This isn’t the post I intended to share next, at all, as I had something else up my sleeve but a fascinating nugget of science came to my attention last night on the topic of Ehlers Danlos and it really set my cogs in motion this morning (at the typical time of 4am).
I’d been pondering EDS and hypermobility syndrome more than usual this week as I’ve been networking with a couple of people who also have these conditions, having made contact with them via the Nordic walking coach I mentioned talking to in my last post. I was searching for some information relative to one of those conversations when I happened upon this piece of science in an article entitled “People Who Are Double-Jointed Are More Likely to Be Anxious: An underlying collagen abnormality may heighten both flexibility and fight-or-flight response” in Scientific American. It quotes:“Joint hypermobility has an impact on the whole body and not just joints” from Jessica Eccles, a psychiatrist and researcher at the University of Sussex. This observation led to various studies including research led by Rocío Martín-Santos, now at the Hospital Clinic of the University of Barcelona, who discovered that patients with anxiety were 16 times more likely to have lax joints, findings which have since been replicated in large populations.
The connection between EDS, particularly hypermobility type EDS, which I have, and anxiety is fairly well established but Eccles and her team’s discoveries led her to this theory as to why (from the same article):
“They uncovered a simple yet powerful mechanism behind the link: the collagen abnormalities that make joints especially flexible seem to affect blood vessels, making patients prone to an accumulation of blood in the veins of the legs. This pooling may lead to exaggerated cardiovascular responses to maintain the output of blood from the heart. When the heart has to work extra hard just to circulate blood, it brings the entire body to the verge of a fight-or-flight reaction, requiring very little to set off panic”.
This isn’t altogether surprising to me as its akin to what I had already surmised myself, though I had thought of it as less a case of “blood pooling” than a generalised feeling of all my body tissues heading south at times of an EDS flareup. Its as though I, internally, lose the contest with gravity and all my body tissues put pressure on everything else. I should add, I am not overweight, though the amount of discomfort I have been in lately has certainly spurred me on to try and lose a couple of pounds, hence another incentive to increase my walks.
In my early morning reverie, I got to thinking what this must feel like, if blood pools in the legs more than it really should on a semi-regular basis. What I imagine “would be” the logical effect certainly correlates with my experiences including the sudden dump of heaviness in my feet and legs as soon as I become vertical again (ouch). Over the last 5 to 10 years, aside from increasing issues standing for too long, I have found it harder and harder to sit in a conventional chair and have moved from the usual desk for working and dining room table for eating scenarios to the point where most of my time is now spent in a more recumbent position, through necessity, and where I eat my meals on my lap, barring special occasions. This is not out of preference; I miss the days when family meals were always around the table, but I had hardly noticed until now how the need to change to a different, more comfortable, way has altered the landscape of my life to where the little office I set up for myself is almost never used any more; I just cant deal with my legs being downwards for very long. On this topic, I noticed the other day that the coordinator of the local EDS support group rides a recumbent bike.
The milestone, looking back, was when I had to bring a reclining, gravity-less deckchair into my house over the summer of 2016…later replaced by a special recliner chair that does the same thing in a somewhat more health-oriented way. When I work, now, I create a workstation at the corner of my sofa with a desk that swings over my lap so I can elevate my legs (and I sit on a memory foam mattress topper to cope with awful pressure-pains in my rear). If I’m honest, the pain I was experiencing sat at an easel is one of the main reasons I shifted from oil painting to digital art three years ago….marking the end of a steady progression, downwards, from when I used to stand up to paint ten years ago, to where I moved to a chair, then a kneeling stool and now, well, this rather too familiar sofa where my days and nights are only differentiated by the switching of ends. No wonder my life had become somewhat tedious and (until last week) depressingly closed off from activity…
Which is why I decided to try and get out more, be outside, do more walking…hence the Nordic walking initiative. Of course, the urge began last summer with the longing to get my bike out, like the good old days. In the light of “blood pooling in the legs” I can only imagine what sort of confusion the motion of cycling threw my body into after all those years, especially as (being me) I launched straight into a couple of longing rides out, thinking I was enjoying myself and coping with the exertion…and I was, my general fitness isn’t all that bad and I felt almost like my old self while I was doing it.
