As a hypermobile person you may be used to feeling different. Your balance may be less than impressive; your joints and muscles ache for what seems to be no good reason; and, yes, it’s your hips making that clunking sound when you’re trying out the latest exercise your more normal-jointed friend is excited about. You also experience a vast array of non-musculoskeletal weirdness that never ceases to mystify you and those around you. You may by now be well aware that you need a different approach to exercise than others, focusing much more on stability than marathon running, and your collection of splints and special pillows has been growing at an impressive rate. With all of the special attention that your body seems to be demanding, it is easy to forget that it is, still, a body that requires and benefits from the same loving care and attention that human bodies, in general, do.
As a matter of fact, your body may benefit even more than that of your less bendy friends from supporting its basic functions.
Let’s review the four cornerstones of health: sleep, diet, exercise and mind management and some of the ways you can help your body serve you well. Please note that the following is a general overview and not intended to be a comprehensive list of all the comorbidities associated with HSD/hEDS, but rather as a reminder of the importance of general, supportive health practices.
Your soft ligaments, joint capsules and tendons are less able to protect themselves and more easily sustain small injuries, so called micro-injuries. While your spouse or friends seem to get away with a lot of slouching, following their lead reflexively triggers your muscles to work overtime. Your nervous system is straining to maintain homeostasis and your blood circulating in your stretchy veins. Night-time constitutes a well-deserved break for your hard-working body! Deep sleep is when tissues rebuild and repair themselves, and sleep deprivation therefore impairs your body’s ability to sufficiently regenerate tissue overnight. Accumulating, un-repaired, tissue damage leads to pain and soreness, and may even over time contribute to a diagnosis of fibromyalgia. Artificial light at night, the light pollution that seeps through our curtains while we sleep, has been found to contribute to breast and prostate cancer, obesity and depression.
Sleep is also a time for your brain to recover from the events of the day, and for learning (say of those balance and stability exercises you’ve been doing) to be consolidated into long-term memory. And honestly, the very last thing you need when dealing with the demands of a hypermobile body and chronic pain is one of the most reliable outcomes of poor sleep quality, the significant negative effect it has on mood.
So here, shortlisted for your convenience, are the ingredients of a good night’s sleep:
- Expose your eyes to bright light first thing in the morning and during the day.
- Eat during daytime hours, not late at night.
- Avoid bright, “blue” light after sundown. Instead, use orange light bulbs in your fixtures and wear orange glasses to shield your eyes from the light of the TV or other backlit screens. They even come as clip-ons for your reading glasses!
- Sleep in a completely darkened room. If you can see your hand in front of your face, there is too much light. Blackout curtains are your friend!
- Keep the bedroom cool and your sleep schedule predictable.
- Use a mattress that supports your body well enough that soft ligaments and joints don’t get pulled during the night. Turn it around periodically to ensure that it remains supportive and keeps your body from sinking into the mattress and over-stretching during the night.
- Use only natural sleep aids, if needed. Good habits, calming herbs, and supplemental glycine (a sweet-tasting amino acid that at a dose of 3-6 grams at bedtime deepens sleep and helps build collagen) are better than pharmaceutical drugs. Sleep researcher Matthew Walker, PhD, at University of California, Berkeley, cautions that drugs do no create true sleep. Some nervous systems may, however, may need drugs to calm them down, so don't discount any options altogether.
Put simply, your food gives you the building blocks that your body is made of. Genes that code for softer connective tissue seem to be implicated in hypermobility disorders such as HSD (Hypermobility Spectrum Disorder) and hEDS (Hypermobile Ehlers Danlos Syndrome). The softer connective tissue is itself more easily damaged by over-stretching, and also puts the joints and muscles it is meant to protect at risk. This creates an increased demand for effective healing of tissue. It is therefore important to make sure that your body has a steady supply of the necessary building blocks needed for tissue regeneration.
The most important building block of connective tissue structures is collagen, the very fiber that makes your body different. Moderns diets tend to contain less collagen than traditional diets, and collagen supplementation can therefore be a safe way to increase collagen turnover.
Vitamins C and D are also needed for collagen synthesis, and supplementation of these micronutrients may be beneficial.
Hypermobile people often suffer from gastro-intestinal (GI) manifestations of the softer connective tissue and associated disorders, such as delayed stomach emptying and slower motility — the movement of the food through the GI tract — leading to discomfort, bloating and constipation. Eating smaller portions, avoiding snacking, and allowing your system a break from eating through a long overnight fast can be helpful. Ginger is a safe and tasty root that improves gastric emptying and motility and can be used both as a tea and a supplement in capsule form. Overweight is never healthy, and with a hypermobile body it can cause additional problems. Extending the overnight fast to 12-14 hours, and especially for men, who seem to tolerate longer fasts better, up to 16 hours, can be a simple way of improving insulin sensitivity and your body's ability to handle energy.
