Talking about my health to a public domain of strangers feels quite intimidating. I wanted to write this blog to support the NAF podcast I recently did with physiotherapists Adam Meakins and Gregory Leghman. I am aware that this is my own experience only and not everyone who is hypermobile will resonate, since the term ‘hypermobility’ is a complex spectrum with an umbrella of associated conditions. Thank you for your time.
I should begin by introducing myself; my name is Kara (Karen-Jane if it’s a Sunday; my close friends call me Kaz). I live in the North East of England. I am British, so I feel like I should tell you that the weather today is dry; 18c and slightly overcast. My favourite Canadian is Greg Lehman (with Pamela Anderson running a close 2nd) and I am an equipment qualified Pilates Teacher with a Masters level cert in Education. I’ve extensively studied hypermobility, including a course for exercise professionals by Jane Simmonds (& my lovely friend Mark Parfitt-Jones). I’ve worked on my own rehabilitation with several physiotherapists. I’m fully proficient in sarcasm, I pole fitness in my free time, oh… and my clients call me Betty Spaghetti behind my back- yup, I had to google it too. I’m not sure I consider myself a specialist in hypermobility, but I live with and manage my own hypermobility, which gives me an anecdotal understanding of the condition that resonates with my clients. I certainly feel confident training hypermobile people, wherever they sit on the spectrum, to help better control their condition- and I’ve never had anyone spontaneously dislocate on me in class…. Except my own kneecap- but that’s why I no longer kneel on hard flooring without kneepads. I refer clients (displaying potential extraarticular manifestations / co-morbidities) when I need to, and follow the ‘real experts’ at the HMSA and Ehlers-danlos.com. I signpost clients who might need more advice to these websites, and also EDS UK. I try to create a supportive and positive environment of “movement optimists”- yeah… I stole that.
This is my life….
I want to start by saying that I believe in hypermobilityand all its spectrums. I have soft, velvety, quite translucent skin- which makes me look youthful; equally I have stretch marks and broken veins. I find local anaesthetic a little ineffective and the splits pretty easy, but It was only when I became aware of the condition Hypermobile Elhers-Danlos (hEDS), that the dots joined for me- and I understood why.
I come from parents who encouraged physical activity. I found a love in gymnastics, to a half decent level- vault was my thing and I won stuff for it. Then, one day in 1993 I woke up and I wasn’t the best at sport. In fact, I wasn’t well. Something had changed and hormones were at play. Although, looking back, not the start of my hEDS symptoms (I suffered from nosebleeds all my life, and I was regularly seen hopping around school, because I’d gone over on my ankle), but it was a catalyst of what was to come. I should mention that gymnastics is where I met my lifelong best friend; although our lives took very different paths for a while. As Alexa took the dancing world by storm, working as a contortionist for Andrew Lloyd Webber, I went on to visit most departments of my local hospital. Where Alexa’s hypermobility had shaped a prestigious career, mine was simply causing havoc in daily living.
Let’s go back to 1993 where it all went a bit ‘Pete Tong’ (wrong). I was bouncing around the NHS system. My knees hurt. I had migraines. I got wild, and acute bouts of stomach pain that impacted greatly on my life, conjuring a large range of emotions. I fatigued easily. One GP told me that I was attention seeking, others were sympathetic but could find no cause for my concern. My knee pain became so great that I gave up gymnastics – which was innate to who I was. I became anxious and kinesiophobic. The knee pain continued for 24 months, at which point I was referred privately to a surgeon. There were no MRIs in 1995 and I was 14- my knees began to lock, or feel as if the joint had moved- a sharp, excruciating pain that would see me unable to weight bear. My pathology was all pretty normal, but my knees were swollen and hot, so it was decided that they would operate. They found inside impinged tissue. Impinged tissue that was black and dying- my routine 30 min surgery turned into 4 hours of complication- I’ll keep it brief; I didn’t walk for 6 months.
