Hypermobility is a spectrum disorder: its not all about subluxations!

There’s a very classic view of what hypermobility syndromes are or look like…in the case of hEDS, many joint subluxations and the like; basically, symptoms that affect joints, not taking into account a whole other range of symptoms that can often present themselves as well as, or instead of, major joint issues. Also a persistent viewpoint, maintained by GPs, that it is a rare condition (by the way, it really isn’t so rare, especially when you include hypermobility spectrum disorder (HSD) with all the other types of EDS, data now suggests at least 1 in 500 rather than 1 in 5000 as previously thought, so that needs bringing right up to date). Therefore, when you present to your doctor with what you believe are hypermobility issues, they are likely to ask you how often you dislocate your joints and also assume that you’ve picked up the idea of some rare condition off Google because you are the kind of person who looks for obscure conditions to attach to yourself.

However, take this from someone who is quite convinced of their own hypermobile track record (going back through all of my life…although, as is sometimes typical of the largely female cohort of individuals that have this group of syndromes, signs of my hypermobility only became too overt to ignore from perimenopause onwards). Also as someone who has hyperfocused on gathering every minutest piece of research, anecdote and hearsay about hypermobility syndromes for the last few years; hypermobilty can cause perplexing and seemingly unrelated symptoms in every system in the body, without necessarily having a joint out of place at all!

This is because, and I’m hearing this a lot from the real experts of hypermobility, being those living with it or who are treating it at the grass-roots level, hypermobility (like so many of the neurodivergencies) occurs on a spectrum. Yes, joints popping out of sockets may be at one very obvious end of that but there are a whole load of other signs and clues and I only wish they had been easier to decipher when I was first experiencing them from my 30s onwards or, really, going back as far as puberty. Because going through the experience of a body that has tissue laxity going on at all the various levels of body function can be a frightening, bewildering and lonely experience.

Worse, there’s another sting in the tail, being that people may even congratulate you on being more flexible than your age cohort, or for having lower blood pressure when the popular view is that only high blood pressure is dangerous as you age (wrong!). When I finally got to see a specialist for assessing my status as someone with years of worsening fibromyalgia behind me, he confirmed the condition but told me I didn’t have it all that bad since I could touch my toes and grasp my hands behind my back…missing entirely that this unusual flexibility of someone in their 50s, which was clearly not to do with my having worked-out a lot like all the other most bendy women of my age group (since I had been sofa-bound for quite some time when he saw me and doing limited exercise for years prior to that) was to do with the underlying hypermobility condition that was feeding into all those decades of chronic pain!

Not being heard or believed is often a huge factor of hypermobility syndromes. Diagnosis can take years from first presentation of symptoms (I heard that it takes on average 12-15 years, the average age being in your 30s though it took till my 50s to even self-diagnose!) and all that gas lighting from medical professionals can cause a very real case of PTSD that haunts you for as long as you continue not to be taken seriously. Self-diagnosis might be the only option for making appropriate modifications to your life, a lot like self-diagnosing with autism and ADHD, until it is a much more commonly accepted and researched factor of health than at present. If this feels like you, don’t keep doubting yourself, explore.

What I’m saying here is that you could be presenting with weird and wonderful gastrointestinal symptoms combined with, say bouts of ever worsening exhaustion as you go through your middle years and yet not a sign of subluxation in sight; still, hypermobility might be worth considering as a culprit if any of these telltale signs (below) crop up, especially if its not something you’ve already focused your spotlight on before. Do some self-enquiry (resources below) and see where you get to; don’t just wait for a rubber stamp from a professional.

