It can feel like a very long walk down a dimly lit corridor when you are trying to fathom your way out of a long running health condition such as fibromyalgia, as I expect others on the journey could probably relate to. From time to time, if you’re fortunate and diligent enough in pursuit of your curiosity, its as though a light switch is suddenly flipped as you enter a particular “room” of information; now, newly enlightened information which, through personal relevancy, makes perfect sense to you as the once missing part of your conundrum. With this new room all lit up, you now know yourself far better than you once did plus you have some answers for the way that you have been to date. This not only sheds light on your past but boosts morale, directing your enquiries and considerations forwards, towards the next pocket of light.
At other times, these breakthrough’s happen at a whole other scale. It’s as though a whole circuitboard is flipped as a space the size of a gymnasium lights up with so much new information you can hardly take it all in…and all of it relevant, as though it has just been waiting for you to come along. You can feel in your bones how this is a “right” connection because everything in that new space seems to be a perfect fit, lighting up all that has happened to you in the past and helping inform a new sense of wholeness that is suddenly there for you to embody going forwards; yes, even if you have just realised you have a new “problem” to add to your collection, because to know is to make tangible what you have been struggling with anyway, only now it has features you can learn about, rather than being the unknown assailant in the dark.
Anyone following this blog will know that discovering I had Asperger’s was exactly like this. Not only did a vast area of my longest-running conundrum light up for me to see face-to-face but now many of the corridors leading off that giant room began to have signs and open doorways beckoning me, while others receded into shadow as irrelevant. I was better able to see where to head to next in my research as certain new avenues lit up as if to shout “over here”, calling me forwards so compellingly that these last couple of months of reading, research and self-enquiry have been some of the most insightful times of my life to date, no exaggeration at all.
One of these doorways left open for me to consider, directly adjacent to the floodlit space of Asperger’s (since they are so very closely connected) was Ehlers-Danlos syndrome (EDS); to me, a new area of research for all I knew I had hovered around its threshold before. Yet, like the very first time I considered Asperger’s, I didn’t feel quite ready to take this on board when it first presented to me…or, perhaps, it seemed too daunting for me to comprehend what this meant at those earlier stages. I wonder, having not yet realised about my Asperger’s, whether EDS would have sounded all too depressing back then in a way that, as part of this new phase of “spectrum living” that I have embraced, I am able to digest more easily now; though I struggle to explain why except to say that in getting to know, and appreciate, Asperger’s I am now more open to considering any of its closest associates.
There must be some sort of rhyme or reason why EDS and Asperger’s are such close bedfellows so I want to find out what they have in common. Why was EDS so alarming to consider, initially; even though, every time I came across it in yet another Asperger’s story, these accounts sounded such a lot like me? Well, writing my way through a conundrum is my Asperger’s way of making sense of what I already know and all the information I am gathering (or have gathered from my life experiences) so I am going to plunge straight into this topic and work it out as I go. This won’t be a short post (there’s enough here to publish a book) but I offer it with enough tags to suggest you dip in as appropriate.
EDS is a disorder of the connective tissue in the body, to do with a depleted collagen levels and, depending on how much and what you read, can often sound horrific and thus an unlikely diagnosis to anyone who leads the semblance of a normal life (though that is not at all true). It can also be painted as terribly black and white, focusing on hypermobility as the primary “symptom” and seldom mentioning all the other variations (of which there are thirteen classified types). It was only a handful of days ago that I really got to grips with the fact there are so many types of it and not all of them are so very visible to the human eye, affecting body functions that go on deep below the visible surface. This piqued my interest…so, with that, I put aside some time this week to deep dive the topic and, oh my goodness, what did I find in there but it wasn’t me!
So, EDS wasn’t (as I had over abbreviated it) some sort of double-jointedness…end of story, it was far more complex and mysterious than that and many of the signs that a person has it are pretty covert, perhaps not being diagnosed for many years if ever though they may give rise to a cacophony of health symptoms leading to, perhaps, years of seeking other causes for pain and disability, not to mention some deeply troublesome symptoms. Why am I surprised by this? After all, its the same story that I am used to, having lived side-by-side with other covert conditions, including fibromyalgia and, of course, Asperger’s, neither of which are “visible” traits to anyone who takes me at face value yet I have them with knobs on and both have led me on a “merry” dance through life. Fibromyalgia is famously termed the “invisible” health condition (though not so to those living with it or their families). Likewise, in many cases, especially those involving women who have reached full maturity before realising this is their trait (or who have worked hard to disguise these traits all their lives), Asperger’s is something else that can remain hidden from sight for decades, even from those who profess to know these very people with it. Was I about to uncover yet another thing about myself that I would have trouble convincing anybody of, though I can already see how true it is to myself; and is this why I feel so weary at the thought of taking EDS on? Is it because I dread people acting as though this is all part of some sort of self-diagnosis obsession; that I have simply added another health “label” to my hypochondria hobbyhorse? The disbelief of others is one of the most pervasive side-effects I have had to deal with for years.
So where’s the evidence that this is me in, say, my childhood before health issues became so intense and chronic. Well, yes, I have always had hypermobility issues; bending fingers back the “wrong way” and licking my nose with my tongue were amongst my party tricks at school. Lying in bed reading or on the floor to do art projects with my back arched the reverse way was my bendy norm as a child; in fact it gave me perverse pleasure to bend myself against the grain, or sleep face down with my head pushed backwards by the pillow, until about fifteen years ago when chronic pain stopped me in my tracks. After that, hypermobility was replaced by almost its opposite as even normal movement range became a problem…but not in the beginning!
Back then, I liked to sit with coiled up legs and feet knotted up beneath me in convoluted ways my parents insisted weren’t good for my blood supply; or with lower legs twice wrapped around each other at the calf like a pair of snakes. Clicky bones? Both then and now, click, grind, crunch…I was likened to a bag of bones when I moved. Having eyelids so thin they were a network of spider veins when I was young (for which I was made fun of) and which have never seemed to block light appropriately, led to a phase in perimenopause where my eyelids would split open and bleed or become infected; thankfully, over now but I have ceased wearing makeup. Patches of hyperpigmentation on thighs and knees and, later in life, over long since healed operation scars or over places where I feel especial pain (even though the skin had not been open) were a source of intense embarrassment as a child. Then there was either missing hair (outer eyebrows and eyelashes are awkwardly sparse) or too much hair in all the wrong places. Having head hair so thin that no style could ever save me from the drowned rat look, no matter how much 1980s hair moose was applied, was just another sting to add to my unusual, gaunt cheeked, facial features and pronounced jawline with pinched-thin lips, which already made me the brunt of people’s jokes when they had nothing better to do. Teenage self-confidence issue affect us all but I sometimes felt I was having to start from a different benchmark to everyone else when it came to learning how to make the most of my features and, though I got there in the end, passing as quite “pretty” or “striking” by my twenties from much effort with makeup and hair style, it was a long and arduous slog against the grain with these skin and follicular challenges. My saving grace was always big blue eyes; big eyes being an EDS trait I read.
The fact my stomach was always doughy and distended, oddly gravity challenged, from as far back as I can remember, regardless of what I did or didn’t eat (taking years and near starvation to achieve the washboard flat I had long coveted in time for my first wedding, only to be lost the moment I had a child), really didn’t help. This made me terribly self conscious at school and called for supportive undergarments a-la Bridget Jones from late teens. I wasn’t ever fat but this feature has always made me feel so; as though the lower part of me has a fleshy, gravity challenged, life all of its own. Then there was the time I was accused of having “shopping bag arms” by my archery teacher because of the black and blue, often bloodied, bruise I formed on the reverse of my elbow (which never healed the whole time I did archery) due to the way my arm bowed too far backwards when taut, chaffing against the draw.
