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Let me start by saying, there is currently very little scientific evidence supporting the use of any supplements in hypermobility and Ehlers Danlos Syndromes (EDS).
However, emerging research suggests that people with hypermobility are at risk of certain nutrient deficiencies & altered gut health, and there is research supporting supplements for symptoms that people with hypermobility often experience. And from my experience in clinic, using targeted, evidence-based supplements can make a world of difference to symptoms.
Firstly, supplements are just vitamins and minerals, right?
Nope! While vitamins and minerals like Vitamin C, Magnesium & traditional multivitamins may be the first things that come to mind when we think of supplements (or when we walk down the aisles of big brand chemists), there is so much more to what supplements contain and can do.
Supplements can also include products which:
manage gut microbiome health (pre & probiotics, amino acids, herbal antimicrobials)
support digestion (enzymes, ginger tablets, digestive bitters e.g. Iberogast)
normalise bowel motions (soluble fibres, lactulose, laxatives)
assist in meeting macronutrient requirements (protein powder, MCT powder, hospital grade oral nutrition supplements, e.g. Sustagen)
assist hydration (electrolytes, salt tablets)
reduce inflammation (PEA, NAC, turmeric & more)
and many others!
Should I self-supplement?
Ideally no, although I understand that finding health professionals who are:
- a) understanding of hypermobility & associated conditions, and
- b) well versed in evidence-based practice for nutritional and nutraceutical supplements, and
- c) physically and financially accessible, can be VERY tricky.
What should I be wary of?
At some point, most of us have played around with self-supplementation. Below are a few thoughts that run through my head when prescribing supplements to clients:
Side effects - just because nutritional supplements are 'more natural' than pharmaceuticals, this doesn't mean they can't have side effects! While many are quite safe and well tolerated, quite a few do have risks of causing extra symptoms for a variety of reasons.
For instance, magnesium can lower blood pressure, which may worsen POTS in some, and many probiotics can flare up histamine intolerance. Berberine is picking up popularity for its mast cell stabilising properties, however it also acts as a herbal antimicrobial so can make people feel pretty awful as it changes their gut flora, and again can drop blood pressure.
Medication interactions - nutrients can compete for absorption with some medication, or alter liver function leading to changed medication metabolism. Check in with a pharmacist and your health care team before starting any supplements.
B6 toxicity - many off the shelf B Vitamin Complex & Multivitamins contain very high levels of B6, mainly in the form of pyridoxine hydrochloride. Over time, high levels of B6 can accumulate and cause B6 peripheral neuropathy (nerve damage outside of the brain/spinal cord), which can often be mistaken for a worsening of POTS symptoms or chronic pain. I see this pretty often, and highly recommend asking your GP to test B6 on your next blood test (make sure to stop any supplements containing this 48hrs before being tested).
Fillers - fillers, or 'excipients' are the extra ingredients mixed with the active compounds (the vitamin, mineral or 'useful' component of the supplement) to help improve shelf stability, texture or tablet shape. The trouble is, many of these (not so much in practitioner only products, but more so for their off the shelf counterparts) are tricky to digest or have the potential for triggering mast cell reactions in some.
Examples here are magnesium stearate (sounds good I know, but can be very tricky to digest) & potassium sorbate. Even some formulas with citric acid or minerals bound to citrate (magnesium or zinc citrate) can elicit reactions in very histamine sensitive MCAS clients due to the fermentation process used to make citrate!
Dosing - the dose, or amount of active compound per serve, can vary greatly between supplements or depending on how many tablets/capsules you take. Sometimes the dosing instructions on the bottle won't be the best dose for you. Taking too low of a dose can mean you see no benefits, and too high can cause side effects and interactions. Working with a practitioner takes the guesswork out of this.
Practitioner only vs Over the counter - practitioners have access to many supplement brands which most people don't. Through these, we are provided additional training to get up to speed on research in various areas, learn how to optimise dosing safely, and check in on case studies. The products in practitioner only ranges are SO much better than at supermarkets & chemists, as their formulas often have more absorbable & useful forms of nutrients, less reactive fillers and are in more effective doses. Meaning better outcomes for you.
WILL THIS TAKE YOU FORWARDS? (yes, in capitals, because this is important). There are many, many supplements out there which make various claims. And even more information online. It's so easy to wind up taking 10-20+ products which feel like they're doing something but you're not quite sure which helps or why. And they can cost a bomb. So if you're asking yourself 'will this take me forwards?' and you're not quite sure what the answer is or how it helps, there might be other more useful things that you can do or take.
So, what's the verdict?
As a qualified practitioner, I will always advocate for people to seek help from a qualified professional (e.g. Dietitian, Naturopath) with additional ongoing training in supplementation.
However, I understand this is not always possible, so if you choose to self-supplement for hypermobility & EDS do keep in mind the points above, and lean on your health care team to ensure that you are trialling these as safely as possible.
As always, reach out or book a discovery call online if you're interested in exploring what the best supplements could be for you, or to do a review of your current supplement protocol.
Savita
@hypermobility.dietitian
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