My fitness levels were low and muscles were deconditioned (aged 14)- and then I had a growth spurt. I’m tall, thin and long-limbed. My periods were painful, my knees still hurt, as did my hips and my heels hurt so badly that I couldn’t wear school shoes, rebelling instead, in Reebok Classics (they diagnosed ‘policeman’s foot’!? whatever that means?!?) I struggled to fit into the school routine: dyslexia didn’t help, holding a pee for hours on end was near impossible, freezing cold classrooms- Raynaud’s set in- hello chilblains…Oh, and my first experience of local anaesthetic. – it’s now known that LA isn’t as effective on hEDS- but in 1995, when I was having my thumb sewn back on, I was told I must be imagining it…As I chomped down on my jumper, to divert the pain. Lovely.
As the years went by, I bounced around the NHS some more- adult onset asthma and hives. Antihistamines were barely working, so after a few days (don’t judge me!) I took myself to the emergency doctor- I was given more drugs and referred to an allergy specialist; He found no underlying cause, although by his own admission the clinical signs were there, all over my itchy, scabby body and wheezy lungs. A couple of years later, I had glandular fever and then my thyroid went haywire. I was sent to the Endocrine dept- bouncing around the NHS like nobody’s business. Fatigue and brain fog were exacerbated further when I contracted meningitis. Exercise was a struggle because I fatigued so easily and graded exposure to daily life didn’t work well. I felt like an exhausted pigeon. I began bruising significantly and for no reason. I was sent to Haemotology for specialist tests for my spontaneous, and quite alarming bruises- but the only diagnosis the consultant could offer was a suggestion of hEDS and I was referred back to my GP. Then came the dislocations- it started with a kneecap- a light tap to a cupboard in the bedroom – I relocated it myself. Admittedly that hurt more than the initial dislocation. They operated after unsuccessful rehab (it dislocated a second time)- the whole situation was like Groundhog Day. I spiralled into further fatigue- a diagnosis of chronic fatigue syndrome (CFS) was given. The life I wanted to live wasn’t the one I was living; I looked in the mirror one day at physio and I barely recognised myself- something needed to change. That was the day I spontaneously decided to retrain as a Pilates Teacher- if I could understand movement better, and be paid for what I need to do every day, then that sounded like a great plan.
Roll on a few years (I’d had a diagnosis of C1/C2 instability, Slipping Rib Syndrome, and the grand finale- First Rib Dislocation * that First Rib Dislocation was horrendous by the way- the tissue around my collar bone was black and swollen- in fact all of these conditions weren’t ideal) and I was teaching movement classes- a quick demo in four point kneeling on a hard floor and there was a sharp pain and a noise- that same pesky kneecap wasn’t where it was meant to be- it had subluxated- I grabbed a theraband and tied it up, trying not to alarm clients. Once again: significant swelling and bruising and a feeling of despair. I was meant to be a Pilates Teacher, but all I could access was pre-pilates and gentle movement, and although it suited my clientele at the time, it wasn’t what I had envisaged for my ‘new life’. Enough was enough.
I had studied Pedagogy and understand the concept of becoming a profound learner – someone who has the skillset to manage their own learning – so I embarked on learning more about hypermobility. I went on some courses and I read everything I could on the subject. I wanted to feel confident to know what I was doing was right, rather than being reliant to be spoon fed info from healthcare professionals… and I requested a referral to Rheumatology.
While waiting for the referral, fatigue hit again and somewhere along the way, reflux had become a problem. My GP ran some bloods- my pathology had changed- I was showing signs of another autoimmune/ connective tissue disorder. This is where it all gets a little complicated with me. hEDS is only usually given as a label in the absence of other connective tissue disorders but I had a strange set of pathology results; Rheumatology diagnosed hEDS, but wanted a 2nd opinion, with everything else going on, so off I sloped Genetics, who confirmed the diagnosis (which included the acknowledgment of a family history of the condition). I was closely monitored by Rheumatology- I was no longer living- teaching a mere 5 hours a week and dependent on my parents; I could barely function- sleeping much of the day. It was suggested I had fibromyalgia- I read up on the condition and it didn’t resonate. I believe fibromyalgia exists- but the symptoms didn’t fit for me. I challenged the consultant on diagnosis. I was sent to physio, given a few side-lying ‘Oysters’, and agreed to hydrotherapy once a week– unsurprisingly, it didn’t improve a thing. Several months down the line and to cut a long story short, I was given a Medrol depo and it made a huge difference. I’m now medicated with Hydroxychloroquine (as I do show signs of another condition). I take reflux medication to protect my lungs- years of chronic inflammation and reflux has unfortunately resulted in Bronchiectasis. I respond very well to steroids, and when my symptoms become intolerable, Medrol depos work a treat. I know I’m not necessarily a straightforward case of hEDS, but it’s the diagnosis I have. Things were going in the right direction- I had a team of health care professionals that were listening and I started to feel in control again.
