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,
Mate, I reckon you should definitely convert your “What is CRPS” page into a doctor “idiot board” – paste it onto a nice bit of hardboard, then you can use it to whack him on the head!
A long wooden handle would be an optional extra…
Good luck! Xx
If you’re still spinny in a couple weeks, consider dialiing back your dose… Some of us are highly sensitive to those and only need tiny doses for best effect.
SSRIs are part of the gold-standard of treatment here in the “we know best” US, because their action on the nerves is so obvious. I mean, serotonin? Hell-oo? Especially at the spinal root, where so much pain is mediated? Well, anyway.
Who on Earth would think you’d need to take your “CRPS 101” page in to a neuro-freaking-ologist? I can hardly contain myself. I think Rory is onto something… especially the bit about the long wooden handle. Retractable, so it’s less cumbersome to carry. mwahahahahahahaaaa
I’ll draft in some tool or other from the shed, then! 😉 And retractable is such a practical idea… it could look like a magician’s trick as I pull an impossibly long stick out of my handbag, hehe!
Surprisingly I’m already on a mere 20mg per day, After the side effects had stopped being so dreadful I noticed improvements in issues as minor as my nails no longer breaking all the time (breakages were a recent development) and my hair being not as strawlike as it had become of late. But importantly… gastro’ improvements, less continuous faintyness and some types of pains dropped in level, too, It seemed like amazing magic for a while, there! I wondered if getting out at the weekend was perhaps an initiator of the spinny head, but I just don’t know. I shall see how it goes over the next few days and I’ll talk to the stroppy-odd-doc’ about it! hehe
If it turns out that the seretonin fix really is that amazing then I’m sold! xx
Good luck on Friday, and I hope S.O.D. does read this. In an ideal world, stroppiness and healthcare shouldn’t go hand in hand.
Thanks Ka Hang, yep S.O.D. is a funny old sausage! The receptionists booked me in with him once because my doctor’s diary wasn’t available, and S.O.D. had a right go at me and treated me really strangely and unprofessionally. I was very polite and smiled my way though it. Hopefully he was just having a bad day, but if he does it again I will be speaking up this time! 😉
Love your posts, by the way, x
What a coincidence I read about doctors and patients- http://well.blogs.nytimes.com/2012/05/31/afraid-to-speak-up-at-the-doctors-office.
Thanks for the feedback too, Elle- I’m glad you enjoy my blog as much as I do yours 😎
Superb link, thank-you 😀 I shall post this link to the Fbk page for others to see as I so often hear fellow patients say that they don’t want to bother their doctors, even when they are experiencing high pain levels, severe side effects, worsening condition, or confusion about how to work a technical piece of medical kit. We definitely need people to feel more empowered to discuss their health options with their doctors, it’s a perfectly acceptable and sensible approach, after all it’s our bodies that we’re discussing with the doctors. Thanks hon’, xx
I am going throughh exactly the same thing. My GP says my Consultant should make the Tertiary level referal but my Consultant. Pain Spec says it should be my GP. Round and round we go….
It’s such a merry-go-round, isn’t it! I now know that if the secondary doctor will at least put it in writing with a name of a specific tertiary doc recommended… under those circumstances the primary doc can refer us. Can your consultant save himself some time in the swings-and-roundabouts game by writing it in a letter to your GP? I hope they sort it out soon, it’s horrid that you’re hanging on while they needlessly pass the buck back and forth. Big hug hon’, xx