Here’s just some of the common symptoms and traits of hypermobility that I am aware of:

  • Things often hurt “for no apparent reason”
  • This gets worse and worse with passing years (but may well have started when you were a kid at school…were you considered a whiner or lazy/clumsy at PE and did you have growing pains?)
  • Numerous GI issues (see below)
  • Slow gut motility
  • Frequent fatigue (of the kind that makes taking a shower or writing a one-line email response feel like its the toughest thing you ever had to do)
  • Brain fog
  • Fluey feelings that come and go all the time
  • Generally feeling unwell or “off” in ways that are hard to find words for
  • Feeling especially exhausted when upright, especially standing
  • Pelvic floor issues and prolapse, feeling of organs pressing on each other
  • Bladder and rectum inflammation and other problems that don’t resolve
  • Disautonomia including POTs and bouts of low blood pressure
  • SIBO that persists beyond efforts to resolve it (EDS can be an underlying cause)
  • GI symptoms that get worse at times you notice other hypermobility signs (or when there is no other apparent trigger)
  • Gut motility issues, food sensitivities and issues with large portions
  • Mast cell issues
  • Food intolerances and none of the diets/strategies seem to work
  • Seasonal worsening of symptoms (lowered levels of vitamin D may play a significant part)
  • Finding it extremely hard to amp down your constant sympathetic overdrive
  • Overactive/sensitive nervous system, muscle spasms etc
  • Rigid, hyper-protective muscles that seems to be braced all the time (these can be overcompensating for lax connective tissues)
  • Joint pain that doesn’t seem to conform to osteoarthritis norms
  • Problems with feet, difficulty choosing shoes and a preference for high-tops and arch support or bouncy shoes
  • Fussiness over clothes styles and fabrics, a preference for clothes that are lightweight but supportive
  • In fact craving compression, preferring clothes or bedding that hug
  • Problems with bras!
  • Episodes of swollen glands, sudden build up of body odour or skin breakouts, intracranial hypertension, intracellular pressure etc.
  • A mind that goes a million miles a minute, can’t ever switch off
  • Reacting strongly to medication
  • Needing more dental anaesthetic than usual
  • Variable vision issues such as blurriness, extreme eye muscle tiredness or odd sensations in the eyes (phantom grit etc); retinal detachment can also be a clue
  • TMJ pain, gum issues and loose teeth
  • Issues with swallowing
  • Weird skin crawling, stabbing, burning and other sensations that move around or come and go
  • Extra soft skin and lack of lines, sensitive skin, allodynia, easy bruising
  • Thinning or sparse hair on head and body
  • Neuropathy that isn’t necessarily consigned to extremities such as feet and hands
  • Problems with thermo-regulation
  • The sedentary lifestyle that your pain and energy levels seem to dictate making symptoms even worse if you succumb to it
  • Princess and the pea syndrome when it comes to having the right mattress and strong preferences about the position you sleep in
  • Similar with chairs; worrying about seating arrangements in advance of theatre, social events etc.
  • Fussiness over types of bags we carry
  • A preference for elevating legs
  • Feeling odd or alien in your body, as though something isn’t ever quite right
  • Anxiety or depression that you suspect is really due to having had to endure just so many negative experiences

Let’s pick out a few of those items to dig in further:

Neuropathy and sensory “hallucinations”

As mentioned, small fibre neuropathy can occur in highly a-typical presentations with hypermobile syndromes, meaning it doesn’t necessarily happen somewhere logical such as hands or feet a long way from the heart but in any patch of skin or flesh literally anywhere on the body, delivering sensations that feel weird such as wet, burning, insect-crawling sensations, itching, tickling or like a piece of glass sticking into your flesh. This can last for just a very short while or perhaps a phase of a few days and can be so extremely perplexing, especially if you don’t realise it’s to do with hypermobility.

Its not all in your mind, but you do have to run this check-over of yourself to assess are you “just” generally more hypermobile at the moment, thus having an episode of random nerves firing off, caused by laxity, or is it something more serious that you need to get checked out. I have been having such an episode lately and am having to keep a close eye on it to make sure that its not something more alarming that needs addressing but then I am so used to having the weirdest of symptoms come and go that is hard to take them too seriously, impactful though they are at the time.

