Sharing some thoughts or, perhaps, background to my blog and my particular healing path today which is, I have to stress, personal opinion and not advocacy of any kind. Remember, I am not a doctor or medical specialist, I am “just a person” like anyone else, looking for clues and working my way along a convoluted healing path. First, a short story…
I have a highly intelligent dog who, when a ball was ever thrown for him (we no longer try), learned very quickly to just stand there waiting for me to hand the ball to him without all the palarva of running round. Likewise, if another dog was giving him the chase, he would wait hidden behind a tree until that dog inevitably circled back again and then jump out on them, “boo”. He always got the dog; we handed him the ball. He really didn’t see the point in all the hardship and the circling, the exertion and the missed chances, with tired legs and dizzy vision. He went straight to the point, waiting out that inevitable conclusion in the most likely place for it to appear.
It occurred to me that I have been a lot like that in my health journey because I don’t follow the most well-trodden routes of seeking doctor advice and diagnosis. My mixed bag of health issues are quirky in the extreme, at least to most GPs in the UK (and especially 15+ years ago when they first started appearing…and some of my earlier investigations were as far back as 25 years ago, when I was repeatedly misdiagnoses antibiotics and cortisol injections, which only made things much worse).
When I keep my ear to the ground, and I do, via articles, research, forums, newsletters and monthlies on the areas of health that are relevant to me (given, yes, I have self-diagnosed a well-fitting bundle of health issues such as Fibromyalgia, Chronic Fatigue Syndrome, Hypermobility EDS, Mast Cell Activation Syndrome (MCAS)…these are well documented as overlappers, I find myself in all the literature and it doesn’t take rocket science these days to self-identify with conditions that are so well documented on the internet) I have kept a close eye on the outcomes for others who have pursued the diagnostic route.
Those outcomes tend to be somewhat more coherent across the Atlantic but, here, they are harder to pursue and involve much more zig-zagging between specialists who likely have a blind spot to your particular overlapping issues. Each specialist holds to his or her own area so blinkeredly that I have heard story after story of people passed to one doctor who misses the other glaring factor in their health until, finally, they are then passed to the specialist to deal with that factor only to be completely messed up or misdiagnosed as to the cause regarding some other factor because those other parts of the picture weren’t taken into account; round and around. I came across this in an article just the other day:
“Since ME/CFS doesn’t fit into a recognized medical speciality like rheumatology, most people with ME/CFS probably get diagnosed by general practitioners who don’t have the background to understand or treat the disorder. People with Fibromyalgia with POTS see rheumatologists who don’t have a clue about the autonomic nervous system. After they get past the psychologists for anxiety disorder, most POTS patients probably next see cardiologists, most of whom know little about POTS”. (Taken from Cort Johnson’s recent post “From Chronic Fatigue Syndrome to Fibromyalgia To POTS To Success: One Woman’s Journey Through the Medical Profession” in which he relays one woman’s lengthy and frustrating experiences of being passed from pillar to post).
In other words, there is hardly any joined up thinking between disciplines and studies linking these overlaps, anecdotally common though that are, remain in the early stages of breakthrough. I experienced this when I went to see a Fibromyalgia consultant who completely missed my hypermobility trait until I explained it to him and then simply shrugged it off as something outside of his expertise whilst continuing to advocate drugs I would be intolerant to and impact physio approaches designed for someone without the EDS.
So as I said, all too many times I read articles or forum posts about people taken along a long and winding route of being passed from consultant to consultant, lots of red herrings, blind allies, drugs with side effects that make them much worse, lots of energy expenditure and high-stress pleading with doctors who think they “know best” when their original intuition turns out to be right. None of this feels right for me. Worse, none of this is even viable for me given doctors and clinical environments are one of my biggest trigger points, not to mention I am intolerant to most medications (read me the most adverse outcomes in the small print and those are likely my outcomes from taking them as it has happened unfailingly for years – it is widely documented that people with EDS and MCAS often have adverse reactions to medications). I am also highly sensitive to EMFs so clinical environments, not to mention MRI scans, would be a very high price to pay in that regard, almost guaranteeing me a major flare-up as soon as I walk through the door. Even the Fibromyalgia consultant stated, straight out, that it was too risky to put me in an MRI scanner unless something involving brain lesions, such as MS, was suspected, which it wasn’t. Stress, I know all too well, is to be avoided at all costs and I find these environments blow my top off with stress just from the environmental exposures to EMFs, chemical cleaners and other people’s anxiety which, as an emapth, I soak up like a sponge. One brief trip to the dentist clinic can floor me for two weeks. Yes, its fair to say, hospitals make me ill!
The cascade of mast cell activation that would be set in motion if I were to be passed along this route, triggering off worsened symptoms left and right, would mean I would never see wood for trees again because the trajectory of symptomatic confusion would only take me further and further away from clarity. One gets the impression that, in a lot of these cases, people are simply left to patch themselves up with more and more complicated remedies to deal with symptoms that may have come from the medications (not the illness itself) in the first place; like trying to stick all their fingers in a dam to hold the deluge at bay (until they run out of fingers…). I dont want a life like that!