It was a couple of days later that the issues began, following an almost 5 hour car journey to Shropshire during which, due to some aches in my back, I kept the electric seat warmer on for quite some time (I know, given I’m electrosensitive, not the best idea given I only use it for ten-minute bursts after a particularly cold dog walk, normally). Combined with a mattress that was rather too soft in our holiday rental, here’s what I think happened. Whilst cycling, my blood was literally trying to keep up with the need to circulate against the ever-altering angle of my legs, up and down, up and down, tending to pool in my pelvic floor region. The car journey, again, did the same thing as I spent quite a lot of it crossed legged to keep my legs elevated but the car seat is like a bucket-shape and so all my body fluids would have ended up pooled in my lower abdomen for the full four and a half hours (I pretty much begged my husband to stop but, given it was chucking it down with rain, he was determined to get the journey done and dusted in the Friday afternoon traffic so we could settle into our holiday home). Then, the bed which…compared to my lovely firm memory foam mattress at home, seemed to tip all my weight into my derrière….again, no doubt, pooling all my blood circulation into that area and yes I had a terrible, inflamed bladder on the holiday “for no apparent reason”. By the third morning, I could hardly stand, sit or walk due to the collapse of all my ligaments in that area plus, worst of all, the feeling of massively trapped nerves that majorly messed with (as I said) bladder and bowels and sent shock waves down into my legs and feet; it was one of the most excruciating episodes I’ve ever had and took weeks and weeks to recover.
A missing link from the anxiety article and one with a huge bearing on it is the nerve pain factor that is also routinely cross-associated with hypermobility type EDS (from Wikipedia: “In some cases, people with hypermobility syndrome are subjected to hypersensitive nerves “). Yes, that’s me. I speculate that, much the same as the blood vessels that are placed under extra pressure by pooling caused by the support tissues all around them “going soft”, nerves must be similarly pressured…to extraordinary levels, all the time, given how finely woven into those body tissues they are. Add in an actual reason for those nerves to fire up and away you go…pain extraordinaire!
In my mind’s eye, I imagine it like the road infrastructure….anything that is, basically, a corridor of information such as a blood vessel or a nerve fibre is like a road in that busy road scheme. So, imagine if the road verges became terribly overgrown and disorderly, trees overhanging, bushes growing too big, barriers and road markings missing, signs obscured, bits of tree debris obstructing the roads…it would lead to breakdown, confusion, drama, congestion, all sorts of additional pressure on the traffic system. Pockets of people simply wouldn’t get home (a bit like my body fluids that seem to get stuck in certain areas of my body). That’s what my kind of EDS feels like. The thing is, this can feel a lot like inflammation but, really its not the same mechanism and so measures taken to solve inflammation (which I tried for years) won’t necessarily make a difference…its, more likely, the nerves you need to address, and the fact that the body’s structures aren’t properly doing their job.
So what keeps those “road verges” nicely trimmed, their edges fenced off and all in good order so the traffic can flow smoothly? Collagen…something I seem to lack (which, in EDS, seems to be a genetic thing) and which, same as for everyone else, I lack even more now I’ve been through menopause only, for someone with EDS or hypermobility syndrome, menopause can be an even rougher ride since we were already depleted to start with. Because collagen is what gives structure to skin and all kinds of other body tissue. It keeps it in its place and doing its job, neatly.
I suspect there is nothing very neat about EDS body tissues; they are, to a degree, amorphous and unruly and this makes them highly responsive to environmental variables. Skin in particular is well know to adapt and respond to environmental changes that most people aren’t aware of with their minds; changes in air pressure and the weather, temperature, other people being nearby, EMFs in the vicinity. Its the main criticism aimed at mobile technologies and especially 5G; the inherent health risk, which could be serious but which, at the moment, is an unknown quantity, is not that they are heat causing but that they trigger significant alterations and responses in the skin which, after all, is our biggest organ. Alert and alarm the skin 24/7 and it will start to get pretty fraught, triggering other major health issues in the longer term but, for someone like me, that is likely to happen at a much earlier stage in the game due to the knock-on effect upon other body factors, as preciously described, such as the inability of body fluids to circulate effectively or the feeling that nerves are being trapped and over-fired constantly. In a nutshell, this could be the reason for my electro-sensitivity, including my acute awareness of mobile tech when it is anywhere near me!