I met with a physio through work called Cameron Angus and his ethos really resonated with me; he told me- exercise is appropriate or inappropriate for the person (at the time), not right or wrong. There are no blanket rules. We worked on gentle movements, soothing the nervous system, moving tissues gently….and getting strong; being the strongest version of myself. Mentally and physically. We didn’t work my glutes to help my back pain, or any weird theory that might somehow explain pain. We just worked on moving and getting strong- in all directions, in all joints, with a focus on body awareness – which is what Pilates is. I worked in closed chain and against enough resistance that I could tolerate. I began with some yellow bands, a mat, a very low level… and I set myself some goals. ‘m not sure the meme ‘No one cares, work harder’ is entirely true, but sometimes I’d refer back to it. It reminded me that the only person who was going to be able to change my fitness levels, ultimately, was me. It has paid off; when I have exacerbations of ill health, which I do still, I have some power behind me to manage it better, whatever is thrown my way.
I am now living a mostly, ‘fairly normal’ life. I have a team of medical professionals that listen, and who collaborate in a multidisciplinary team when needed. My comorbidities are managed. I still sometimes show off with the odd party trick, and often live to regret it the next day, but I’m human- I still experience pain. I can now manage my discomfort relatively well- sometimes this comes by way of some gentle movement on my Pilates apparatus, or a slut drop alongside friends at pole. Admittedly, sometimes management comes in the form of a sharp stab of steroid to the buttock. If you enjoy yoga- great, that’s your thing- that’s what makes you happy. Yoga seemed to exacerbate my pain symptoms, but that’s possibly because my experience of yoga is “the more you push, or flop into end range, the better”- with a lack of focus on proprioception or control. Perhaps an hour of lengthening tissues passively in hypermobility, is a rather perilous thing to suggest- rather than finding strength and opposition, or maybe not? Certainly, from the information I have learned, getting strong is key, with graded exposure to load. As with all methods of exercise, regardless of their name, it’s more about the appropriateness for the person, and the cueing of the teacher, than the name of the method itself. It would be unfair of me to suggest all yoga is just passive stretching- you only have to look at the likes of Emma Newham Fitness, to see that you need to be bloody strong to do some of those yoga poses! I guess, when we are choosing a hobby, we have to consider a holistic approach that suits our lives and makes us happy; in the words of the great singer, dancer, songwriter and philosopher Taylor Swift; ‘‘You are what you love’. Taylor 2020.
If I were to define the word hypermobility….
In a nutshell- Hypermobility is common; it’s where the ROM in a joint is greater than ‘the average’. This can occur in one joint, or many joints. It can be benign and advantageous- particularly in sport, or music, or it can be a total pain in the… well… everywhere. Hypermobility was reclassified in 2017, and may well continue to be altered as time goes by- it is considered a spectrum and there is not a blood test that can currently detect it. At one end of the spectrum, hypermobility causes no symptoms- simply a trait of the person’s physical appearance. At the other end of the spectrum there is the connective tissue disorder hEDS .The symptomatic hypermobile people sitting in-between these two goal posts may be diagnosed with Hypermoblity Spectrum disorder (HSD), or joint hypermobility (JHS). Chronic, widespread pain is a common feature of symptomatic hypermobility, although, as Professor Grahame explains, hypermobility can also present as ‘extraarticular manifestations’ (because hEDS is a connective tissue disorder, therefore, affecting more than just joint mobility- it can affect any organ in the body). People diagnosed with JHS/ HSD do not meet the 2017 criteria for hEDS (you can also view the changes here). In these cases, hypermobility may still present symptoms the same as hEDS, but no connective tissue disorder has been diagnosed at that point in time. This does not mean that the problems are milder than a person with hEDS. As hypermobility.org state; “It is important to recognise that HSD is not inherently milder than hEDS, in fact recent studies have shown no difference in symptom severity. It is even possible, for joint range to no longer present as hypermobile, yet other, ‘complaints’ may persist. Management is based on addressing the current symptoms”. These symptoms may be widespread, chronic pain- or may encompass some of the extraarticular manifestations that I will discuss further in my blog.