So, my decision (not one I am advcocating, of course; this is my own personal decision for which I take full responsibility) is that I am doing this alone, without the meds, without all the prods and poking, the dismissive treatment, the doctor knows best confrontations and the feeling of being passed around like a parcel that has nothing to do with my life. Joy and hope are always my best medicine and I guard them fiercely, along with my right to choose say-so over my own body and to use an equal mixture of intuition with intelligence as my guide. In short, we have to ask what price to our quality of life and sometimes the answer isn’t the most linear or logical but the more holistic route, taking into account how we spend our days, the quality of our sleep, the degree of absence of the kind of high tension caused by waiting around for appointments or outcomes whilst just hoping someone else will take us seriously when we sit down to face them. Rather, we can offer that degree of validation to ourselves (we already know what we are going through!) and be done with it.
Of course, if there was a particular outcome I was in need of such a truly miracle drug that could make my quality of life so much better without worsening side-effects then I would at least consider it, once its full repercussions were well documented (I am no guinea pig). Really, I am much more interested in the route of pursuing medical marijuana, since I find CBD so helpful, but we are some way from that being available to people like me in the UK. As far as I can tell, there really isn’t any give at all this area at present so, like the dog behind the tree, I sit and wait. I have always been the maverick and the independent thinker and this is what I choose, for better or worse, but I will not shy away from taking this kind of responsibility for myself rather than signing my quality of life over to others to dictate. This isn’t a lack of respect for doctors or science and I am in awe of the kind of headway that is being made in some quarters, including the life-saving potential of surgical intervention. Oh and, of course, if I thought there was any likelihood that there is a serious condition being missed by not pursuing an opinion, I would be there; but I don’t because my symptoms all add up to the very conditions I have so thoroughly self-researched on the internet.
In any case, testing for fibromyalgis is notoriously difficult, still so subjective, so one specialist might say yes, another no but what about what I know to be true? My fibromyalgia was, by the way, confirmed last year by a specialist consultant but I was really wanting him to address the issues I was having related to my hypermobility having become suddenly much worse, which he shrugged off as he knew nothing about that territory. Same grey areas with hypermobile EDS which is the one, out of all the various manifestations of EDS that, as yet, has no gene profile so it is all down to speculation and assessment but, even if I had that gene profile on the table, what would it really tell me unless I could reverse it (we are miles from that)? So in my case, in the particular area of health issues I occupy, I feel there is merit in holding back somewhat until a concrete reason for seeking attention and intervention appears on the horizon, especially if drugs are not able to either reverse the condition or offer the life-enhancing answer; surely these are the only points I need clear in my sights, the rest just tells me what I already know and gives me a piece of paper stating it (eventually).
So what appears when you sit behind that tree, watching and waiting for where people like me inevitably get to? Well, people that go through the system inevitably end up on the kind of pain relief meds I would refuse and already have (I am familiar with the list) due to the adverse side effects I don’t want to engage with, and then they are sent home to do their own self-management as best they can, which largely relies on lifestyle adaptations and considerations, incorporating appropriate daily movement and diet etc., that I am already more than party to, including seeking morale boosting support from their peers within the health community. Well, I can get my support from various forums I belong to, plus newsletters I subscribe to, also updates on breaking science from those same sources (plus I always keep my ear to the ground). Of course, some people don’t take you seriously unless you can say you have been handed your diagnosis by a doctor, they have been taught to despise the kind of independent intelligence and curiosity that leads to self-research and diagnosis if you have no medical degree (though this is getting better as more and more people turn to it themselves) and taking certain meds, knowing what the downsides of those feels like, the very fact of having been in the chase itself, has almost become a badge of honour in some quarters, like a club you get to join but I am, as ever, prepared to be the odd one out. Self-diagnosis and having the confidence manage your own healing protocols have come a long way in the world since I began this long and arduous trek, pre the days of the internet; one could almost say they are coming of age.
If there is one area I feel I could use some help its that of sourcing some EDS-appropriate physiotherapy but, until this pandemic is over, I am not able to progress this and then hope that I can do so without referral. I guess I will cross that bridge when I get to it. I am also keeping a close eye on a Functional Naturopath and Functional Genetic Analyst (added to my Health Resources page) that I found online who specialises in mast cell activation disorder and may pursue a series of consultations with her at some point (diet is one main area where you can play with the genetic outcome), although her freely available advice is already more than user-friendly so I am starting from there. For now, I will continue with my natural approaches and this not-as-lonely-as-it-used-to-be path (thanks to the internet) just as I am. I guess you could say, I prefer to cut to the chase.
Entirely my choice. Not saying it should be yours.
This blog, it’s content and any material linked to it are presented for autobiographical, anecdotal purposes only. They are not meant as advice. 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 or following any of the choices or steps outlined 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.