The knock on effects of living like this are not just heavy legs, I can see that so clearly as I now tie all these pieces together. One of the worst things that reoccurs for me goes as follows. After more than an hour on my feet, it is pretty typical for blood, as already described, to “head south” and not only pool in my legs but “other places” where gravity takes them. Awful interstitial nerve pain to my bladder, intense pain to my urethra and vulva and, by association, occasional flare-ups of the pudendal nerve, following walks or time spent upright, is one of the real kill-joys of my life. It doesn’t happen all the time (being worse around other triggers such as exposure to a high EMF load) but its fair to say it happens a lot and, often, several times a week.
Of course, this is a factor when considering taking up walking as a hobby. I already walk everyday as I have a dog but, when it came to choosing “the right” Nordic group to walk out with, I found myself having to filter them by length over and above other criteria such as location…and there weren’t all that many to be found that were less than an hour’s duration. I have to admit, the first one I sampled a couple of days ago, which was 45 mins plus warm up, was a tadge disappointing as I was, by far, the youngest and fittest (the oldest was 93, bless him…hope I’m that active in another 40 years…and one woman had Parkinson’s) so, nice as those people were, I found the pace just drearily slow and its not going to give me the work out I crave (plus it was dire for my morale), so I’m back to the drawing board on that. I suspect I will almost certainly have to pick one that is at least 90 minutes long and hope that there are benches, stop offs and a place for me to take pause, and go to the loo, at the end…as well as understanding co-walkers. Because I would rather be the least fit on a walk that pushes me a little than the one holding herself back to not outpace the rest but there are times I wish this irksome complication, re gravity, would disappear so I could be carefree about taking part in more activities.
I find I have to add here, though I talk about more recumbent positions allowing elevation of the legs beings a help-mate (my yoga teacher husband insists on lying on the floor and putting legs up against the wall, twice a day), exercise and regular movement is so important. A life spent “vegging” on the couch in the same positions for long periods is not going to be helpful here and I make myself get up, do chores, move around, run up and down stairs, prune some roses bushes, do gentle yoga and, of course, walk at least once a day as a bare minimum, however I happen to feel. I would also recommend finding some seriously good footwear that you are happy to stand up in for long periods of time. I swear by Fitflop who produce a very wide range of different styles with science-informed footbeds that are just so comfortable yet supportive.
The pooling effect isn’t always gravity driven either; it can occur where tension builds. For instance, I used to have major issues up my neck and especially into my head and still do at times (thankfully, far less often). On these occasions, I found myself baffled by distinct lumps and bumps on the surface of my head and I still get them at the times I have my most intense headaches, especially just behind my ears, like pockets of fluid. My myofascial therapist, who was instrumental in bringing this kind of head pain down several notches over the course of several years’ treatment, used to talk about bunches of engorged veins like tangled bunches of grapes. No wonder I used to feel I could die from some of those super-intense headaches at their worst; they would defy the description “migraine” as they were all encompassing and so intense I would find myself surprised to get through them (and so grateful when I did)!
Related to this, I believe, is the “mystery” blocked sinuses I get after lying down or when around EMF triggers, which has nothing whatever to do with inflammation (it doesn’t respond to anti-inflammatories), is not an allergy (little to no mucus) yet it is there every day, around the seasons. I suspect soft tissues around the nasal cavities collapse in on themselves and/or become engorged with slow moving blood when I am most stagnant (asleep) and also become more constricted when EMFs (such as when someone in proximity takes a phone call) alert the fight or flight response in my over-responsive head nerves which then fire off, only they are hard-pressed against the already constricted tissues surrounding them; no wonder I register these triggers going on around me whilst others remain oblivious! On this theme, I also wonder if the pooling effect is associated with my intense tinnitus, which has been intermittent for years (becoming much more frequent during perimenopause…as collagen levels became depleted) which then became a permanent factor, at an extremely shrill level, from the time of menopause two years ago. There are times when I wonder how I cope so well with this as it never goes away…but then what choice do I have but to try to place my attention elsewhere or go nuts!