In fact, I have always been good at collecting mystery bruises, with no idea where I got them and not always showing above the surface but there to be acutely felt as though I have sustained significant knocks and bumps throughout my days that I simply can’t recall. Simply being grabbed by the arm or tapped to gain my attention can be enough to make me yelp in pain and to leave a bruise that suggests far more rough and tumble. Back in school days, I put this down to my clumsiness since spacial ineptitude came in like a tidal wave when I was at primary school and never really went away again. Fear of falling became an almost obsessive thing, especially in snow and ice, making me into the over-careful butt of much teasing and prank playing on the long walk down the school driveway. Yes, I was made a bit oddly, as I quickly realised, but then I was so odd on the inside that it didn’t really matter so very much, being part of the whole package of oddness that was clearly me. My self-confidence had been under attack for so long by the time I realised the extent of these foibles (in which unrealised Asperger’s played a big part) that having more reasons added to the list hardly made any difference.
Likewise, I took the disappointment in my stride when my active years drew to an abrupt end at around age 13 after which, all of a sudden, it was as though my legs…and my lungs…didn’t work any more. I didn’t question, and nor did any adult, why (though I had always been an active girl, out on my bike, my scooter, my roller skates, skipping, chasing balls, swinging a racket) I suddenly seemed quite unable to do any of these things as puberty hit. It was as though my knee and elbow ligaments were now made of chewing gum and the pain in my my rib cage (as inter-connective tissues tried to heave in and out fast and far enough to allow what felt like struggling heart and lungs to keep pumping sufficient blood and air for me to get around the athletics track) was like something internal had ruptured or splintered; jagged and intense, the pain could be excruciating. Yet my unsympathetic teachers would look on with mouths twisted in readiness for the sarcastic retort they would so enjoy delivering as I collapsed to the ground, doubled in pain, and absolutely no concern of the kind that may have led them to investigate further. No one spoke to my parents, nor sent me to the school nurse; I was assumed to be just another lazy, inept teenager and that was that.
Nor did anyone at home raise an eyebrow when each day at school exhausted me so thoroughly that I cold hardly speak when I got home; would drop bags at the door and crumple up in a small twisted ball-shape in an armchair, falling into deep sleep for at least a couple of hours (though this chair was right next to the blaring TV my parents would be watching…but I was way too tired to make it upstairs to my bed), before I could even consider doing homework or relaxing. This was how I spent my puberty years; always physically worn out and in some sort of mystery pain, though it seems that “growing pains” and teenage lethargy were enough to explain it all away back then. And, by the time I was into my later teens, some of this had evened out; it was there but not so intensely so perhaps “growing pains” was what it was, I was able to tell myself.
In fact puberty, it turns out, is a classic time for EDS to show up or “come on” if the latent trait is already there (according to Ehlers-Danlos Support UK ). So is it genetic or is it wholly viral (as Anthony Williams the well known Medical Medical medium holds it to be, pointing at Epstein-Barr)? Perhaps …and I tend to think…it is epigenetic, showing up when certain other conditions (hormonal, viral, circumstantial) are met? Perhaps its a one plus one situation and I had both sides of that equation. I’ve speculated before that my mother may well have been carrying Epstein-Barr when she was pregnant with me. I was also the fourth child, and she was in her forties; perhaps these considerations also tipped my odds of taking on the trait, if she had it in her gene pool, because I do see flashes of it in other family members…but I am the one who has chronic pain; and they don’t.
Those who say its a genetic trait state that if the mother has the standard version of EDS, there’s a 50:50 chance for each child to develop it….while other types of EDs, I read, have no genetic predisposition (but, with so much variance in these opinions, it remains work in progress and nobody knows for sure). The genetic theory interests me because, as with Asperger’s, I retrospectively see so many of the symptoms in my mother. From the super-velvety, almost line free, skin beyond her years to her propensity to develop bleeding wounds and cut/split skin injuries under the slightest provocation or for no reason at all. With recent and old scars all up her forearms and legs, she was assumed to be clumsy but I used to watch her busy domestic routines and could never fathom why she had so many cuts and bruises and it remained an enigma to my watchful eye. She was prone to varicose veins on her thighs, which I remember thinking vehemently “I hope I don’t get those” (I started to in my thirties until dietary lifestyle changes seemed to halt them).
Also worth noting is that her small toes pointed the wrong way, crossing over the adjacent toes; blamed on ill-fitting shoes as a child but I have never seem the trait in anyone else. Then there were her issues swallowing and breathing (she was a noisy breather and insisted she could only mouth breathe, putting this down to being a premature baby), with machinating her food, with an occasional froggy-hoarse voice which, at times, sounded as though she was being choked on the phone and her a constant dry-mouth which caused her to suck mints around the clock. The flesh on her arms was so soft it would seem to hang like loose curtains, around her elbows and knees it would often seem saggy, and her post baby stomach was something else, pooling downwards when she removed the girdle that was de rigueur in those days yet this wasn’t a “fatness” like other rounded mums I observed at the school gate; there was a quality to my mother that was different somehow, like she possessed too much flesh or it didn’t know how to behave. There was a complete absence of any body hair to legs, arms or underarms (I recall asking her about this when I became curious about puberty; did she diligently remove it all since I saw no evidence of a razor in our bathroom but “no”, I was firmly told). She had such fine head hair (like me), receding slightly from a high forehead that, had she not permed it and teased it into curls every day, would have looked as though she had hardly any hair at all, which is how she appeared when wet. like a chihuahua in the bath. Then there was the way her gums proved unable to hold any molars beyond her middle years, leaving her with dentures that she loathed wearing for all the years that I knew her. All of these signs and traits are quite consistent with EDS. Irony was, for all she could be formidable, most who knew her used to say she was “far too soft”.
This all paints such a picture but, truth was, this wonderful, big-hearted woman did what any self-respecting woman would do to disguise these aesthetic oddities and they hardly garnered a moment’s notice from anyone else, to whom she was just a “bonny” woman with a remarkably youthful complexion and a trademark curly hair-do that she always made effort to fluff up. However, as the youngest child of four to a middle aged woman whose oddities were only getting more obvious, I noticed it all and recorded it for some sort of rainy day. I confess, there were times I dreaded that “being like her”, which I am in so many ways, would mean that all this was what lay ahead for me in my future years, especially the downward pooling fleshiness. Yet I am not her; and the one stark difference between us is that my mother seldom complained of pain, in fact she prided herself on never having a day’s ailment (until she got liver cancer and died prematurely). She was hardy and strong, always physically engaged with life in ways I can only dream of; but that’s not to say that the core trait of EDS didn’t come from her and, combined with my father’s gene pool, which included the trait of hyper-sensitivity, made…well…me.
Did my signs of such EDS oddities take until much later to rear their head again? In many ways, yes they did since a sudden aversion to sport was hardly enough to flag them up in my youth. I overcompensated with other interests and let go of the one boyfriend who was annoyed by my inability to hill climb without a spectacular ankle turn that left my foot like a lump of meat on on piece of elastic (that ankle is still very weak to this day), or to lug around motorbike gear all day walking the Brecon Hills and still be up for a long walk to the village pub later. In fact, riding pillion was alright…until it wasn’t and I felt like a desperately unsafe rag-doll on the back one unforgettable day when my ability to hold on with stiffened fingers or to find my centre of balance anymore seemed to fail me on the motorway in a heavy rainstorm. Overall, I was glad to let that relationship go as it wasn’t a fit for me due to showing up all my niggling physical limitations, which I preferred to forget about. Yet, by and large, I managed to get through those years without too much hitch since sport or outdoor pursuits were hardly the thing in common that I had with my friends from the pub and I muddled by for another few years.