There is some opinion (see article as an example) that these kind of symptoms can arise from cervical instability and I personally suspect they can be triggered by any point of laxity that triggers nerve compression or issues with blood flow in the body, at every level of operation, setting off symptoms that may feel as though they are deep inside your flesh or even inside an organ yet all to do with this one root cause…your body tissue doesn’t have the same integrity as the next person’s and sometimes misbehaves.

Another oft asked question (one I often ask myself since I have it) is whether the same kind of thing could be responsible for tinnitus in some people with hypermobility. I very memorably had a session of cranial adjustment once that managed to turn off my tinnitus, albeit for a very short time, but it was interesting that it was even possible through manipulation of neck and head.

Feeling “off” or alien in your body

Not feeling at home in your body or as though you are alienated by it seems to be a classic presentation of hypermobility. One phrase I heard used in a podcast discussion was that it sometimes felt as though a joint was homeless (as in, just not quite connecting as it was meant to do) and I can relate to this feeling throughout the body. It can be incredibly difficult to find the right analogies to help express to others the least relatable sensations of hypermobility, when the person you are speaking to has never experienced it for themselves, and those we pluck up the courage to share with still might look completely perplexed, not grasping what we are trying to describe (even worse when trying to explain to medical providers whose help we hope to recruit). Our normal is simply not their normal and vice versa, plus ours only seems to get more complex and perturbing with age. It feels like I spent my whole childhood trying to describe some of these weirdest of sensations to my mum as best I could, only to hit a constant blank wall, and I still try to share with my ever-baffled husband, but it can be a lonely business when no one ever seems to relate.

Interoception can feel “off” because connective tissue differences can make things feel differently.  Not so much a case of interception being poor, as is often assumed to be the case with autism, it’s often as though interception is even more amped up than usual, making you feel every slightest thing going on in the body, only that doesn’t make it any more simple to make sense of, or explain what you are going through, to others because what you experience is so anomalous compared to what is considered “normal”. It can feel like hitting your head on a brick wall to even try!

Gut issues

There’s a paper (one of many) out there on a range of gut issues associated with hEDS which summarises: “The type, frequency and severity of digestive symptoms can vary greatly from person to person as everyone with hEDS is different. The most frequently reported problems affecting the upper digestive tract are acid reflux and chronic/recurrent indigestion with pain or discomfort and early fullness after meals. The lower digestive tract can present problems such as constipation, abdominal pain, bloating, diarrhoea and a feeling of general abdominal discomfort.  Nausea and vomiting can occur alongside any of the symptoms described above”. More than one study has found that renal hypersensitivity is a common pathophysiological factor in females with functional constipation and hEDS/HSD.

Its also been found that there is an increased risk of celiac disease (also, the opposite is true, that those with celiac disease have a 49% increased risk of EDS than those without celiac disease). In a nutshell, there is clearly a link, one way or the other. My own sudden inability to digest wheat coincided with my ever-worsening, thus more apparent, hypermobility issues around periomenopause and those few times that I have been “glutened”, when eating out, have generally triggered increased laxity and pain as a consequence (which is, typically, how I first realise that I have been cross-contaminated in the first place).

Why so many gut issues? Well its not so very hard to speculate when you consider the effect lax tissue structures could have upon all the mechanical processes that have to take place in order to deliver food from mouth to rectum and all the stages in between. Issues may stem from inefficient chewing due to TMJ and teeth issues (which I have had in spade loads), the complicated business of swallowing (issues with which I developed around the same time as perimenopause), any compromise to the various valves involved in conveying food in the right direction, the complex processes involved in mushing food in the stomach to make it digestible, the possibly compromised triggering of appropriate substances at the right time to aid with this process, issues with absorption if the gut lining is also compromised or if the conveyor belt is moving too slow or too fast. Issues with diarrhoea and constipation are no surprise when the ability to create a normal stool is likely to be so elusive and of course gastrioparesis (when the stomach stops digesting food) needs not to be missed.

