"But it's a genetic disorder, so nothing helps!" Yeah, no. If I had a penny (or, given the rate of inflation, a dollar) for every time I've seen the depressing opinion that thoughtful nutrition or nutritional supplements are a waste of money for people with EDS and HSD, I'd be retired by now. The (misinformed, albeit perhaps understandable) thought process goes something like this: If the connective tissue "looseness" of generalized hypermobility is genetic in origin, and supplements and diet don't change genes, they can't help with symptoms of EDS and HSD. Fortunately this isn’t the case Here’s why this assumption isn’t correct: First of all, nutrition does affect genes, epigenetically. But that said, we typically don't eat well,and supplement various nutrients as needed, in order to change our genetic inheritance. (Have you ever heard of anyone supplementing to grow more tall, dark and handsome? No? Neither have I. Or maybe that was George Clooney?). We eat well and supplement in order to make sure our body has all the nutrients it needs available for it to perform all its various functions. What functions am I talking about, you may ask. Nutrients are needed to make ATP, the energy currency of the body, which we need for every single function in the body. Nutrients are needed for all bodily functions, all upkeep and repair, for absorption of other nutrients, for activity and rest. The body requires energy and nutrients, i.e. substances that once were your dinner (or supplements) and now have been broken down into their smallest component parts to be utilized for anything your body needs to do. An amazing system, really, if you take a moment to appreciate it. Comorbidities are not inescapable It’s common to assume that all the various co-morbid conditions so often associated with EDS/HSD are purely genetic in origin. Many have been led to believe that if you have been given one diagnosis the other will inevitably follow. But this isn’t necessarily the case. It is often more true to say that a hypermobility-related condition makes you more susceptible to something, but that does not – fortunately! – mean that the second condition is inescapable. As an example, headaches and migraines are very common among people with EDS/HSD. However, many have been able to free themselves of the curse of regularly silently suffering through days of pain by improving their mineral status (e.g. increasing fluid intake and magnesium and sodium levels) and correcting musculoskeletal dysfunction. But before we proceed, let’s define what we mean by the word nutrient. A nutrient is a substance used by an organism to survive, grow and reproduce. For us that would be our food, which breaks down into macronutrients, such as proteins, fats and carbohydrates (as well as water), and micronutrients such as vitamins and minerals. So what does this have to do with being hypermobile? To be healthy and feel well we all need to ensure that our body has access to the nutrients it needs to function. Two things make this especially important in EDS/HSD:
The increased need for stability – which, I regret to inform you, if you are a frequently symptomatic person with EDS/HSD you have probably not achieved yet – often leads to joint injuries, increased ongoing strain on various tissues, as well as more obvious acute injuries. All of these need to be repaired by the body, and repair means an increased demand for nutrients. Hypermobile individuals also often tend to spend more time in sympathetic nervous system (SNS) mode, aka fight or flight, and this uses up more of certain nutrients. Just check your pupils. If they are dilated, and you’re not sitting in a dark room, I’m talking to you here. Decreased absorption in the intestines due to common conditions such as SIBO (small intestine bacterial overgrowth, extremely common in hypermobility) can lead to nutrient deficiencies despite sufficient intake. Even feeling stressed at mealtimes can impair digestive function and decrease nutrient uptake! Nutritional deficiencies create the worst version of you Now, if your connective tissue is a bit weaker to begin with, as it is in EDS and HSD, how do you think nutritional deficiencies will affect it ? I’ll answer that: they are going to make you a weaker version of you. Your hypermobile tissues will be weaker, stretchier, less resistant to forces and more likely to be injured. You might feel more tired, have trouble sleeping, experience low mood and suffer from phenomena such as “brain fog” or “leaky gut”, which in turn affects your immune system, liver, and kidneys. You may feel anxious for no obvious reason, and in general seem to have lost your get-up and go. The list of symptoms and conditions that can be caused by a deficiency in a single nutrient can be surprisingly long. Vitamin B1, also known as thiamine, is a nutrient many hypermobile individuals are low in, probably primarily due to the fact that gut dysfunction is one of the cardinal signs of generalized hypermobility. Thiamine deficiency can manifest as any and all of the following: low energy, chronic fatigue syndrome, POTS, migraine headaches, poor cognitive function, fibromyalgia, anxiety, depression, low stomach acid levels and poor digestive function, poor motility and constipation, SIBO, abdominal bloating, pain, nausea, gastroparesis (slow emptying of the stomach), irregular heart rate, nerve pain, joint pain, long covid, diarrhea, leaky gut, autoimmune disease, allergies, tinnitus, memory loss and more. As is the case with many nutrient deficiencies, the symptoms can be so broad, and testing so rare and inconclusive, that they often go undiagnosed. And, to state what is perhaps obvious, nutrition is not a topic taught in medical schools, so the practitioner most patients turn to when symptoms crop up, the MD, is not even educated on the topic and therefore unlikely to realize what’s going on. Now, for the good news How would the opposite, nutritional sufficiency, affect you? It would help in your efforts to manifest the best possible version of you; stronger, more energetic, calmer, more focused and clear headed, happier, able to digest food better and be more able to tolerate physical activity and build stronger, more resilient tissues. Longstanding nagging complaints that you’ve been dealing with for years might improve. You might realize that it wasn't “just you getting older” after all. So even though good and complete nutrition doesn’t give you “non-hypermobile genes’, it does absolutely affect you positively in all the ways listed above, and many, many more.You’ll still be a hypermobile person, but a happier, stronger, more well-functioning one, and that's