For quickest relief of such intense nerve pain, including the interstitial variety (failing quick access to a cup of liquorice tea), I find CBD oil can deliver a pretty good respite; it will kick in and “soften” the most intense pain within a couple of minutes if held under the tongue for a good long time. It can certainly take the edge off for long enough to get me though the worst pain, which is why my life opened up so much more once I found CBD two summers ago as it gave me the confidence to at least try to go along to some things. Even a gallery can be, quite literally, a pain when your legs become heavy and, well, other matters become painfully pressing all at the same time (the first thing I do in a new location is check out the location of the loo…and then any seats I can perch on).
Of course, in the light of this, many exercises and a good many hands on therapy approaches might not be suitable for some EDS cases. I was baffled, for years, by how many things started for their well-documented positivity ended up crashing me with exhaustion and weakness or making my pain feel much worse. Massage has been particularly shaky territory, dependent on the sensitivity of the provider to my particular needs (so the kind you get offered at spas, hairdressers or at health exhibitions are something I run a mile from). Over stretching or suddenly releasing structures that have come up with their own make-shift ways of remaining “stable” (often, rigid tension locked into the body) can lead to painful rebound. One writer with EDS puts it succinctly enough for both of us:
“I went to manual therapy for years and never understood why I kept slipping right apart. I would walk out feeling so relaxed and calm and then, sometimes in the car ride home, things would start to shift out of position. Now I take a few minutes to wake up and reactivate the muscles and find the body will hold much longer”. (Ellen Lennox Smith writing about How to Successfully Use Manual Therapy with EDS; she recommends techniques for post massage recovery from Kevin Muldowney’s book, “Living Life to the Fullest with Ehlers-Danlos Syndrome“.
I can’t tell you how many times a looked-forward-to massage or therapy has resulted in what felt like massive setback and disappointment afterwards but perhaps I was missing this recovery trick.
The other, quite logical, thing this “pooling” has an effect on, and which sheds a lot of light for me, is the digestive system. These days, I can’t eat too much at one sitting and never right before standing or doing anything too exerting but at least all my years of IBS, colon issues and generalised stomach and bowel pain (going back to childhood) that never seemed to make progress via conventional routes, now make a little more sense to me. Soft innards, the pooling of fluids, the halting or faltering of the digestive conveyor belt and the potential for things to get stuck in the pockets of the stomach lining can create havoc when the cause is unknown (oh, and I cant eat many nuts or seeds; chia seeds and buckwheat, both considered such“healthy” foods, cause intense issues for me). As did the ever-worsening menstrual issues I had before menopause which, at times, became quite alarming and, again, felt like one thing was pressing on another in ways that it shouldn’t, trapping nerves and radiating pain and pressure until I dreaded those parts of my month more than at any time in all the decades beforehand and was so glad when it ended.
The umbrella thing that happens here, across all these symptoms, is that the body becomes hypervigilant for triggers because it knows what those triggers will lead to; enhanced pain, several times exaggerated due to an over-worked heart pumping blood against the pooling effect even before anything comes along to alarm it plus the pressure of soft tissues pressed against even the most minor of nerves. The net result is that, across a lifetime, you become subconsciously triggered by potential triggers themselves, in advance of anything happening, in order to pre-emept, thus potentially avoid, more pain; wouldn’t you? The extra resilience it takes to be alive in these circumstances is like the lifetime’s worth of compensation you develop for a shortfall in collagen; but, really, it should be a shared job.
One thing I have started to dose myself with, as of two weeks ago, is organic silica which is made bioavailable by a process devised by a man who made this his life’s work (he was quite the eccentric innovator-geek, just my type; his story makes the most fascinating read if you’re interested), Dr. Loïc Le Ribault, in partnership with Norbert Duffaut. I had been taking a liquid form of silica for some time but, honestly, it felt no more effective than water, however this stuff, based on what I’ve read, sounded very different (studies include “The silicon supplement ‘Monomethylsilanetriol’ is safe and increases the body pool of silicon in healthy Pre-menopausal women” – Jugdaohsingh, Hui, Anderson, Kinrade & Powell, 2013). Read more about MMST and the benefits of silica, including why it is essential for collagen formation, here (expand the final section Organic Silicon: What is it and why is it special?).