Smaller meals at regular intervals probably need to become a fact of life if you are hypermobile. You also need gravity on your side when it comes to digestions so eat early and don’t lie down after meals. Time of day is all-important when it comes to eating, especially as laxity seems to worsen with tiredness, and especially if you don’t want the kind of pain that keeps you awake all night or drags on as bowel issues the next day. 

Oh, and another gut issue can be feeling fuller quicker or struggling with what western society deems to be a “normal” portion size as it just seems too massive for us to digest…but also not feeling full enough. I’ve noticed at time’s I’m especially hybermobile, I sometimes get really hungry sensations even when I really shouldn’t, for instance after my stomach has been stretched earlier by a big meal, so I start feeling like I need another big snack at bedtime or wake in the night rumbling and ravenous, like I haven’t eaten for days. I am convinced this is the after-effect of stretching that doesn’t then normalise but, rather, sends signalling haywire afterwards, either because the stomach sends “empty” signals because its become enlarged and baggy inside and/or due to the inappropriate production of digestive acids in the middle of the night signalled by the over-roominess of the gut (left over from being stretched the day before). This, of course, can lead to over-eating because you’re so convinced that you are starving. Your body craves that satisfied full-feeling than its over-stretched format is ever able to achieve, so it becomes a vicious cycle of over-consumption. Because of your stretchy gut, you seem capable of eating or even drinking huge amounts (I think back to my beer drinking days in my 20s when I could sink a shedload) once you get onto this wrong track. Again, smaller more regular meals seems to keep this under better control as it prevents over-stretching of the stomach in the first place.

Mast cell issues

Higher rates of inflammation and subclinical inflammation leading into mast cell activation issues is also a likely outcome when the gut is compromised. When mast cells overreact you’re going to become inflamed. An extreme over-reaction to mosquito bites, by the way, can be a sign (as began happening to me, big time, around the age of 40)!

You may have all sorts of food intolerances, you’ve tried everything and none of the strategies or diets seem to work; these can be clues of mast cell issues.

As above, inflammation of the rectum can occur. There’s also an increased risk of inflammatory bowel disease such as ulcerative colitis and Crohn’s disease, both of which have been associated with mast cells issues, with an increased prevalence amongst people with hEDS (see study).

You also have to become aware of histamines in food (by the way, spinach…as well as being exceedingly high in oxalates, which can be a problem in themselves for people with hEDS…is full of histamines). Favouring low histamine foods and knowing how levels peek at certain times of day, such as bedtime, becomes a way of life. Your track record with certain foods can speak to the truth of these kind of issues and you will probably learn, the hard way, what works and what to avoid because of all the other flare-ups that get triggered when you get it wrong. Many probiotics are histamine producing so you need to do your research, finding the one that works for you. Diamine oxidase supplements can be used to mop up histamines and make a real difference. Its a complicated business but an important one to tackle for improved symptom management and not just affecting your gut!

In this account, a woman with hEDS describes how having mast cell treatment eliminated her hEDS symptoms and there’s a a lot of such anecdotes about saying something similar. General chest pains, heart palpitations, and rapid heart rate, or tachycardia, are also common symptoms of mast cell disorder so here’s some more on these.

Dysautonomia including (but not only) POTs

Where mast cells are misbehaving, disautonomia is very often not far behind. General chest pains, heart palpitations and rapid heart rate (tachycardia) are common heart-related symptoms of mast cell disorder. In my own experience, a generalised uncomfortable feeling in the chest and issues with arrhythmia when I lie on my sides seems to return out of nowhere when I am most hypermobile, typically during the winter months though I am generally fine in the warmer months (more on the seasonal aspect later). At the same time, I often notice issues with chest ligaments (the intense rib pain that is Costochondritis, more on that below) and weird sensations around the neck and chest areas (neuropathy, allodynia, pinched nerves etc). Its easy to speculate how increased laxity around the control centre that is the heart and the rib cavity that it is housed in might cause a cacophony of integrated issues that can be so particularly alarming because they so-easily mimic heart attack (of course, you need to get this checked out, as I did last time I had a major episode). If not a heart issue, if that gets ruled out, could it really all be to do with hypermobility?