It was in my mid twenties that an endless cycle of genitourinary mysteries began to occur and the doctors, non-the wiser, set me off on the usual round of antibiotics (which came with other consequences) and thrush pessaries only for me to get nowhere and still be in near constant stabbing and burning pain or soreness “for no reason”. I remember editing someone’s dissertation about vulvodynia and vestibulodynia (editing academic work was what I did at the time) and loud bells were ringing all over the place (these conditions are linked to EDS). My partner thought I protested too much about “pain down there” and that I simply wasn’t interested in the physical side of our relationship. The truth of the matter was that I was but there was such a price to pay, far outlasting the brief enjoyment with days or weeks of inexplicable discomfort, that it often didn’t seem worth the trade off if he and I weren’t in a good place, which we often weren’t, which made him less than gentle or understanding. One bout of pelvic pain led to me being treated for a serious pelvic inflammatory issue at a clinic in the hospital, though I was never convinced of this explanation since intermittent pelvic pain has remained to this day, but at the time it left me with an all-pervading feeling of shame as though I had caught a sexually transmitted infection (informationals in the waiting room at the clinic didn’t help this self-pronouncement). Having been through a mate-rape scenario a few years before, this was tender ground to have to keep walking over and it made me so deeply unhappy about myself, added to other physical complications that seemed to be arrive apace.
My mid-twenties became an unhappy time for random yet deeply bothersome and persistent health issues like these which seemed to come one after another in convoy yet none of them pointing towards explanations my doctors could give me. My body always seemed to over-react to whatever medications they could offer (a known EDS trait). For instance, a steroid injection to my buttock for persistent glute pain caused that whole area of buttock tissue to collapse or cave-in to an oddly distorted shape that took years to get over, making me lopsided and oddly proportioned, just to add to my self-confidence issues, not least because my partner made such a point of how it had ruined my appearance; and meanwhile back pain niggles continued on and on without respite. I now read about the danger of steroid injections for someone with EDS as they break down collagen cells, hastening damage to connective tissues that are already collagen deficient.
Raynaud’s phenomenon (another family trait, one which can often be a byproduct of EDS and which first strongly appeared in me at puberty) became an almost daily thing around this time, regardless of the weather. My fingers, hands or feet were often blue-white and numb, even on a summer’s day in a warm place and always as I walked past chiller cabinets in the supermarket. I also began having regular episodes of numbness and small fibre neuropathy (a common feature of EDS – see this study) which frightened me into reassessing my habits including how much I was having to drink. As it turns out, I was not wrong in my instinct that alcohol wasn’t helping matters. Around that time, which coincided with having just lost a lot of weight very quickly, ready to get married (and because a chance encounter with a long mirror at a friend’s house had alarmed my at how drooping fleshiness around my midriff reminded me of my mother’s odd physique), I began literally tipping over at the first sip or alcohol. My friends found it funny but, combined with a plan to get pregnant straight after the wedding, I decided to give alcohol up for the time being and it helped a great deal, in more ways than one. I had been deeply worried for a time that perhaps I was an alcoholic to be having these extreme reactions, plus the excruciating hangovers, which seemed to be in a pain-range all of their own compared to my friends. I was probably far from the mark but, as a group that met up in a pub, we did tend to sink quite a lot at the weekends and, having lost two friends to alcohol over a short time frame (one to liver disease, another to misadventure) I was brought up short in my own habit. I had no idea that the symptoms of Dysautonomia, a common co-morbid condition of Ehlers Danlos Syndrome, can mimic alcoholism with its chronic dehydration, fatigue, headaches and dizziness.
Around the same time as this became a regular occurrence, I became tired from very little effort (putting it down to life stresses) and there were episodes of struggling to breathe or feeling like my chest was too tight or constricted in some way, of bizarre neuropathic tingling both inside and out of the body and other odd stabbing pains and sensations. My mother, still alive at that time through with her own health challenges to deal with, became desperately worried about my cacophony of weird and wonderful, yet deeply bothersome and invasive symptoms and would ring me for daily for updates, though I hated to worry her so. One was that the inside of my ears would burn and burn with red hot pain, somewhere between itch and an electrical sensation but nothing like conventional earache. The only thing that gave me the remotest relief was a product for removing ear wax because, as it bubbled and fizzed in my ear passages, it was as though it scratched these deep itches for me in places I couldn’t reach, though you were not meant to use this substance as often as I did and it may have done more harm than good. Yet, if only I could describe the desperate need to get to these sensations, which were like the worst itch you have ever had, unrelenting and on the inside so unreachable, untreatable…going on and on. Doctors, as ever, had no idea except…guess what…steroids or antibiotics.
In fact, through these sensation, it was as though I could feel every millimetre of my inner ear passages so intimately…could almost see what these tubes looked like from the inside; their texture, their microscopic hairs, the twists and turns of the passageways leading to my ear drum. It was years later, after my infection-prone daughter was told she had the most complicated ear passages our GP had seen for some time, that my sister mentioned she had also been told she had “exceptionally curly ear tubes” by an ear specialist who said he would have really loved to be able to to study the whole of our family…in fact, he was quite excited by her, it seems; as though he had discovered the anomaly of his career. This strikes a cord as I have also been told my ears are very hard to see into and I sense all of my internal passages are kinked and curly, with excess material and many folds, in a way that is not so very run of the mill outside of EDS. Of course, inner “tubes” that are curly or made up of excessive, fragile or loose tissue, be those intestinal, vaginal or any other kind, only make for more infections and potential friction; which is typical of many of the mystery health issues I have had (ones which the doctor’s cure-all of antibiotics never resolved long-term, though I took more than my fair share of them for the first three decades of my life). Knowing this about my inner “tubes” sheds all-new light on the root cause of a lot of things, from IBS and colon issues to ear, throat, vagina and bladder infections.
When it comes to this bizarre degree of sensitivity “on the inside”, the same goes for my intestines and the process of digesting food; as though I can feel every moment of its progress through the different stages (and my sister says she can do this too). As a very young child, I would spit out food that I didn’t like the texture of (with a clip to the head from my mother if she saw me do it) and, as a young adult, I can now recall many times when I had a serviette held in my lap ready to hold parcels of food that I discretely removed from my mouth until I was able to quietly dispose of them, in restaurants and other polite scenarios where the food was not to my liking. If this seems over-fussy then, to me, I felt like I had no choice or risk gagging. Rather remove than subject my digestive system to anything that felt so wrong and I would often only know this as its texture hit my tongue or the roof of my mouth. These days, eating the wrong food can leave an impression of that food in the lining of my stomach, like an echo that I can feel for a very long time afterwards, and this can be enough to cause intense discomfort or pain long after it has passed through, so I have learned to be even more discerning than I was as a child. Fortunately, I seldom eat what I have not cooked for myself and am so discerning about the rest; and going plant-based was a giant progress leap. I might not have even thought to mention this bizarre anecdote if it were not for the fact I just read a similar account in journalist Laura James’ autobiography of her late-discovered Asperger’s “Odd Girl Out: An Autistic Woman in a Neurotypical World”. Yet I already know how this ability, I won’t quite call it gift, to feel every movement of fluid, every pop of enzyme, every firing synapse in the body has fed into my chronic pain situation since it is way way WAY too much information most of the time, yet I seem to be party to it all, whether I like it or not. My father, also Asperger’s in my opinion, had the same trait and it drove him nearly mad; said he could feel the blood valves opening and shutting in his heart (he had hyper-tension) and, of all the foibles that oppressed him most, his tinnitus was at the top of the list.