Having found out about it, initially, on the Anthony William’s “Medical Medium” website, my go-to resource when it comes to supplements, I gave it a shot (purchasing the Silicium brand version “Silicium G5 Siliplant” from Amazon) at two doses a day and, within a week I suddenly had all-new confidence sufficient to commit to two brand new activities, my Nordic walking and joining a choir, which I will be writing about soon (all astonishing boundary pushing stuff for this woman who has been a virtual recluse for ten years). Coincidence? I don’t believe anything is strictly “by accident” and, its true, I do feel suddenly more resilient and, somehow, as though I am more able to trust my body to deliver what I want it to do than I have for quite a while. Yes, there is all the “new solar cycle” influence going on that I talked about in my recent post and I do feel ready for a change of gear but, as they say, when the person is ready to receive, the teacher will just appear and maybe silica is teaching my body how to be more resilient, at just the right moment.
One thing that particularly fascinates me about silica is that helps to form zeolites in the body, which act as crystal structures and also as filters (the full extent of their purpose in the body is still not understood but I sense their importance). One of silica’s potential uses is as a way to mitigate the progression of Alzheimer’s disease through its ability to eliminate the neurotoxic aluminium, one of the causes of this disease (Chris Exley, Professor in Bioinorganic Chemistry).
This “structure plus filter” role syncs in beautifully with all I have written before about the “crystallisation” process of the body, which is an energetic concept to do with rebuilding the protective aura around yourself so that you can be that resilient person going out into the world, doing what you do, without picking up on all the negative influences and bombardments that you are subjected to by life. A lot of people these days are walking around with their auras in tatters due to high stress and a lifetime of energetic assaults upon their person from a variety of sources and it can take serious work to rebuild that protective aura, not only back to the way it was before but so that it is restructured to a whole new level applicable to the stresses and strains of modern life.
The thing is, when the body’s tissues are compromised, they also cease to act as a resilient enough structure to hold you together as appropriate for life or as the protective filter they are meant to be….to ensure that you are not utterly bombarded with so much information that your nervous system is left constantly overstimulated. Some of us, and it seems to come with the territory of EDS, are like open systems, taking in way too much sensory data all the time; it’s that elusive link between EDS, sensory processing disorder and autism. When your nerves are under constant pressure from soft tissues pressing against them, flooded with blood that pools inappropriately because of a shortfall of collagen-structures, and then they are receiving all the information our skin and deeper tissues are picking upon on from the broader environment, received raw and unfiltered, is it any wonder those nerves get frazzled and frayed?
So, whilst the article I used as my springboard led me down the right path, I would say it is about so much more than the “pooling of blood” putting the heart under additional strain; I suspect, the constant pressure on all the localised nerves of the body is also a huge part of what overwhelms a lot of people with EDS so no wonder they experience more anxiety than most. Its hard to say which came first, the highly sensitive person who also has EDS or the person with EDS who becomes the highly sensitive person but, in my mind, it is quite indisputable that there is a link and that all the extra pressure and strain of feeling and responding to so much more than is usual due to internal pressure points and then being triggered off by outside variables for which you lack the usual filters, which fire off your already over-wrought nerves, is a big part of how hard it can be to cope. This goes far above and beyond being a “physical” issue and deep into the territory of mental, emotional and energetic resilience; all of which have to be extraordinary in order to cope; we are not weaklings by any definition…quite the contrary, given the amount we have to deal with as our everyday normal. In fact, chances are you are probably one of the most resilient people you know, truth be known, so celebrate that for a moment.
However, I would say there are new solutions coming to light, such as regular use of CBD to modulate the reactions of the vagus nerve (if used for long enough, the body can start to regulate itself better, as I have found) and perhaps organic silica to help replenish collagen levels, even after menopause, helped by natural hormone methods that I have talked about before and keeping fit and mobile, not bearing too much weight, also developing mindfulness and positivity, developing the ability to take your mind off pain and go into higher states such as gratitude and excitement, using meditation etc…Plus these are optimistic times because I feel we will come to know so much more about the connection between these otherwise baffling symptoms in the years to come, with much to learn about our human and more-than-human selves in the process.
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. I do not advocate taking any of the supplements referred to and suggest that you conduct your own enquiries with medical advisors. 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.