Another factor; your temperature dysregulation or minute sensitivity to changes in temperature might be so all over the place that people try to tell you it’s menopause or maybe you even tell yourself but really it’s so much more than that, especially if it started long before and continues long after.

The all-important autonomic neurological system is in control of digestion, heart rate, thermostat and pretty much everything that keeps the body ticking-over smoothly. When this goes wrong or stages in the process start to malfunction or become ill-timed due to overstretchy connective tissue, the whole system can quickly go into disarray. In other words, there is a whole lot more to dysautonomia than “just” classic POTs (dizziness or low blood pressure when standing up) so a tilt-test might not be enough to diagnose what you have going on and the symptoms can be extremely wide ranging, as I’ve written about before. They can all lead back to an underlying chronic hypermobility issue if they remain unresolved after a lot of efforts to follow the usual protocols have not improved things.

Another factor of this disautonomic type of response may be, say, a sudden blood pooling to the feet and pelvic floor or a shot of headache right after doing exercise such as walking. A personal hypothesis I have is that muscles in the body tend to be so chronically braced and self-protective, in the absence of adequate soft tissue support, especially when you are upright and moving about, that they become exhausted by the end of that effort, suddenly releasing their hold just as soon as your body registers that you’ve stopped moving, causing a sort of sudden vasodilation event. This tendency for the body to be braced in self-protective mode most of the time can be a main source of chronic rigidity and pain, not to mention exhaustion, in the body.

By the way, because of this link between hypermobility and autonomic disregulation, chronic stress can greatly exacerbate the symptoms, meaning people with it often benefit greatly from daily practices that support parasympathetic nervous system function. You might want to explore mediation, apps such as Curable or Calm, programs such as the Gupta Program, amino acid support or anything else that helps you to unwind your nervous system on a regular basis. Also, life choices will be massively impactful upon symptoms, as I have been exploring from the front line of making some highly stressful life changes this year!

Costochondritis, Fibromyalgia and such

Both hEDS and costochondritis are, not surprisingly, closely related to each other as both stem from weak and painful joints and can cause intense pain and fatigue. In fact, studies have found that Costochondritis along with erythromelalgia, fibromyalgia, psoriasis, and Raynaud’s disease are more common in people with hEDS than in the general population. Unsurprisingly, there is common territory with ME/CFS too. Focusing on one of these conditions can cause you to miss the less obvious fact that you are also hypermobile but realising this can lead to a crucial difference in approach, as happened to me when the light bulb came on and I began to factor my underlying hypermobility into the picture.

Prolapse, vision issues and other randomly misplaced body parts

Organ prolapse or the feeling of organs being positioned slightly wrongly are common factors of hypermobility, especially as you age beyond menopause, as oestrogen levels tank, affecting the collagen that helps keep everything in the right place. Also, with hEDS, parts of you may start to leak, even before going through childbirth!

Vision issues can occur, sometimes severe, that are highly variable and dramatically worse from middle age. You may feel as though you need a new prescription and then, after a couple of weeks, the problem resolves, only to return the next time you have a flare-up. By the way, detached retina can be a higher risk with hEDS (a sibling of mine has had a repeat issue with this) as ineffective collagen causes the eye to expand or lengthen, which can then cause the retina to become detached. For a similar reason to do with compromised collagen, glaucoma, keratoconus, macular degeneration and conjunctival redundancy are also more common with hypermobility so you, excuse the pun, really do need to keep an eye on them as they can be progressive.

Wearing braces and supports around lax parts of your body can be a game-changer, as I intend to write about soon as the recent use of a neoprene torso support has freed up other body parts so they seem to work better, even reducing the risk of low blood pressure or POTs when I am out and about, also reducing fatigue after my walks too, as I discovered recently.