Me too. Tinnitus is often referred to in the context of EDS, so this was a huge lightbulb moment in my chamber of many light-pools around the topic. While I wasn’t altogether surprised, it was the particular way the symptoms are described in the forums that really got my attention. As someone who has had this for years, I am quite used to reading descriptions, on tinnitus sites, that are more to do with age related hearing loss or damaged ear drums and they have never felt quite like my high-frequency “sound” and the way it has increased in consistency and volume as I’ve reached my middle years. Yet the descriptions I happened upon in an EDS discussion thread earlier this week could have been me; from the high pitch and the nuance of these sounds to the way these people described having, at first, intermittent episodes, sometimes triggered by stress or tiredness or whatever thing is their particular overwhelm zone, which then at some point became permanent and unremittingly intense. This is what happened to me, post-menopause, and I feel that timing is no accident. I read one article speculate that, in some case, EDS seems to generate a sort of white noise in the body which the individual then becomes acutely aware of (I so wish I had made a note of where I read that description since it was definitely on to something). Reading the term “white noise”, either generated by the body or ringing throughout the body, nailed it for me; it is like I am hearing my own inner frequency, my engine room, my chi or life force, my very connection to the universe….how I interpret it depends very much on my mood and I try hard to make it into something positive but I won’t pretend that I don’t wish it would go away, become quieter or at least a little less relentless; my only remedy is distraction.
I only went through pregnancy once and, based on that first time, was rather glad that was the case in the end, though I had set out wanting multiple children. I loved the feeling of being pregnant (I now wonder if the boost of oestrogen levels played a part in that, see below) but, in the end, I became so bottom heavy in a way that my doctor couldn’t explain given the size of my daughter who was on the small size of average when she arrived. It was as though everything stretched downwards like a concrete brick in a sack. I also recall intense pressure on my organs which, given I was continuing to try working at a computer in my home office at the time, made sitting forwards at a desk so troublesome like there wasn’t room in me to bend forwards in a way my office-working pregnant peers didn’t seem to relate to particularly.
As for the birth, I was torn to smithereens internally, again for reasons they could never fully understand given her size and, as no epidural was available, being the middle of the night, I can safely say the experience traumatised me for a very long time afterwards. Honestly, I couldn’t understand the pain; why would anyone every put themselves through this again? I was then quite laboriously stitched together by a trainee nurse, after numerous botched attempts to insert a catheter which left me black and blue for weeks (struggling to find a sturdy enough vein is the same thing that happened the next time I was in hospital and I read this is a trait with EDS), the wound taking what felt like a very long time to heal. All I can recall about those early weeks was the pain and discomfort I was in and yet I self-berated myself for making such a fuss about such a natural process; why was I so different to anyone else that had just gone through labour? My ex-husband took one look at my over-stretched stomach and said he would never “fancy that” again and so began the demise of my marriage.
Where I had been stitched just didn’t feel right after that and became the source of years of pain, long after it should have healed, to the point I was finally advised to return for reconstructive surgery in the hope it “might make something better”. Yet I told myself I couldn’t take the time away from my parenting duties of a toddler, now two, for the time necessary to recover without weight bearing, given my ex-husband was less than helpful; but, really, there was such fear and resistance in me about going through another surgery, starting the healing process from scratch. Subsequent unavoidable surgeries occurred for a Bartholyns cyst and an ectopic pregnancy and all three procedure sites have remained the focal points of many years of nerve pain and non-specific yet intense discomfort at certain times; something I noticed long before I read that operation sites can be especially problematic for individuals with EDS, holding memories in their scar tissue that continue long after most people would have healed and moved on.
It was in the years after pregnancy that I entered the territory of one health problem after another, mostly affecting muscle, ligament, fascia and tissue, collectively labelled “fibromyalgia” yet that description always feel like a convenience and never quite enough for the broad spectrum of symptoms I was experiencing. It didn’t describe the waves of dizziness and feeling feint; of sudden onset exhaustion and collapse, as though I had been shot in the knees or become abruptly light headed, for instance. There were days and even weeks when I struggled to coordinate, when brain fog came in like a sea mist only hang there in my head for so many days that I went by on automatic pilot for what felt like half a month or more at a time. When I was more active, I still found I had to do things sitting down; that just standing up for a short time could exhaust me utterly and that, when I did (like when someone came to the door), I couldn’t think straight enough to respond to what they said or or hold coherent conversation whilst upright, though I would be better if I could sit down, lean back, lounge. Talking whilst upright became a thing to be avoided, as though the two activities together took me over the limit. In fact, the only person I could predictably talk to on my dog walks was my husband since his presence was benign; he took me as he found me, never expecting too much…so I could still breathe, stay upright, pace myself. Any exchanges where I had to think hard, use logic, employ nuance or social nicety or be on my guard were too much for me if I was in an upright position. It was around this time that writing became my new best friend and face-to-face contacts withered on the bough.
A consequence was that I ceased chatting on the telephone…with anyone…since our phone is in the hallway and it exhausted me to be there (I can’t tolerate the radiation impulses of a cordless phone) so those friendships that relied on chit-chat quickly died away, not that I had the energy for them any more in any case. I had, of course, given up work by now but had taken up painting as my relaxation therapy; yet, though it served me well to stand at the easel, to use my arms freely and gain better perspective, I soon found this was way too much and bought myself a kneeling chair in which I became rooted for hours at a time, leaning in close to my work in what was like a reverie that, for long periods, lifted me out of body consciousness and pain. Even then, my time spent doing this had to be balanced with other times when I was flat on my back, my day split between probably 30 per cent with an upright head to the rest at a slant; lounging on the sofa, propped up by pillows (and so it continues). Since holidays didn’t allow this routine, I would come back feeling far worse than I went, which became the track record of many years during which every pleasure had to be paid for by intensive recovery time and long holidays, especially, had to be paid for by a month or so crashed out in exhaustion. On the painting front, I began having issues with pain in my hands, fingers and wrist joints. Sometimes, after a long spell working, my fingers would become locked ridgid around the palette or brush I was holding or stuck in an oddly distorted straight-out but sort of crucked-backwards position and I would have to try and, gingerly, ease them out and back into their correct joint format. This turns out to be a popular topic on the EBS forums. Over time, as such episodes became much worse, I replaced actual painting with digital art and one of the reasons was that there was far less strain on my hands and, indeed, all my joints.
I also found that I could rarely cope with the shower and baths became my preferred thing. My husband joked about getting rid of our bathtub to be replaced by a wet room but I fought vehemently on this topic; I would have had to lie on the floor to make use of it. I heard an interesting theory from Anthony Williams the Medical Medium (in his audio on healing POTS syndrome, see more on its link to EDS below). He says the reason people like me can’t cope with a shower is that the water stimulates nerves which are already struggling, overstimulated and bearing toxic load, in the scalp, releasing waves of exhaustion as the body takes the onslaught. This is close to a theory that came to me on one of the occasions when almost feinted in the shower. Sometimes, when I am really deep into a phase of struggling, the water droplets feel just like shards of glass falling onto my skin; really, so incredibly painful like a window has shattered above my head.
Shops have the same effect of suddenly exhausting me, making me lightheaded and dizzy with blurred vision, which is why I avoid most of them, especially large supermarkets and certain fashion chains where the electric lighting and security devices around the doors seem to wind me and make me swoon into collapse as soon as I go near.
When this all started happening to me, did any of this strike me as normal? Was it just some weird and wonderful side-symptom of fibromyalgia (which didn’t seem quite right)? I didn’t know, back then, about POTS (Postural Tachycardia Syndrome), which is closely linked to EDS. From the PoTS UK site:
“Simply standing up can be a challenge for affected people as their body is unable to adjust to gravity. PoTS is due to an abnormal response by the autonomic (automatic) nervous system and is characterised by orthostatic intolerance (the development of symptoms when upright that are mostly relieved by lying down). Symptoms include palpitations, lightheadedness, fatigue, sweating, nausea, fainting and headaches, and are associated with a persistent increase in heart rate from the lying to upright position.”
Again, as with both Asperger’s and EDS, I had happened upon the coincidence between PoTS and my own symptoms a long time ago but I think I had reached a point where I couldn’t cope with annexing yet another health condition to those I already felt like I was trying to juggling; I was beginning to sound like a handful of pamphlets picked up in a doctor’s surgery. It was only when I had the monumental lightbulb moment about Asperger’s and EDS that these additional pieces, finally, joined together and seemed to make such indisputable sense to me. Instead of feeling more confused, I now felt less so since a pattern was starting to emerge.