The criteria for hEDS are up for review, according to the ehlers-danlos.com website and it will be interesting to see what, if any, changes are made. I think things will become clearer when more research produced is published. Let’s take another, less ‘new’ connective tissue disorder (which, unlike hEDS, can often be life threatening), Lupus. Lots of people are diagnosed with lupus, but rarely are 2 peoples experience, clinical symptoms or pathology the same; there are different types of Lupus (just affecting the skin, or systematic- affecting anywhere in the body) and various co-morbidities- it’s a spectrum. I expect hEDS will be similar, but who knows. It is important to note that the severity of symptoms can vary hugely both between individuals and change over time and although hypermobile joints are common (most people will have mild symptoms, according to the HMSA website), the more complex cases are rare.
As a result, my experience will not be the same journey or experience of another person with the same condition. I have added some really useful links at the end of this blog where you can find out more about the classifications, and well, lots of information on hypermobility.
My fingernail dislocated!
Hypermobility can cause both chronic and acute pain, which may be widespread or localised in a specific joint. There is also a higher incidence of dislocations in those with hypermobility. Dislocations cause tissue trauma and need rehabilitation. In general, hypermobile people (I can’t comment on possible extreme cases, but these are not the people I see on a daily basis) are not crawling around, like a skeleton from Pirates of the Caribbean, constantly dislocating as they move. Dislocations are more prevalent in hypermobile joints though, and knowing how to manage this situation if and when it occurs is helpful.
Equally, people who have hypermobility will have experienced weird clunks and clicks when they move. ‘Clicky joints’ are common, and can present a sensation of the actual joint moving- like it’s been somehow ‘out of place’ for a bit, and now it’s back, enjoying it’s best life, where it’s meant to be- or vice versa. Sometimes it’s uncomfortable, sometimes not. I get this- especially around my pesky right sacroiliac joint area- I do a lovely spinal rotation…there’s a massive clunk… and that feeling of pure bliss! I also get many, many, many clients who have been diagnosed hypermobile- who really believe that their joints are dislocating, because of the sensation they have experienced. Trying to change a person’s narrative on their experience is a difficult task- but often, once you explain why these sensations might be occurring, it can help the hypermobile person to move with more confidence. Of course, others flatly refuse to believe that they might have been deceived by their own experience. There are many reasons why this might be the case: gut instinct? Confidence? The fear of admitting you’re wrong? Enjoying the excitement of living on the edge of a possible dislocation? I don’t know. I’m not saying dislocations don’t occur- but my experience is that a lot of people I see with hypermobile pain, aren’t dislocating or subluxating- they just think they are, because they were told they are hypermobile, it potentially explains their pain, or discomfort. There, I said it. My orthopaedic surgeon, who has an interest in hypermobility, believes impinged, lax tissues surrounding tendons and joints may also play a part- I shall leave that one for debate.
In more severe cases of hypermobile instability, joints and tendons can and do dislocate and subluxate, this is well documented by leading experts in hypermobility. This is also, in my humble -experience- certainly true- and I must add, dislocations are painful and cause tissue trauma that takes time to repair. Getting strong and finding opposition in my movement was key to my management plan in controlling this.
You cant go wrong, getting strong! (I stole that too)
Can you really not go wrong, getting strong? Research into hypermobility does suggest that being strong is hugely beneficial in hypermobility. However, it has been suggested by Professor Grahame that the source of developing amplified and chronic pain, in many hypermobile cases, stems from unaccustomed exercise. So how do these hypermobile bodies get strong, without exacerbating their pain, and getting it wrong? The EDS support website offer advice to physiotherapists as a resource on what they consider the best approach. Remember, some of these characters you meet will, like me, have been bouncing around their healthcare system for years and may have preconceived ideas on their condition, or be stuck in ‘The sick role’.