You may think you don’t need these supports if you don’t have the kind of joints that pop out of their sockets but, believe me, its worth a try as the deeper, more invisible kinds of hypermobility can really benefit from some external backup and the effect can be profound. There seems to be a psychological component too; wearing a good support can signal to the muscles that they don’t have to be so braced and rigid, meaning they can do their naturally allocated job better, and meanwhile you can start to feel a lot less anxious, more protected and in control when out doing things. In other words, when you brace your lax parts externally your body doesn’t feel so much like it has to brace itself!

The use of salt in your diet can also be a big help with staying upright and is worth the experiment (most hypermobility sources will tell you that increased salt is essential for managing POTs).

Another related issue can be build up of toxins (you’ll know when this happens) and interstitial pressure due to compression of lax tissues. So if you start to notice sore or swollen glands, an increase in body odour or a skin break out it can be a sign that your lymphatic system is jammed up so its time to get some hands-on movement back, either self-applied (I swear by massage mits in the bath or frisking with a rough towel) or get yourself a professional massage by someone who understands hypermobility…or do some (appropriate) vigorous movement such as dancing around the room or shaking it out. It might also be time to learn how to self-massage lymph nodes to help drain them, instructions online. Lipedema may be an issue (see this compelling article on the links with EDS, fibromyalgia and ME/CFS; early stages can just look like standard weight gain…) and intracranial hypertension may be related so this is no laughing matter. The same article I just linked asks, for instance “Is it possible that some of the pain currently associated with central sensitization or small fiber neuropathy is due to the build-up of lymphatic fluid or the fibrosis of adipose tissue?”

Again, I’ve found that the period wearing of a comfortable (not constricting) torso support can aid not only better digestion but the healthy movement of body fluids to allow normal detox and fluid drainage to occur.

Highly variable symptoms

I’ve been talking a lot about this phenomenon of having highly variable symptoms that seem to randomly move about the body and even pointing the finger at the possibility of Tension Myositits Syndrome (TMS) as a possible cause (theory being that the sheer randomness of symptoms may indicate that there is an emotional, rather than mechanical, root to whatever is going on). However, as you can tell from the above, hypermobility can also cause a whole load of quite random seeming symptoms that are as variable as they are prone to moving freely around different parts of the body whenever they apparently please. So, do these two theories contradict each other?

Well hypermobility is clearly a very real, demonstrable, even mechanical health issue but I am not ruling out that emotions play a part, as in, increased stress and other emotional factors could potentially serve to load more symptoms where milder ones may have been otherwise sustainable (the close involvement of the autonomic system does mean that heightened emotions and feelings of being “unsafe” are only going to add to the already considerable experience of vulnerability that is already hypermobility).

When your body doesn’t feel safe, it becomes more rigid, as I have already mentioned, or it can alternate between rigidity and suddenly laxity in response to highly variable outside circumstances, apparently swinging from one extreme to the other. However, I don’t think its as straightforward as saying hypermobility could be managed or even 100% controlled if your emotions were all in a better place; its all far too complex for that and I won’t do the experience of hypermobility the disservice of making it sound so cut and dry!

If hypermobility is a genetic trait then I guess stress and emotional loading are the epigenetic circumstances that can amp hypermobile traits up or down, depending on the amount of exposure to triggers.

There is evidence, of course, that cold weather increases most pain syndromes, probably a main factor being the increased tendency for muscle rigidity that results in all of us when it is cold, quite aside from the propensity for extra rigidity that someone with the compensatory muscles of a hypermobile body is likely to experience. I also suspect that lower vitamin D in winter due to poorer quality daylight is a player in this as it is a known related factor to hypermobility (its been shown that generally low levels of vitamin D are much more likely with hEDS, so imagine the impact that reduced light exposure could then have). I am certainly experiencing some of the worst hypermobile symptoms that I can remember having so early in the winter season, whilst living in a place that is far more deficient in natural daylight than where I was living previously, even though I supplement daily with a high dose vitamin D supplement, so I can’t help wondering if this is a big factor.