Its was during those first deep-dark fibromyalgia years, as I now regard them, that I underwent most of my hands on physical treatments, trying a variety of different approaches…everything, really, that I thought might help with my pain and mobilisation and yet many proved so disappointing. For the record, I have wondered why one of those therapists from the early days didn’t pick up that I was hypermobile and yet, irony was, I had become so stiff and restricted by the time they saw me that I was, if anything, hypomobile now, at least externally…as though trapped in a straightjacket of pain. One, however, commented that my daughter, who I took with me for a treatment of her own due to intense “growing pains” similar to those I used to have, was hypermobile and should avoid doing ballet or gymnastics or she would make problems for herself later in life and I can recall thinking at the time “oh that’s what it is”. I had never given these bendy traits, which I remembered so well, any particular name until then. So far so good in her case; like my sister, she shares some of my traits but has not experienced regular pain, even though she enjoys running (which I could never do) and I hope it can be avoided. If there is a viral component to my EBS then I hope she lacks it and I also wonder, from her example, whether with different outlook, better childhood diet and less emotional trauma or other stress, a person could have EBS traits but not have them develop so much.
Some of these treatments I sought helped to a point but only to seem to make me worse after a while and I am now left wondering if this was down to the fact I was being treated without knowledge of EDS or PoTs since there are subtle yet important safeguards and limitations to be taken into consideration when dealing with someone whose connective tissue is soft and prone to over-stretching; also someone for whom any exertion can generate an over-exaggerated fatigue or nerves system response, sometimes lasting many days or weeks. Pushing very hard into tissue is the last thing someone with EDS needs and yet I submitted to deep tissue massage and some really quite invasive myofascial releases in the belief that they would do me good; often backfiring with spectacular effect. The same could be said of some of my own efforts to mediate my issues; I could do gentle yoga in small bouts from home, yes, but to put myself though an intensive class (even a yin class….since the asanas are held so very long and do deep tissue work via, say, hip openers that were way beyond my capability) proved a mistake on more than one occasion, setting me back with dreadful, crashingly painful, effect.
Pain, pain and more pain have characterised the last decade and a half of my life and even the twenty or so years that preceded that, now I am truly honest with myself, and yet with very little to show for it that others would find relatable, demonstrable, explainable or, in some case, believable yet it is my daily reality and the thing that keeps me tirelessly researching into why this is happening to me and whether there is more to it than “just” fibromyalgia, which never seemed the big enough umbrella for all my experiences.
Amongst the most persistent chronic pain issues have been these, all of which have known connections with EDS: Foot pain (related link – Chronic Pain from Ehlers-Danlos Syndrome Leads to a Drastic Decision), burning skin and neuropathy pain, bone pain, labial pain, jaw pain (more on that below), shoulder pain, neck pain, coccyx pain, hip pain, knee pain, ear pain, teeth pain (without dental cause), uterus and ovarian pain, costochonditis pain (chest wall pain), colon pain, bladder pain, joint pain, generalised intestinal pain. These are just the highlights meaning those which have attracted significant efforts to solve them because they have proved most puzzling yet profoundly affected my life. This short video, where women paint their EDS pain-zones, is an eye-opener to anyone failing to grasp how broad-brush and all-pervasive the pain of this condition can be. As one of the women says, it’s not that we have a low tolerance to pain, some of us have a very high tolerance to pain; its just that the pain levels are so very high and relentless.
My health issues have included extensive challenges relating to what you could broadly term “endocrine” disfunction, which it would take a whole other post to even summarise in the most generalised of ways yet they have been persistent and life-altering, not to mention baffling to me and various medical professionals I have seen. According to this study from 2018 “A Cohort Study Comparing Women with Autism Spectrum Disorder with and without Generalised Joint Hyper-mobility”.
“Results of this study indicate that the ASD/GJH phenotype in women is characterised not only by classic symptoms of EDS/G-HSD such as generalised hypermobility and chronic pain, but that immune and endocrine system involvements may be extensive. In addition, phenotypic expression of this immune disorder is mediated by the endocrine system and the ongoing presentation of symptoms throughout life are guided by immune-endocrine crosstalk”.
Yet it is so easy to go off at a tangent looking for answers in the thyroid, the liver or the gut without noticing the broader root cause of EDS. This has often led me down blind alleys of investigation and attempts to solve, for instance, IBS with dietary changes which weren’t always warranted since the issue was more functional than nutritional. That’s not to say that all the dietary changes have been wrong; many have quite been essential and life improving, but to bark up the food intolerance tree for too long, I now consider, was a narrowly missed mistake since something told me it did not hold all the answers.
Over the last five to ten years especially, there has been an endless tirade of non-specific genitourinary and bowel issues best described as pain and heaviness. I’ve written before about my painful pudendal nerve, about interstitial cystitis and the kind of lower bowel issues including rupture and nerve pain that I tried to make sense of through the lens of IBS and food sensitivities. More than any of those things, or overhanging it all like a neon sign, it felt as though my pelvic floor was no longer supporting me; my base was falling out. During episodes of increased pain, it was though everything has shifted downwards and was pressuring other things that were inflamed and so tired of the pressure of it all. It’s a bizarre feeling to sense that your innards are no longer staying put where they are meant to be. I began to turn my attention to hormones and in this area of focus I found a great many answers, long before EBS came along to fill on the blanks.
What is the hormone connection and does it shed light on the fact that, in some cases (my case), EDS first waved its flag during puberty? I feel sure there is a direct connection between EDS and hormones and, particularly, with progesterone and oestrogen levels.
“It has been known that there is a hormonal influence on joint laxity. The female hormones affect the ligaments at the cellular level altering the production of collagen and the cells that support it [Magnusson, 2007; Hansen, 2008]. Females generally are more lax than men which in part is due to the shape and form of the female body, musculature and types of activities in addition to the hormonal influence. Some observe that their joints seem “looser” or more unstable just before their menstrual flow (periods) [Child, 1989; Friden, 2006].” Dr. Brad Tinkle, from Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Syndrome?
Decreased oestrogen has the effect, in my experience, of turning my ligaments to chewing gum, as I noticed consistently when I still had my menstrual cycles. I particularly got to know this about hormone levels during the time of my life when tackling “oestrogen dominance” became one of the main focal points of my recovery progress, a few years back, given I had started to notice the correlation between this phenomenon and exacerbated pain. Oestrogen dominance is something that women are at risk of during perimenopause as progesterone levels start to reduce; but it is a state contributed to, in no small way, by artificial oestrogens found in the food chain, water supply and atmosphere of a world dominated by the production of plastics (a well known source of these pollutants). Too much oestrogen, of any source, and my headaches would be intense, my breast pain intolerable and my emotions all over the place…plus I was tense and anyone with chronic pain knows that tension is the enemy of pain. The worst culprits, when it comes to adverse symptoms and even cancer risks, seemed to be man-made or xenoestrogens, which are similar enough to the natural version to bind to the body’s oestrogen receptors, so I did what I could to eliminate them from my environment and diet. The trick seems to be to rebalance progesterone levels and add in natural sources of oestrogen via food sources, which then attach to oestrogen receptors in the body first, reducing the likelihood of environmental ones attaching to those same receptors. I am paraphrasing what I have learned about this topic over the years and suggest you do your own research to clarify and update thus summary, since I am now past the perimenopausal phase and beyond such cycles.
