Should nutrition be part of your holistic approach to EDS & HSD?

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"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:

• Increased breakdown of tissues due to wear and tear, or injuries big and small, leads to increased ongoing need for repair. I’m sure you know exactly what I mean…

• Decreased absorption of nutrients due to common digestive impairments and other reasons. (If you don’t belong to this group, count your lucky stars, because most of your fellow hypermobile people do.)

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.