A pet theory I also have is, are our bodies biologically inclined to become more lax at a time of year when we are programmed to curl up and hibernate and, if so, how much more impact would this have on someone who is already lax? How do you even begin to unravel the sheer complexity that is the human autonomic response to subtle changes in environment, something which seems to hit the more hypervigilent (because hypervulnerable) systems of people that are hypermobile particularly hard.

Personality type

There seems to be a particular personality type associated with hypermobility, as gathered from some of the sources I have been exploring, and apparently we are often the impatient type-As that pushes ourselves hard, always feeling like we should be doing something or not knowing how to switch off or stop. However we also, desperately, need to learn how to do this better for the sake of our bodies. We also tend to be the types who aren’t so great at knowing when what we are doing is too much as the pain tends to come after the event, not during. Bust and boom is not an appropriate lifestyle for someone with hypermobility so you need to be taking those small regular breaks before the burnout!

The same goes with exercise; we still need it to keep our bodies moving and avoid the worst kind of pain that comes from stagnation and further deconditioning, but it has to be the right type of exercise in the most appropriate amounts, and we need not to push into those furthest extensions and stretches that we probably love so much as they are the very thing to exacerbate our overly lax joint issues and other easy-to-injure soft tissue areas.

In short, we have to learn to rein ourselves in as our natural “type” modality is to be about as un-reined as we can possibly be, in every sense of the phrase, including having body parts that stray all over the place when they shouldn’t.

The fatigue that comes with hypermobility is like no other fatigue; so intense it feels like its too much to change position on the sofa or answer your emails and you can’t just push your way through it. It’s also the kind of fatigue and pain that interferes with regular movement practices so, on this front, you do need to find something you can turn to, without overdoing it, to keep you mobile in manageable and hypermobility-applicable ways, as being too sedentary feeds the condition. It may not be the “sexy” exercise practice you would like to imagine but adopting the right one can make all the difference. I will add some resources at the bottom that may help you to curate your own small daily practice with the added bonus of less pain and better, more sustainable, mobility.

Another point is that weight gain is not the friend of hypermobility, especially with advancing age, also toxins can easily build up when the normal function of glands and systems for fluid movement are compromised by laxity, so its important to factor in movement to keep things clearing and to keep that surplus weight off.

Another major factor is that we hypermobile folk often experience muscles that feel heinously tight and painful because our nervous system is so busy trying to protect our much-too-mobile joints and connective tissues (as I have said already) and the effect can be this constant rigidity in your body that looks and feels anything but hypermobile. By learning to move our bodies differently, finding those lost core muscles, waking and activating those deep sensors that signal to our body that we are safe, we can start to disarm the walking alarm systems that we have become. It’s long work in progress but all starts with that first crucial moment of realisation “this hypermobility thing is really me” and those first few steps of taking the most appropriate action for our particular type of body.

One last thing, if any of this sounds at all like you, you don’t want to be doing it all alone and there are good resources out there that enable you to access the relatable experiences and advice of other people who are going through similar situations. Some of my favourites are podcasts, which I will list below, also Instagram and TikTok accounts (whatever your preferred poison) which have a lot of accounts focused on this topic, some more helpful than others but it can be a lifeline of information coming from real people rather than text books that tell you what you are experiencing is too rare or not real, making you feel like an imposter in ten seconds flat. Instead, there are ever growing veins of really useful and freely pooled information forming out there n the internet that you can mine into once you start to follow the trail of real-life accounts and some of the less mainstream diagnostic sources because, at the end of the day, this is (your) real life experience and it really matters!

Exercise approaches, podcasts, social media etc

Chimera Health – hypermobile fitness online tuition

The Gokhale Method healthier posture tuition

Hypermobility Happy Hour podcast

Help! I’m hypermobile podcast

Hypermobility Doctor Instagram account

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. Opinions are my own based on personal experience. OF COURSE please seek medical advice from a professional if you are experiencing any symptoms that concern you.

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