In my case, I was able to achieve a great deal of stability versus the oestrogen dominance phase by introducing natural progesterone cream into my routine from 2011 (ongoing), on the advice of a Harley Street specialist. Yet the need to keep an eye on the overall progesterone-oestrogen level see-saw has continued since, as I got deeper into the perimenopause phase, I began to notice other symptoms that were associated with oestrogen lack, as my body’s own production of this hormone went into natural decline. This was the phase when I began to have a newer, more intense, kind of headache and alot more trigeminal and other pain to the head, for which I received a lot of treatment. I became profoundly sensitive to other environmental triggers to my usual ones (which used to be more obvious such as light, sound and smell), my awarenesses now venturing into the unseen zone of aggravants including EMFs from cell phones and wifi, bluetooth and pulsing electrical currents. I also began to experience severely burning skin and randomly stabbing, hot and sore skin sensations, including allodynia, which could make even my clothing hurt to wear. Areas of hyperpigmentation began to appear over the sites of two operations from many years ago, even though the tissue over one of these was never cut as it was done by laparoscopy. The flesh over these sites became irritated and fragile, almost but not the same as eczema and, to this day, I have to maintain a careful routine of applying lotions to ease the discomfort or any friction.
On top of these came the usual symptoms of approaching menopause, such as thickening of the midriff, only in my case there seemed to be so much bagginess of excess of flesh. It felt as though my uterus was now permanently expanded to pregnancy size, even though I am quite petite and compact over all (not fat) due to my modest vegan diet and yoga. Yet there sits this victim to gravity, my lower abdomen, and it frequently fills me with frustration or despair as I long to fit into flattering clothes like I used to. Yes, this is just how like a lot of middle ages women, who still drink and eat what they want to, feel but, with my careful health regime, I should be doing rather better; in fact, I would expect to be so lean by now.
Why does this happen in mid-life? Because oestrogen (aside to its protective qualities) is required for the production of collagen and collagen, if I have EDS, is my deficiency. Its as though my elastic is stretching and, whilst the plus is that I still enjoy relatively unlined skin and a smooth complexion for a woman in their fifties, the downside is that I am losing what bit of tautness I once had; and will continue to do so if I don’t work harder at it than most. More concerning than even the aesthetics is that the same can be said of my internal organs and supports and that I have to keep on top of things to keep myself upright and functioning at all.
So, the need to work at rebalancing my hormones continues to stretch my ingenuity. If I over encourage oestrogen then I can start to gain back some of the symptoms I associate with oestrogen dominance such as breast pain, headaches and mood swings. But if I don’t…
I now tend to think of my body as a string bag (skin, muscles, ligaments, fascia) containing groceries (my organs and vessels…all of which have their own collagen container; like the wrapper around the food product). At certain times (oestrogen deficiency) its as though the bag becomes so stretched and distorted with the sheer weight of all the groceries inside, which all fall about in disarray, some of them becoming compressed or even damaged or leaking from all the sudden movement, dragged down by the inevitable force of gravity. When I was still having a menstrual cycle, at times when ostrogen dipped low, I could feel this pressure occur against my organs, against my kidneys and uterus, the pressure on my bladder that would leave me needing the bathroom every five minutes. I would come back from a dog walk feeling like I needed to almost hoist myself back up, like one might pull up a sagging pair of trousers worn without a belt. I would feel so uncomfortable from al the downward pressure that I longed to sit down and remove gravity from the equation, just fo a time. I noticed that my knee joints became soft like marshmallows exactly around mid-month, though they had been fine the day before, when oestrogen levels begin their sharp monthly decline, continuing on until my period. This affected me so much that I would only ever plan to do things on that first week or so of my cycle.
Now I am past menopause, its as though the needle is stuck in that territory and I must treat every day as I learned to do when my cycles were still spinning. I must apply what I have learned all the time. This is my new normal…and waking up to EDS has jolted me to the realisation that I cant afford to be complacent; this is not the usual, inevitable, effect of “old age”; for me, this has more dire and immediate consequences.
What those parts of my cycle taught me was that, when that dip in oestrogen occurred, my ligaments became, quite suddenly, unreliable and stretchy, making it hard to walk and opening me up to much more likelihood of injury. I learned to be extra careful at those times, walking with a soft bouncy gait and modest steps rather than stiff, fixed limbs or by over-stretching. I learnt also to be cautious of those times when I was standing upright because the tendency to lock my knees beyond their natural limit at these times of hypermobility, in order to make myself strong enough to be upright for more than a minute or two (like I was trying to lock the joint at maximum capacity to prevent myself falling over as you would tighten the wing nut on a folding piece of furniture) could cause me injury even as I peeled the potatoes or chatted at the front door. It was after the event that the stretched ligament would cause all the problem and I could be left limping and weak for days if I didn’t watch out. This oestrogen-affecting phenomenon of soft ligaments is a risk to all woman, increasing risk of “catastrophic injury” in women athletes when oestrogen is low (“Effect of Oestrogen on Musculoskeletal Performance and Injury Risk. “) so how much more so in someone with EDS? I certainly know about this more than most since reaching for a cup of water or turning my head suddenly has been known to injure me quite “catastrophically”, with long-lasting repercussions, at these extra vulnerable times.
At the same time, I can’t afford to become afraid of movement or standing and must keep to a regime of weight bearing and walking, yoga and variance of posture, in order not to succumb to so much softness that I lose all ability to function. There is careful and then there is coddling and it is up to me to provide the necessary structure in the form of good habits that make the best of what I have got.
Of course, diminished oestrogen, thus collagen, also results in dryness and friction, less protection as skin and other membranes become thinner and all those other deficiencies (hair quality, gum health, vision) associated with menopause. These are an even higher risk for someone with EDS, who may be compromised in these areas to start with. This turns menopause into very tricky territory indeed for a woman with EDS and I had noticed these effects in my own body, (why was I having such a hard time of it compared to other women?) before EDS came along to shed its light.
So do I continue with progesterone, which has helped me so much through the perimenopause phase? This is a conundrum since it is known to increase joint laxity (for instance, there are advisories about not giving progesterone only contraceptives to people with EDS…though these artificial “progestogens” are not the same beast as natural progesterone cream or, indeed, that generated by the human body). Indeed, progesterone is well known for its effect, in pregnancy, of increasing laxity in the female body and to increase the size of internal structures including growing the uterus from the size of a small pear into something that can accommodate a full-term baby. This sounds like the opposite of what I need at this stage of my life when laxity is a foible. I am left wondering if I will ever get the balance quite right but I am settled upon a a mixture of physotestrogenic support, including in supplemental pill form and phytoestrogenic herbal teas and flax seed, combined with modest use of progesterone cream for the foreseeable future (my personal choice). I stress, this is my personal decision; I don’t advocate it for any one else and it is something I will adapt as I feel necessary.
Incidentally, on this topic, an interesting thing I discovered this week is that red wine is considered to be oestrogenic due to the presence of resveratrol, which is naturally present in grape skin. According to a Barry D. Gehm, J. Larry Jameson, M.D., and his colleagues at Northwestern University Medical School (reported in Science Daily), resveratrol has a molecular structure similar to that of diethylstilbestrol, a synthetic oestrogen. I’m speculating wildly here but my understanding is that synthetic oestrogens don’t have a good track record in the body and diethylstilbestrol has been associated with increased risk of cancer in mothers, and their daughters when prescribed during pregnancy, as it routinely was in the 1960s and 70s. In fact synthetic oestrogens are what trigger oestrogen dominance symptoms since they aggressively attach to oestrogen receptors in the body, taking the rightful place of natural hormones and, in fact, encouraging a decline in their production. In other words, my speculation, I wonder if red wine actually causes a drop in natural oestrogen levels in a similar way as when exposed to xenoestrogens. I also wonder whether those with EBS are at more risk than most, their collagen deficient bodies gobbling up oestrogen wheresoever they can find it (a theory I touched upon in another post, regarding those with a predisposition for pain, long before researching EBS).
