. What I am saying is that if a medical team says “don’t do this thing for these reasons” and they’re known to be true or that if a person knows their hips easily dislocate…no amount of hopeful thinking is going to make it safe just because it’s low impact for a healthy person with normal collagen.
It is more important to try to live as best we can as healthy zebras instead of trying our hardest to pretend that we can be horses.
