Hello all, I’ve been rarely posting because of the shift in my health. I took a blog-break when I moved house but when I passed out on a concrete floor back in January 2017 my whole life changed. Aaaaaall my symptoms got worse and I got a few new ones thrown in for free. Skipping the details for now because it’s not what I want to talk about. I’m following on from my last post which wrote itself when I ran out of optimism.
Like the psych’ grad I am I saw my reaction to desperate times and the devastating loss of hope and knew I needed to step back and look at a bigger picture as small changes were not going to impact anywhere near enough. The scientist in me said ‘as there is no medical support… where else can I look for medical help?’
So I was looking into alternatives and I have followed through on that. I waited before saying anything because it’s an unknown and I wanted data. I now have some, albeit early stages, which I can share with you.
For health conditions encompassing the functionality of whole systems we are often let down by the reductionist approach of mainstream Western medicine. Don’t get me wrong, it’s awesome in so many ways, but when it comes to those of us with long-standing tangled and complicated systemic dysfunctions and interactions it simply doesn’t work for the chronic aspects of our ill-health.
When complex patients present to doctors we have an overwhelming array of symptoms that don’t appear to make any coherent sense. That prompts them to question our reliability at self-reporting and to wonder if there are non-physical reasons causing us to list so many things. Even if they do believe us they are trained to triage the list of issues, pull out the most concerning one and address that. But trying to address one symptom as if it is a standalone issue doesn’t make the picture any clearer. It’s like stepping in close to a painting and looking at the left eye, the fabric, that pudgy cherub – you have to step back and take in more pieces of the picture to see what it actually is.
Occasionally we might get referred to a specialist who might know more and be able to give us more insight. In my experience this sometimes is of no help if the referral area was a bad guess, but can involve a fabulously coherent conversation for once, a practitioner who not only listens and takes what we’re saying on board but also believes us and can explain some of why this is happening to us, then they write a letter to the GP who shrugs and files the letter. The end.
The symptoms and poor quality of life continue.
And the problem here is not just that there is no treatment, it’s not even that there often is no recognition of the issues that specialists have pointed out we’re dealing with or even belief in the diagnoses the specialists have made, it’s the fact that if left unaddressed our bodies are left working harder, continuously, with no medical assistance so our fuel gets depleted and we can’t replenish it quick enough to keep up. We are spiralling but we are shelved by our GPs as if our symptoms are stable.
Most obvious in my case has been the downward spiral of never-enough-neurochemicals. I wrote about my attempts to help this here. It helped noticeably by treating the symptom but it didn’t address the underlying cause and as it continued to spiral it was no longer enough to make a difference. It’s hard to treat an underlying cause when your GP has no interest in finding out what that cause is.
I’m specifically trained in research. I’m good at this shit. I’m a scientist so I read information and take it as just that. I never do the thing GPs are afraid of patients doing when we look for information – I don’t think that I have the thing I’ve just found information on. What I do think is that I’ve just found some information that teaches me more about the biological mechanisms that are dysfunctioning in my body but I never think ‘and therefore this is me’. For that I need a medical practitioner who can suss the reason that my body is doing similar things. It can be dangerous to assume, which is why doctors tend to whinny and rear when a patient says they’ve been looking online but, in my best Bill and Ted voice: ‘it’s most tiresome’!
It’s tiresome because many expert patients are actually trying to share useful data and information with a doctor who is fundamentally opposed to taking anything the patient is saying seriously.
So, yeah. I needed someone who would take a functional approach and look at my symptoms from a systems wide perspective. I was aware of functional medicine in the US but didn’t know much about it. Was it going to be the perspective I was looking for? Were they medically trained at all or just functionally trained random peeps?
I learnt that a functional doctor is indeed a doctor, a functional nutritionist is a trained nutritionist, a functional neurologist…you get the idea. They’re Proper! Aaaaand they take the systemic approach, yeeeeeaaaaaaah!
At this point I got stuck into looking online…
It’s made its way over to Europe and more. Practitioners have their own array of specialisms which, happily, include things like autoimmune disease, chronic pain, chronic disease… This was looking more and more hopeful.
I found so many practitioners in my locality that I got to choose who I saw by the areas they had trained in to increase the chance that they would understand complex aspects of my condition.
I emailed a functional nutritionist (i.e. fully qualified nutritionist who has then additionally trained in the functional approach and specialist areas) who is just ten minutes down the road from me. As I was going to be paying for the appointment I wanted to check they were a good match beforehand so I included bullet points about me, my health and the gaping holes in my current healthcare that I needed to fill. I ended with “…if you feel that this is not a good fit for you I’d really appreciate any recommendations you have for someone you feel would be a great fit for this kind of scenario and complexity.” because who wants to pay for someone who isn’t appropriate.
