hEDS and HSD – “complex syndromes”

A groundbreaking new study has highlighted the multi-systemic burden of living with either hEDS or HSD along with the considerable financial and circumstantial costs associated with managing these conditions and seeking appropriate medical attention in a system that still holds an extremely outdated, shortsighted and even biased concept of how these conditions and their symptoms manifest in people's lived experiences. Here's hoping this new study paves the way towards a complete overhaul of the diagnostic process and a much more accessible "joined up" approach to symptom management.

B6 toxicity? When there’s a reasonable posibility.

Potentially toxic levels of B6 supplements adversely affecting many people's health are finally hitting the spotlight and, by coincidence, just when I am finding out that they may have been a contributing factor to some of my worst and most frightening symptoms. Sharing the journey of discovery so far.

Super syndrome: taking a unified approach to all the things

What if there is a constellation of frequently overlapping health “things” that some of us have going on, all of them connected together so deeply and intrinsically that it makes a nonsense to consider them in a piecemeal fashion? Looking into the findings of a couple of neurodivergent medical professionals who share this view I have so long held and ways we can use the information to further our self-understanding and thus empower ourselves.

Pacing 101

When was the last time I just sat there and did absolutely nothing for long-ish phases of time? When did I, with hands on knees, just sit and watch the birds out of the window and let my mind become blank for more than just five minutes at a time? In fact, when do I ever allow myself to be still, without my mind flooding with a dozen new and ever-more more jet propelled urges to do half a dozen other things the moment I allow myself to get going again…and then, once I get going, becoming so hyperfocused I forget to get back to my pacing? Every time I allow myself a short period of activity, I risk becoming embroiled again. It’s hard…probably one of the hardest things (if not the hardest) I’ve ever attempted but the few times I managed to really master pacing, last week I began to feel noticeable benefits that I find hard to explain in words but I felt them clearly enough. There were distinct shifts in me that I hadn’t experienced for a long time, some of them for years, which manifested slowly and subtly like ghosts of a new experience stood on the periphery, contrasting starkly with all the stuck-feelings of chronicness. The best I can explain is that my nervous system felt less compressed or jangly, my body felt less hypertonic and my endorphins felt increased, in short bursts, that almost felt like excitement or waves of appreciation and something bordering on joyfulness. I can vaguely recall feeling like that much more often, even perhaps frequently, back in the good old days, back before ME/CFS took hold in such a way that it has become a whole other way of life but I think it had been a very long time since I had been there, even for a moment, until I started properly pacing last week and now I hold out for experiencing even more of this. It turns out pacing is not this passive thing, the "absence of activity" that I feared so much but this incredibly proactive thing that lets other good things happen.

Driven by positivity: an alternate spin on neurodiversity

Considering a hunger for positive feedback, recognition and praise as a main driver for a lot of people with ADHD, leading to a euphoric state on the rare times we ever receive it. Such positive feedback can turn us into a "whirling dervish" of positive energy and enable us to turn all that apparently erratic energy around and apply it to striving, thriving and making good things happen.

Cervical instability at the core of fibromyalgia?

Exploring why it may be worth considering cervical instability as a root cause of fibromyalgia with some real food for thought on how the wide-ranging symptoms of this one single, often hard to notice, factor can really start to add up.

A quest to know myself better through synesthesia

I’m beginning to sense that in synesthesia lies the key of so many aspects of my long running chronic pain. If I could only gain a better viewpoint of what actually happens to me when I sense things, I suspect I might be able to catch a glimpse (like some sideways-on reflection of myself reflected back at me in a shop window) of some of the causative aspects of pain where no other provocation for pain seems to exist. This feels like a worthwhile line of enquiry for anyone who is neurodivergent and weary of how unusual levels of pain never seems to abate, especially as I think it is possible to have one of the less talked-about versions of synesthesia and not even realise it since it is your version of normal.

Synesthesia or salience: autism and environmental sensitivity

In the case of those of us most sensitive to environmental factors, is "weather (or whatever it is) salience" a more apt term to describe a higher degree of awareness that leaves other people wondering what on earth we are talking about and does synaesthesia sometimes get recruited by our neurodiverse brains as a means of extending the basic sensory tools so that we get to gather far more "data" from our environment in an attempt to better "systemise" our experience of the otherwise random-seeming world we live in?

Fibromyalgia in review

There is no one approach to fibromyalgia, it has to be a multi-system approach but this recap of what I know, with the help of a webinar I watched yesterday, has been a really big help in summarising all the key points and gaining some real clarity. Also for checking in with any approaches that need a little boosting and I also hope it might help anyone else who could do with a review.