This information about wine caught my eye because I had been pondering how a drop in natural oestrogen levels causes my knees ligaments to turn into chewing gum or pieces of over stretched elastic. Well, wine does that to me too…even the smallest glass, or (sometimes) even so much as a sniff of someone else’s glass being enough for me to feel the effect which is, unfailingly, in my knees. This figures when you consider that alcohol makes most of us relax; but to suddenly relax more when you have EDS could be a bad idea, structurally speaking (this links back to dysautotonia). Great for de-stressing and even taking away the pain for a while, yes, but for the long term effect on collagen-dependent tissue (in my experience), or for someone prone to fall off their see-saw, their autonomic nervous system going into complete disarray at smallest provocation, not such a great idea in any quantity….and not if it comes with other serious health risks either. Perhaps this oestrogen-dominance effect is why alcohol became so synonymous with pain for me that I gave it up twice; once while I was trying for a baby and for a while afterwards and then for over three years in the run-up to menopause. I still consume only the most comically small amount from time to time, sometimes no more than a sip of someone else’s drink and its enough; I can feel its effect.
By the way, I am convinced (though I find no discussion on the topic) that oestrogen levels are affected by lunar and solar cycles since these yoyo-ing effects are profoundly linked, in me, to varying times in those cycles. I have noted oestrogen deficiency symptoms are much worse in waxing gibbous and full moon phases and during solar minimum…and two of the most notable times of my life for intense EDS-like symptoms have been now and in 2008 -10 when the last solar minimum phase was in effect. I can match all the times when I have experienced “odd” pockets of tissue heaviness and bulge to solar minimum phases across all of my life, including childhood (and the opposite factor with solar maximum). I also can’t resist pointing out that my mother became seriously and suddenly unwell and died of enlarged liver and cancer at the very point of solar minimum, one month before the next solar cycle began, in 1996. Environmental pressures upon the human body increase massively in solar minimum (these are measurable effects, including cosmic rays that penetrate the earth’s atmsophere) and the full moon has long-noted effects upon human physiology. I also notice this effect in the autumn/winter times of the year compared to the opposite seasons. If oestrogen’s protective effects are lowest at these times, just when they are needed the most against the onslaught of environmental factors, then this encourages me to do what I can to rebalance my own hormones.
Other effects I’ve noticed, over the premenopausal and menopause era, are that my hair and skin have become markedly depleted though some effects earlier than I would have expected. In fact, my hair (which has always been extremely fine) became so thin on the front- top of my scalp from my late 20s (at solar minimum, during one of my heavy phases) that a large circular patch near the front completely lacked pigment; not so much like it was white but that it was glassy and lacked substance. From my mid 30s, continuing, I noticed flashes of pink skin through hairline around that same area of scalp on flat-hair days and have had to learn to work with thickening products to at least improve the appearance of thicker hair (no, none of the long-term remedies have worked). My eyebrows have thinned a great deal and are sparse on the outside.
Of course, my skin is suddenly dryer and more prone to irritation and is certainly showing its age more; less in the form of wrinkles since I still have oddly velvety skin for my age but in terms of sag around the jowls and, of course, the midriff, under arms and thighs. I share most women’s’ vanity around these points and do whatI can do. More concerning has been the skin pain; the increased of burning, stabbing, electrical, sharp sensations and areas of lost pigmentation or vitiglio (another one found on the EBS forums), dark pigmentation as above and broken skin without particular reason.
On the skin collagen topic, I was in my mid 30s when I was first told by a beautician who happened to be visiting my regular hairdressers that my collagen was in a terrible state. I was yet to show it; enjoying the same velvety, oddly youthful skin that my mother also enjoyed until almost her dying breath, without the merest hint of a line or crinkle in my face (but then EDS is known for its “velvety skin”). At that age, people routinely mistook me as being ten years younger than I was, which was great for the ego of a recent divorcee yet this woman with her “gizmo” told me the collagen in my face was terribly depleted. The image she showed me from a scan she had performed made me look as old as the hills. Of course, she had a range of products she was more than happy to sell to me, to combat or even halt the effect but I went away empty-handed yet perplexed by what she had told me. I had spent a fair amount of time in the sun, as most people do in their youth, but I had always felt my skin was on my side and that I took reasonably good care of it.
This bewilderment was a little like how I felt when I was told, age 40, that I had osteopenia, though I was a good decade off menopause so (I had assumed) quite a way off from the need to worry about fractures and hip replacements… yes, an EDS link has been found with osteopenia (Assessment of bone in Ehlers Danlos syndrome by ultrasound and densitometry – Annals of the Rheumatic Diseases). Of course, like most women my age, I am concerned at the prospect of future bone fractures (my mother underwent hip replacements following falls in her late 50s) yet realise I have other disadvantages to increase the likelihood; so, I take supplements and I take care!
Continued episodes of vulval pain and pudendal nerve pain (topic of a previous blog), bladder frequency, interstitial cystitis, rupture, colon pain etc etc have only become more frequent and bothersome with the loss of pelvic floor tone.
Temperature regulation is an issue; yes, intense hot flushes but also cold flushes and the need for woollens in bed or on otherwise warm days, and more Raynaud’s phenomenon. Again, these are classic EBS territory.
As touched upon before, another thing that I learn people with EDS may overreact to is pharmaceutical medications and that is me to a tee, to the point I no longer take them. The technical term I came across is that it can “alter metabolism of medications” EDS Drug Metabolism | EDS and Chronic Pain News & Info. These days, I shun prescription or even over-the counter medications unless there is no other option and the effect is needed, not just desired (for instance, to solve, not just mask pain) since my reaction to them is so exaggerated. I have terrible track record with unpleasant side-effects from medications containing ibuprofen and with decongestants for colds, for instance, which is just the thin end of the wedge. The last time I took a prescription drug, which was an antibiotic, I thought (without exaggeration) that I was dying from the terrifying side effects I had in the night and was almost hospitalised; one of the most frightening experiences I can ever recall.
Another thing I over-react to is local anaesthetic. When this was used for a routine dental procedure a handful of years ago, my heart rate and adrenalin went off into such an over-reaction that I thought I was having a cardiac arrest. I can still see what I saw then, which was as though I was in the room yet a long way from it, as though viewed down the end of a long white tunnel and, at its end, I was watching my dentist panicking, saying over and over again “oh my god, oh my god…” as the nurse tried to calm her down and handle the situation. All this for the simple fact there was adrenalin in the mixture she had given me, which is quite usual in the case of dental aesthetic, I am told (I now ask for one without). I remain so very wary of dental procedures, which is not helped by the fact it seems to take more anaesthetic, and longer, for me to gain the required effect or I still feel everything going on. Again, I read that is typical of EDS; an effect that lead to clinicians assuming they were overstating the case until I study brought to light that it is indeed true. From the study Local anaesthetic failure in joint hypermobility syndrome Alan J Hakim, Rodney Grahame, Paul Norris, and Colin Hopper:
“When asked, all these patients reported previous experience of partial or complete failure of local anaesthesia in dental or obstetric procedures—for which reason some had been dismissed as hysterics”.
I can well identify with this observation as I know I have been treated thus by many practitioners over the years who refused to believe I could still feel the dentist’s drill or the procedure underway and therefore that I had an over-active imagination at work. Believability of the person EDS is something that is overdue for review, as well as the need to get over them mindset that it is so rare, because it is not! It’s the reason why the Mind Body EDS charity have adopted as their symbol the zebra. To take the story directly from them:
“Many people who suffer from rare diseases, such as Ehlers-Danlos syndromes are known as medical zebras. The zebra originates from the phrase doctors are taught in medical school “when you hear the sound of hooves, think horses not zebras”. Doctors are taught to assume the most common and simplest diagnosis (horses) which is usually correct, to avoid misdiagnosing patients with rare illnesses (zebras). Yet sometimes, when you hear the sound of hooves, it really is a zebra”.