nothing to scoff at. So, how do we get there? If you are feeling tired, brainfoggy, bloated and achy reading this, you think I’m full of it and may demand to know how on earth you can achieve this state of wellbeing. The answer is: gradually and deliberately. (You weren’t expecting an overnight miracle, were you? All real and lasting change is gradual) You need good lifestyle habits in general, of course, but as far as nutritional sufficiency goes, it all starts with good choices; real, unrefined food and pure (mineralized, especially if you have POTS, water). Your nutritional sufficiency also depends on digestion. We’re told that “we are what we eat”, but a truer statement would be “we are what we eat AND digest AND absorb”. The food and supplements that you take in have to be broken down in order to be absorbed into your body and put to good use. This is where some professional help may be in order. Health-related problems are like dominoes. Once the first domino falls, it causes a chain reaction of other health problems, and sometimes it takes some professional assistance to tease out the root cause and correct it. But no matter how little or how much we need to do in order to improve our nutritional status, it is well worth the effort. No other interventions and treatments, whether exercise, medications, psychotherapy, lottery winnings or anything else can work well in a person suffering from nutritional deficiencies and all the varied forms of ill health and poor functioning it leads to. In a healthy “terrain”, a healthy, well-fed body with healthy thoughts, on the other hand, interventions can take root and benefit us greatly. Let’s give our bodies and minds the best possible chance to serve us well today, and for the rest of our days! Like it or not, this life in this body is the ride we’re on, so let’s make the best of it, and forget the naysayers. Nutritional sufficiency benefits all of us, including – and perhaps especially! – those of us with EDS/HSD.
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 Creating a much - needed roadmap to better health for your unique body Houston, we have a problem Does it ever feel like you wish you had been given an Owner’s Manual to your hypermobile body? After all, it often seems like the Regular People’s Owner’s Manual, i.e. what usually works for other people, does not apply to you. Unlike organ-specific ailments that are managed by medical doctors and other healthcare professionals specialized in them, joint hypermobility-related syndromes like EDS/HSD seem not to have the best PR department. Even though they affect most organs in the body, they do not have their own medical or other specialty. How is that even fair? This can leave the hypermobile individual without a good source of information about the condition and how best to treat it. To add insult to injury, healthcare professionals in general aren’t being taught much at all about hypermobility-related conditions, and are therefore usually not able to guide you in how to best care for your body. Instead, you’ll be receiving a whole lot of “normal people” care, and this may not always be a good match for you. Worse yet, much of the necessary help and information is not even covered by health insurance. But I’ve had lots of tests and my symptoms are managed, sort of.. Within what is covered, you may be getting prescriptions and lots of tests and treatments, but are they really tailored to your particular body? Are they really helping you get better, function better and feel better? Usually not. At best, they may help you suffer a little less from your symptoms, while the underlying issue remains unchanged. Not the best deal in town, if you ask me. Whether we like it or not, having EDS or HSD (I usually think of hypermobility on a continuum) therefore requires a much more active stance. Unlike some diagnoses where it may be a bit more safe to kick back and rely on what the good doctor says, EDS/HSD patients who become “patient experts” tend to fare the best, whereas those who seek out one doctor after another, building an ever-growing list of orange Rx bottles on their nightstand without a proportionate alleviation of symptoms, often tend to get stuck in a rut, many gradually even doing worse instead of better. This downhill slide is fortunately not necessary. Our bodies just need the right kind of care instead of the run-of-the-mill treatment. Kind of like your goldfish needs goldfish food, and not birdseed. "Writing" your owner’s manual (no, not literally, unless of course you're into taking lots of notes) So what would the process of “writing your owner’s manual” look like, and what does it even mean? And more importantly, how can it help you? What I mean by this expression (and if you think I should have thought of a better term, create your own name for it and let me know what you call it!) is that you and your body are unique, and different from the average body, and you need specific “instructions for use” (nutrition, exercise, lifestyle etc). By learning as much as you can about hypermobility disorders in general, and observing your own unique body’s reactions in particular, you can start to understand and prevent (or better yet, get out of!) problem spots, and start to build on improved health. Instead of staying stuck, with only short term relief options as your go-to for dealing with life in a hypermobile body, you learn to understand the why behind your symptoms, and can go to work on eliminating the problem. Knowing your body can also help you avoid the common pitfalls of being prescribed forms of treatment that actually make you feel worse, instead of better. Here are some examples:
Your physical therapy sessions should also be an ongoing learning experience that helps you write your mental owner's manual. In order to get the most out of this opportunity, make sure top stay curious. A good healthcare professional welcomes questions! S/he may even love the opportunity to pontificate on a favorite topic. An ever- growing manual By now I hope you’re starting to see how useful an individualized approach can be. This approach sees you as who you actually are and can help you feel better in your body on oh, so many levels. You can’t become an expert overnight, nor do you need to, but by continually seeking information from a variety of sources, and having in-depth conversations with knowledgeable providers, you can over time write your manual, page by page, and lead a more empowered – and hopefully easier and more enjoyable – life in your hypermobile body! And keep sticking it to rude doctors. (Keep the nice ones, though!) |
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