To paraphrase Professor Grahame in his presentation from 2013, ‘those who have deteriorated to a state where they are wheelchair bound, have not received the correct treatment or care’. Of course, people who are wheelchair bound as a result of their hEDS are extreme cases; but managing pain and maintaining conditioned tissue is paramount in managing the condition.
I’m no pain scientist, so I don’t feel confident talking in too much depth about pain (I just like to read what the Greg Lehman’s of this world preach). What I have learned, is that my own pain does seem to be influenced by chronic inflammation, but many hypermobile people appear to have, what Prof. Rodney Graham describes it as ‘widespread amplified pain’. The BioPsychoSocial (BPS) model is undoubtedly the way forward- addressing the nervous system with some mindful, gentle movement- call it yoga or pre-pilates, or animalistic flow…. Whatever. Or equally, going for a walk at the beach with an ice-cream, taking time to self-care and engage with other human-beings (although I must admit, I prefer to do this with dogs) and, what the hell, even re-learning to breathe or meditate…find your tribe and embrace the happy hormones! However- let’s not rule out the biomechanical bit in the BPS model. Of course, I’m not suggesting that the psycho/social elements are not important in pain management of these people- they clearly are, given what we know about amplified pain- but if your joints do need a little more muscle tone around them, so that they don’t dislocate (which is going to probably hurt!), then getting strong provides some self-efficacy, surely?!
The small amount of research that has been done on hypermobility suggests that learning to stabilise joints, via both strengthening and proprioceptive feedback, is important (knowing where your body is in time and space- mindfulness with a focus on movement); With this in mind, taping may be beneficial. I’ve benefited from tape, to increase my proprioception, and it seems that I’m not alone in that vice- just don’t talk a load of rubbish; use it as a tool to provide tactile stimulus, in conjunction to their movement. Mirrors offer good visual feedback and any equipment that completes a closed chain environment really helps, and this is exactly what I did. I scaled it back, I regressed some movements beyond what might be considered a starting point in a ‘normal body’, and I was consistent with my training. Pilates apparatus bends well to this, using springs and straps to support the weight of limbs and bodies, so that the client can focus on proprioception to begin. But as Cameron taught me, appropriate or inappropriate for the body in front of us, not a right or wrong exercise. Expose slowly. Grade the load. I also utilise my full range of movement (ROM) in resistance training- I’ve heard clinicians try to limit my ROM, but honestly, I’m going to go there anyway when i’m not in ‘rehab’, so that outer range really needs to be strong; I still do the splits, but I train for them against load on the reformer now, and my hips seem to appreciate that. I didn’t focus on fascia, since connective tissues are everywhere (what’s that all about? Let’s focus on all the tissues, and not single one random tissue out and hail it supreme leader). I tracked my cycle, since my symptoms appear more symptomatic in the days around my period (cushions under my untrustworthy kneecaps) and I avoided all the crazy, tin foil hat, Facebook groups. Teaching proprioception in someone who’s never exercised, I admit, isn’t going to be easy. This is why mirrors, a closed chain and a professional who is a good communicator can really help. Verbal and hands on cueing is invaluable, in my experience.
Our words matter (in pedagogy this has been known for a long time. It’s surprised me that it has taken so long to become a hot topic in a world outside of Education). The art of verbal cueing is invaluable, but not just in training; Our words matter when we talk in general to our clients about their health- be aware of the parents of the hypermobile child- are they ok? They are usually not. In my experience, parents often take on their child’s diagnosis, catastrophising is where you will often find them. Be mindful of how giving someone a label might impact a person- and on that note, if you’re not qualified to, or you don’t really know much about the criteria of diagnosing the various labels of hypermobility- stop diagnosing!! Or if you do diagnose, educate your client on what it all means- so that they don’t go away and diagnose themselves with a connective tissue disorder, when their only symptom is sore, bendy elbow, or whatever.
Joining the dots…
As with any connective tissue disorders, symptoms can become quite complex and there are ‘Comorbidities’ that you might need to be aware of. The websites I have recommended give more info. Referring on, and working in a multidisciplinary team is important. The HMSA runs educational programmes on hypermobility- which may be of use.
Hormones can affect hypermobility.What a client can do one day- doesn’t equate to what they might be able to do the next- In my experience, power, and proprioception is much affected in 3 days either side of my period. It’s like having 2 different bodies. I track my cycle and this helps me not get frustrated with my training.