Temporomandibular joint disfunction is another of my issues with which my dentist has been deeply concerned for many years; and it has been a life long issue for me, causing intermittent and sometimes unbelievably intense discomfort or pain in face and teeth or generalised aching and clicking at the mildest of times. At the peak of its symptoms, I would sometimes lock in the jaw joint, with my mouth still wide open, trapped in unspeakably agonising pain, the tears rolling down my face yet unable to even begin to recover or speak out until I centred my reaction into a calmer space; enough for the joint to spontaneously release. This propensity to lock, grind or experience intense pain during or afterwards has often made holding my mouth open wide enough, and long enough, for dental procedures a real challenge; and I am typically left wrung out with exhaustion in the days after a treatment or even a dental clean. My dentist repeatedly urged that I consult a maxillofacial consultant to consider surgery yet every fibre in me told me that having my bone structure and associated tissues butchered by a scalpel was quite the wrong approach for me; indeed, I read many anecdotes of surgery creating far more problems than it solved for some individuals. Instead, I sought the treatment of my myofascial specialist and she gradually, gently, tweaked all the connections around my jaw, neck and head into a much more comfortable place over a long period of sessions; since which it has, thankfully, remained more benign to this day, apart from the occasional brief flare up (often triggered by hormone fluctuation) but nothing like as bad as it used to be.
Other EDS teeth issues have abounded; including receding and bleeding gums from a young age (as in the case of my mother) though I take very good care of my teeth and the need for fillings or loss of tooth enamel though I don’t eat sugar. Another phenomenon that I was interested to find in one of the forums is that I have episodes of my teeth feeling loose or “wobbly”. This can affect the whole top row or just a couple at the front; for a time, feeling as though I can click them back and forth in the gums with my tongue and yet, once the episode is past, they return to their normal tight fitting again. I suspect this is to do with varying hormone levels. Discovering others with EDS experiences such as these is such a bizarre relief.
On the topic of my long running myofascial treatments, I want to mention that I also spent some time with my regular therapist’s colleague, who was a considerable expert in myofascial approaches, lecturing all around the world on cutting edge approaches as well as treating hundreds of patients with all the fascination of a man who clearly relished his craft. Given that, I have never forgotten one particular day on which he confessed to be quite bewildered by me. During these sessions, the room would go so quiet that you could hear a pin drop; the manipulations to my body tissue that he would make with his fingertips being so minuscule and subtle, yet effective; as though he was listening to my body through all his sense. On this particular day, he had been working on my legs for some considerable time and I could tell he was perplexed, even before he, quite unusually, broke the studded silence to announce that my body tissue “behaved” like no other body tissue he had ever worked on; it clearly wasn’t delivering the results he had come to expect. Being a man of few words, he didn’t deign to enlarge on this any more than that but the comment has stayed with me ever since.
There is a great deal more that I could add to this initial post on what I feel will be a long running topic (and, certainly, more material for my book) but I will bring it up to date with this anecdote, which feels relevant because it points out how the most ordinary of things can prove to be so challenging to someone with EDS, unhinging their health ina way that seems out of proportion.
This year, or at least at its start, I felt as though I was making great headway in my health and was feeling relatively robust, for me. I have learned to work with my health issues, however I happen to label them, in a way that is as applicable to one condition as to another; a big part of the approach being the same regardless. It involves good sleep and pacing myself, excellent organic plant based food, plenty of good quality water, yoga, mindfulness, self-care as priority, living life on my own terms, avoiding stress and other triggers, rejecting quick fixes and conventional approaches that “do harm” such as adding additional side-effects, turning to nature for answers where I can, spending time in nature as free medicine and being open enough to find joy and gratitude in all things, even some surprising places. This “kit” of approaches applies whether what I am tackling is fibromyalgia, EDS or whatever the next piece of the jigsaw is that happens to fall into place.
Yet, for all I had made all this headway, I experienced a monumental crash in my health in August and am still quite set back by the effect of what happened. There were some triggering circumstances and, in the the light of EDS, attempting to cycle the week beforehand may have been a big mistake (a classic case of over-ambition, to which I am prone) but the other thing in common with another time of “crash” was a too-soft mattress where we were staying. When this happened on holiday a few years ago (during the last solar minimum, incidentally), I was walking-wounded the whole time I was there and it took weeks to recover and the same thing, but much worse, happened again in August; as though a lynchpin had been pulled out of the very structure that holds me together and I was suddenly invalided, overnight.
Fear of over soft beds has now become “a thing” for me; so much so that I am pre-checking the likelihood with each and every one of the future bookings we have for the next few months (short breaks being our new thing; a way of dealing better with the my apparent inability to travel away from home for extended periods). These kinds of request can make the person with EDS sound over fussy or hypochondriac; but I would say they are extremely necessary…as are the structures you give to your own life, made up of positive attitudes and routines, dairies of symptoms and remedies, the kind of firmness that uses the word “no” when you can’t manage something, and to speak up for yourself in the face of any naysaying from other people. If your body is built on the soft side then its time you got more structured in yourself; which is an insider job. We are the very opposite of an armadillo; we are as inside out as it gets but it is our strength of character that makes us who we are. In getting to know ourselves better and standing by ourselves, we can forge an appropriate path forwards like anybody else.
The biggest thing we have to deal with, as we get older, is gravity and whilst advice for other people might be to keep as mobile as possible, do exercise, be upright and weight bearing, do kegels….for us the advice has to be rather more cautious and, in some cases, simply doesn’t apply at all. In order to function, I know I have to keep my legs raised, to lie down more so than subject myself to (any kind of) chairs, to relax and not force, and to put my hands in my pockets if I feel my shoulder joints are struggling from too much swinging of arms on walks, contrary to popular advice on good walking posture. Advice around doing kegel exercises for those with EDS-related pelvic atrophy and interstitial cystitis is mixed and sometime contradictory so I suspect it will have to be trial and error. One video lecture that I watched on Urogynolcology for EDS strongly suggested recruiting a specialist pelvic physiotherapist who knows about EDS. I have now located one that I might contact if I ever feel the time has come to seek help.
Can I supplement for EDS? I don’t know any of this for sure but I am going with MSM and silica, also those phytoestrogenic teas and supplements plus (as ever) natural progesterone cream as my approaches. Continued daily celery juice offers beneficial “salts” plus CBD, lemon balm and boswelia assist in pain relief; infact, CBD is getting some great reviews in the EDS community. None of this is a big change from my routine before except, perhaps, more phytoestrogens and greater effort to remember to take the first two things on that list. Antioxidant food sources and great moisturisation products are even more important than for most people.
It all remains work in progress yet I know I have my work cut out, in the next few years, in quite a different ways to how most post-menopausal women are affected by the onset of their senior years. This new light shone on the extent and complexity of the issues I have been experiencing, way beyond just those described by the terms fibromyalgia of chronic fatigue, is something for me to take in slowly and progressively whilst appreciating how this has been such a rough ride (and then some, and we should honour that in ourselves) and it’s not over by far. I’ve also been made to appreciate that this is not only a disposition of high sensitivity that I am dealing with here but a mechanical situation, which adds a whole other dimension to how challenging life with a physical condition such as EBS can be. Yet the daily realities of such a life would be so much the harder to swallow without having found this missing piece of the jigsaw and so I am extremely glad to have done so. As with discovering I am on the autism spectrum, this information has somehow has added far more than it has taken away since I now know myself far better and that, after all, is all that life is truly about, however else we may dress it up in more complicated trappings. My situation hasn’t altered but I have shed far more light on it now, which is such a positive thing to take with me, going forwards. If any of what I have shared has shed light on your situation then I am very glad.
This blog, it’s content and any material linked to it are presented for informational purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. The material and opinions shared are anecdotal and should not be considered to be medical advice or diagnosis. This article does not constitute a recommendation for the treatment or choices described and the effects related are my own anecdotes, not a prediction of how anyone else might respond. Please consult with a licensed healthcare professional if you have or suspect you might have a health condition that requires medical attention or before embarking on a new type of exercise or physical activity.