We scheduled a phone call to cover what I was looking for, my health issues, what she has to offer me etc. – no cost to me
She sent me some questionnaires online, simple tick-box ones, based on the themes apparent to her from our phone conversation. – also no cost to me
I sent her my medical history as I already have it in a neat little (hah! okay, huge) table in a saved document. She’s used to this as so many complex patients have already created tables in the hope that the information will help doctors to hear what they’re saying <sigh> .
We scheduled a 1.5 hour assessment. She came to my home last November (we had the windows open for a through breeze and wore masks as I have to shield from COVID). She stayed an extra half hour because my health situation is so complex. Thank goodness she is totally used to complex health issues because it’s people like me who tend to go to see functional practitioners. The sad bit is that the reason we go to see them is because we fall through the nets of conventional medicine.
My experience of that assessment was akin to talking with a fellow patient. As she’s trained from a systemic perspective all the things I was saying made sense to her. She was unsurprised, she wasn’t confused by the diverse array of symptoms, she didn’t question the reality of what I was describing, she didn’t distrust me or think I was hysterical. She didn’t hear how knowledgeable I am and then automatically assume I’ve been self-diagnosing online. Like a fellow patient she heard everything I said, believed it, knew it to be true, cared about it, then on top of that I found that I could use all the technical medical jargon instead of explaining stuff because she knew it already from her relevant areas of training! I found I could just skip past that big chunk of any appointment with a new practitioner because I didn’t have to explain anything! We could just cut to the main issues and get on with it. My partner was there with me to help when my brain slipped away but because I could skip all the taxing explaining and just talk about what is effectively my specialist subject these days, I made it through the appointment without neuro downsliding and could keel over and recuperate afterwards. In fact he said to me afterwards that he didn’t understand most of what we were saying to each other.
What came out of that assessment was a report on my health situation from a functional and systemic perspective with recommendations for any exercises, tests, supplements etc moving forward.
Key things to note with this is that they are only recommendations – whether I follow through with any of them is entirely up to me. This is a good thing as a lot of the tests still get sent to the US so they are expensive. The report was sent to me so I can choose whether to share it with my GP or not.
The key priority for me that came out of this was that I have chronic brain inflammation. Very clearly so. Systemic inflammation is a part of CRPS, I’ve known this for a long time, but there appear to be different subtypes of CRPS (still not yet pinned down) and I am one of those patients who rarely has any visible symptoms of my primary pain condition. There are many other patients who continue to experience swelling beyond the acute stage as a significant part of their chronic pain response. The only visible signs I occasionally get are red spots on my knees warning me that I’ve done too much (and I’m too darn practiced at pacing to do that unless it’s a big occasion) or the burning red of my periodically on-fire toes. So, I figured, inflammation can’t be that bad in my body, right?
Back in 2008 I stopped studying because my brain wasn’t playing ball any more. When I pushed myself to complete my research before the qualification timed out I regularly lost my brain. Doctors had no interest in me earnestly informing them that if I use my brain I lose it. Even when I lost three months to it and could not process words or think straight all that time. I guess it’s testimony to my skills and knowledge that I got my Masters degree under those conditions. Yikes! And now, 13 years later I find out the never-ending downslide of my brain functionality that I’ve been asking for help with has been inflammation….that has never even been considered let alone addressed?!
The other clear issue was regarding my neuro-mediated immune responses to ‘normal’ environmental things. Western medicine had also found this and prescribed a repeat prescription anti-histamine. Effectively saying my brain is an eejut and here’s how to calm the stuff it tells my immune system to do. Functional medicine takes a step back and considers all the information to look for clues as to why my body is doing this. Increased intestinal permeability is a likely issue so then we look at what we could do that might help reduce permeability somewhat.
And this is why I need functional healthcare. Desperately.
The functional nutritionist gave me some diet variations to test out which helped a bit, but initially barely a drop in the ocean. The specific brain supplements however, wow! Significant improvement. Even though it’s still a very small improvement overall, it has nonetheless made a significant impact on my quality of life. Let’s face it, we’re talking many years of chronic brain inflammation and that has no easy fix. The supplements are expensive and there is no pressure to try any of the suggestions she’s made but I’m so glad I did. Once I got to the low histamine diet I realised that not only did that also help but that when reading up on the issue that it basically lists, in weirdly precise detail, all my weird and mysterious symptoms that had previously made no sense to me. Okay then. More knowledge is helpful.
Next stage: more tests. I’ve left this til now because it’s expensive. After the tests arrived we were ready to schedule but the main blood array is going to tell us more if they can see the impacts… so I’ve got to return to the impactful stuff. Boo and hiss! If I’d been up for the expense earlier I could have got them out of the way and then found the things that improve my functionality. As it is I’m gonna have to knowingly lose functionality for a while and that’s not gonna be fun. At least it will be a temporary situation but ugh!
More when there’s more.
Love and hugs, x