Autonomic dysfunction PoTS: dizziness from postural changes and for me, this does come more of a problem at certain times of the month. Alternative options for inverting may need to be considered. There is plenty of info supporting how exercising can help Pots- see link above. It is also important that you refer to their medical team if you think this might be your client!
Swimming is considered a good fitness option for hypermobile bodies – although there comes the extra effort of the temperature changes that comes with stripping off into a swimsuit or a pair of speedos and immersing your body into cold water, for those who have autonomic dysfunction.
I have worked hard to get fitter and stronger- which seems to help people with PoTS symptoms. For me- temperature changes and hormonal changes exacerbate my PoTS type symptoms; but I still invert- granted I am also sometimes found slumped against a pole, seeing only stars and feeling pretty lightheaded. My autonomic dysfunction used to be more life encroaching, but now my symptoms are better managed, I can still do the things I love. Like hanging upside down from my inner thighs and dancing around a pole.
Bladder and pelvic floor complications: Referring to a good pelvic health physio may be beneficial. I find Maeve Wheelan’s website a wonderful place to refer clients (and professionals who may not know much about pelvic floor training) www.pelvicphysiotherapy.com but there are many others out there.
Fragility and elasticity of tissues
Micro-tears, delayed healing, abnormal scarring, and a tendency to bleed / bruise. If your client has a connective tissue disorder, your client may be well rehearsed in going for routine blood tests and waking up the next morning looking like a junkie. Bleeding and bruising can be a problem! Choose your equipment with your client in mind and let them use a cushion under their hip if it feels more comfortable; be aware that their skin and tissue may be more fragile. Be understanding, that if they have a connective tissue disorder, they may well need a bit of extra care in handling, they take longer to improve muscle tone or to heal from an injury. Communicate with your client!
On this note- When people tell me that they can’t do something, because they’re hypermobile, I always ask them ‘why’? I find the concept of writing anything off, just because someone told me so, a strange one. There is no exercise that I think is off-limits to the hypermobile person- you might need to train a bit first for it. I wouldn’t recommend that you do a full body weight pullup without some decent effort on your homework first, and I wouldn’t promote contact or high-risk sports, but I would be a hypocrite to suggest that someone shouldn’t do something just because of a what if, or maybe. I do non-assisted pull ups all the time, for example (It’s part of advanced Pilates on the ‘Cadillac’). It’s just that I trained hard to access advanced movements. Running is another one I hear people telling me that they can’t do. The Couch to 5K is a great app to get non-runners into the habit. Who’s to say you can’t do week 1 for a month before progressing? There are no hard and fast rules about the speed of which exposure is graded. If you need a bit more time, that’s ok.
Mast Cell Activation (MCA)
Allergies, gastro, respiratory, neurological and urinary issues, to include but a few of the symptoms of MCA.
Acid reflux can be associated with hypermobility and MCA. If your client gets reflux- is it really necessary that the client does a Downward Dog, for example? Inverted positions may well exacerbate acid reflux- so find a different solution to the problem and avoid inverts if it’s an issue for them. Like all my symptoms, my reflux also becomes more symptomatic at certain times in my cycle.
Connective tissue is also present in your brain, so it makes sense to me that neuro diversity/ mental health may also be interrelated. There is ongoing research into autism and hEDS, for example, as well as other psychiatric disorders, such as Attention Deficit Hyperactivity Disorder.
Back to me:
I have had to change my lifestyle and compromise on some things to manage my health: a clean diet with regular calories, an effort to avoid extreme temperatures, time during the day available for a nap if it’s needed (I work 2, 4 hour shifts a day), I very rarely drink (thus avoiding accidents/poor life choices, as well as poisoning my unforgiving liver) oh and I don’t run, but that’s because it sent me mad… but that story is for another day.
I personally avoid social media self-help groups (in general- for any ailment!). In my experience, they are echo chambers where misinformation and hysteria breed. However, the links below are fab;
Finally, if you’d like to get in touch- whether it’s to reach out about the blog, to ask a few questions on how I cue, or regress a movement- or if you’re interested in joining in as a client, please drop me an email
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