Many hypermobile individuals notice increased thirst, especially when under stress. Blood pooling in the lower half of the body may trick the kidneys into thinking there is too much, when there is actually too little. Chronic dehydration, fatigue, headaches and dizziness can also be a sign of Dysautonomia. The softer bladder may both signal the need to empty it more frequently, and also empty less completely. This can predispose the individual to UTIs, or urinary tract infections. Drinking a lot of water can be helpful in diluting the urine in the bladder and potentially help prevent UTIs, but can also dilute the electrolytes in the body, leading to a vicious cycle of increased thirst and increased dilution. This can in turn exacerbate symptoms of feeling faint and dizzy when standing up due to orthostatic hypotension or POTS. Adding minerals or electrolytes to your drinking water can be helpful. Some electrolyte brands even come with small travel bottles that are easy to carry in a purse or pocket. Salting your food generously, adding salty foods like olives and pickles, and even taking salt as a supplement can all be of great help. Sodium has been demonized and many initially fear adding more to their diet, but when it ameliorates symptoms without elevating your blood pressure you have little to fear from this important mineral.
Our bodies are designed with the expectation of movement, and simply cannot stay healthy and function well without it. This is just as true for hypermobile individuals as it is for others, but hypermobility presents an added layer of complexity for the would-be exerciser. While it is true that all human bodies require stability, hypermobile bodies rely more heavily on muscles for both proprioception and balance and joint stabilization. If the muscular system faces this challenge untrained, certain muscles are likely to be overburdened and become tight and sore, while leaving joints poorly protected.
Instead of simply looking for a type of exercise that seems like fun, we should create a body that is prepared for exercise. The best place to start is with slow, well-controlled exercises that first stabilize the pelvis/spine/trunk, and then the shoulders and hips. Be aware that while the neck is simply the upper part of your spine, it is also closely connected to your shoulder girdle and therefore affected by any tightness and weakness in this area.
The most effective way to approach this is through an individualized program based on therapeutic exercise and natural, functional movement, prescribed specifically for you with an understanding of your specific needs, and progressed as you improve. This program should also contain a strong focus on balance and proprioception, and not be seen as a static set of exercises, but a gradual, progressive challenge to your body to help it serve you well. Attempting to meet your individual and specific needs through generic movement programs, however popular, may not be quite as effective. Hypermobility is a trait that can have serious consequences and should be treated by degreed healthcare professionals with a thorough understanding of the human body and familiar with the particular set of traits characteristic of hypermobility.
The most fruitful way of seeing any challenge you may have is not “my diagnosis explains my symptom and condemns me to always have it” but rather, “my diagnosis informs and inspires me and means that I have to work even harder on helping my body function optimally”.
Which leads us to the mind.
Just as a hypermobile body means that you may have to pay more attention to exercise than the average person, the added challenges you face also mean that you will benefit more from actively controlling your mind.
The quality and quantity of your sleep is, as mentioned, the sine qua non of a positive mood. Creating an internal locus of control, a sense of empowerment and of not being at the mercy of others, is another important cornerstone for good mental health and thriving. Information is one of your most important tools in this quest. Understanding, not just the basics of your diagnosis, but the repercussions of it for your body in general, is important for your ability to understand and manage symptoms. Hanging your hat on the hope that someone else, some expert, will give you the key to feeling good is looking for fool’s gold. Experts are invaluable as a source of information, but no-one will ever care as much about or know as much about you as you do. Stay on the path of learning and experimentation, gradually adding good habits and beneficial practices to your life as you go. Set goals and be proactive instead of reactive. Simply reacting to pain and dysfunction can feel hopeless and disempowering, while creating a plan for gradual growth and improvement is inspiring and helps you gradually reach functional, meaningful goals.
Joint hypermobility is strongly correlated with anxiety, even in animals. This correlation is probably, at least in part, if not entirely, the result of over-activity of the sympathetic nervous system (the “fight or flight” part of our nervous system). Consciously seeking to counteract the potential negative effects of this on our mood and body is arguably an important part of hypermobility self-care. Calming and centering practices such as meditation, slow breathing, slow walking (a pace of under 3 miles/5 kilometers per hour), and slow, repetitive activities, (e.g., knitting, reading, or t’ai chi, can support the parasympathetic (“rest and regenerate”) part of our nervous system.
The synergy of the four cornerstones
It can be tempting to focus on one of these cornerstones more than others, for example seeking information more than relaxation. Some people rest too much and exercise too little, while others tend to do the opposite. The four cornerstones of good health are, however, synergistic in nature. Sleep is what allows your body to benefit from exercise, retain information and good mood. The dietary building blocks allow you to build and repair connective tissue, and your exercise trains your body to put these tissues to good use. Creating good habits and achieving a good balance allow you to manage problems, improve, and even thrive.
Gather information, become informed, use experts as teachers and guides, but always remember that you are in charge. The path is yours and yours alone and you have a greater influence than anyone else on where it will take you!