Sometimes I get a medical letter through the post that just makes me laugh! Yesterday was one of those days…
If you have looked at my ‘What is CRPS?’ page you’ll know that CRPS is down to the autonomic nervous system (ANS) starting to behave in a faulty manner. And you’ll also know that the ANS is part of the neurological wiring in our bodies. So…. seeing a neurologist is a fantastic idea, second to seeing an autonomic specialist, right?
Here in the UK the primary doctors can’t refer patients directly to the tertiary level specialists, (which includes autonomic specialists). They can only refer to the secondary level ones, like neurologists. I wrote a post fairly recently about my need to get referred to an autonomic specialist here. Well, the update.. is that when I saw my doctor about it, (all prepared with graphs, a symptom list and my explanation of why I need to see someone-who-has-a-clue, all backed up with research papers), he surprised me by telling me that he “thinks it’s a very good idea”! Lawks!
But getting to see an autonomic specialist means that I first get referred to a neurologist, who would then be able to refer me on. Sounds like a monumental waste of time, and the neuro’s agree. That time could be spent seeing patients they can actually help, instead of filling in cursory paperwork.
Nonetheless, that’s the way the system is, so I was waiting to be informed about an impending neurology appointment.
Yesterday, I received a copy of the letter that the neurologist has sent in reply to my doctor. Here’s a quick snippet…
“It was not clear from your letter the link between the previous diagnosis of regional pain syndrome and recurrent autonomic nervous system problems.”
So…. RPS? What happened to the C? Has the neurologist even heard of CRPS? How can he not know that autonomic dysfunction is the fundamental foundation of the condition?
Even weirder…. He’s not a trainee or lower level neuro’ who could almost be forgiven for not knowing yet, he’s a…. (wait for it)…. consultant neuro’…..! ?
Have I been transported to a parallel universe where neurologists are not trained in neurological conditions? Is this possibly an entirely quantum experience?!
Well, it’s either a sci-fi moment, or it’s a regrettably familiar one. *sigh*
What he does say, however, is that my doctor should refer me to the tertiary level dude. Yes. We know. That’s why my doctor referred me to you, Neuro-Bloke. But maybe that letter could be enough? Or does the referral form have to be filled out by the neuro’ himself? I don’t know. But I shall find out.
My doctor is away at the moment and so the surgery have booked me in to see the stroppy odd one. (There’s always one, right?) So, come Friday morning, I shall trundle off down the road, clutching the letter in my hand, (and probably some research explaining the condition basics, or maybe I’ll just convert my ‘what is CRPS?’ page into a doctor ‘idiot board’? Hmmm, now there’s an idea), and find out where on earth we go from here.
It’s an interesting journey having an esoteric condition. It takes a lot of continued effort to actually get myself visible on the medical radars. Silly, really. But there you go. That’s just the way it is.
The other thing that happened as a result of my last doctor appointment was that I ended up on a brand of Selective Seretonin Reuptake Inhibitors (SSRIs). These are sadly stigmatised as a result of their more widely-known use for depression. Depression itself should not be stigmatised anyway, but unfortunately that’s the way it still is, for the most part. (If I wrote more about what I think on that subject here it’d turn into a lengthy post)! But they are actually used for a lot more than that, for example… pain control (very relevant), …and something I only found out this year, which is that they are used to help try to stabilise the ANS. Oh my goodness, reeaally relevant.
Serotonin levels vary in the brain, and the receptors in the brain pick up on this and react accordingly. It affects the behaviour of automatic processes, including heart-rate variability. And it’s the heart-rate issues that are part of why I feel so close to fainting a lot of the time. Heart-rate goes up… blood pressure drops… near-fainty experience. Although, to be fair, we don’t really know if the increase in heart-rate is causing my blood pressure to drop, or the other way round. It may well be a bit of both at different times for different reasons. The resulting lack of oxygen to the upper body probably has a fair bit to do with the worsening cognitive issues, too.
SSRIs flood the brain with seretonin, leaving the receptors with no variations in seretonin levels to react to. The ANS becomes more stable, (fingers crossed), and so the automatic processes should stop getting affected so much.
So, seeing as I most likely had weeks (or possibly months) to wait before I got to see the autonomic specialist, and it had got to the stage where my day-to-day experience was truly untenable. I needed something to be done, and I needed it asap. So my doctor ‘bullied’ me (his word) into it a bit, because I have such an aversion to getting incorrectly stigmatised as needing anti-depressants. Anyone with a chronic pain condition will be familiar with the ‘it’s all in your head’ erroneous concept. And getting wrongly labelled as needing medication for depression is the last thing we need on top of the, already appalling, lack of knowledge about our conditions anyway. He has written ‘trial medication’ on my notes and said that was enough. I think that’s too vague. It doesn’t say what it’s trial medication for…. pain control?…depression?… not many doctors will even be aware of the ANS stabilisation factor, so it needs to be there in the notes. Grrr. I want ‘trial medication to try to stabilise ANS’ on there instead, but I don’t suppose there’s much chance of getting the other stroppy odd doctor to amend it for me! (Especially if he finds out he’s being referred to as a S.O.D.)!
I’ll update you on progress in a few weeks, as the brand I have takes about 6 weeks to reach optimum effect. Thus far the summary is: unbelievably awful side effects initially, followed by apparent magic, more recently followed by decline back into spinny-headedness. So I shall wait and see before I pronounce judgement on my own personal SSRI experience.
Well the sunshine is glorious here, (unusually ) so I’m off to spend my physio’ time sorting out the freshly aired washing. Exciting, eh?!
Big hugs from me,