Trauma in a faulty nervous system

Trauma impacts on us at the time (by initiating our fight or flight survival responses) and over time (impacting on how that system responds to certain stimuli). When in a state of fight or flight one part of the nervous system goes into overdrive to do practical things like getting muscles oxygenated for running and dodging. It doesn’t need our body to worry about mundane things like digestion at the time, so the other part of the nervous system which calms things down doesn’t get stimulated in fight or flight scenarios.

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That calming part of the nervous system is strongly associated with the vagus nerve. Patients with dysautonomia have faulty nervous systems and so they often have a variety of misbehaving automatic body processes that all stem from the faulty messages the system sends to our brain. Our brain responds appropriately, but, as the messages were wrong in the first place, the brain’s resulting instructions are inappropriate and often make matters worse. This is an ongoing, circular issue.

One aspect of having a faulty nervous system is that the fight or flight tends to not work properly. The tendency is for sympathetic (activating) nervous responses to be overdone and parasympathetic (calming) responses to be underdone. As a result, fight or flight is a pretty common experience for many dysautonomiacs.

A fellow blogger over at ‘Healing from the freeze’ wrote a post back in 2011 which I’ve belatedly come across. Tracy Andrews is an acupuncturist and was looking at the involvement of the vagus nerve in trauma, namely that it kicks in to help us cope by kinda distancing us from the pain, and that mindfulness is therefore very difficult in trauma patients. She also points out that this is important on a physical plane, not just an emotional one, as the experience of trauma affecting the vagus nerve means that we feel a visceral response (a ‘gut reaction’) to trauma. That physical pain and discomfort is now recognised as part of the trauma experience. If this sounds weird just think of how normal it seems to us when we see a TV character’s response to something horrific is often to feel sick or even to vomit. It’s our innards functionality getting disrupted by the nervous system that causes this kind of physical response.

My reason for this post is to inform both mainstream and ‘alternative’ practitioners of the Dysautonomiacs’ experience to trauma as being very different from that understood as the norm. We need professionals to work from a base of understanding that our trauma response is very different from what’s expected, and that any trauma treatments aimed at reducing vagus response and removing the traditional blanket of numbness is actually the exact opposite of what is needed in our case.

Our vagus nerve doesn’t work properly! We regularly get fight or flight responses over the most stupidly small things, but the impact of that is not fleeting or brought under control with ease or automaticity (coz we don’t really ‘do’ automatic processes, or at least we tend to have a diverse array of faulty autonomic responses).

When we experience trauma, we feel all the same gut wrenching pain and anguish that anyone else does, but we don’t get that numbing sensation that often initially shows up after a shocking event. We simply continue in the same high level of distress and cannot find a way to bring that level down.

I wasn’t always a dyautonomiac. I have experienced the vagus calming impact. I know my nervous system is a sandwich or two short of a picnic these days, but I’d never consciously applied that knowledge fully to my two year long stint of living in permanent gut-twisting distress. I even described it as like being ripped apart from the inside out and as being physically painful and yet never fully made the link until reading Tracy’s post. It was non-stop 24-7 and I struggled to function and to make sense of things around me. I have always looked at those years as being ‘nervous system stoopid’ and though I acknowledged that it was a physically painful experience and that science backs up that trauma causes physical pain, I had not consciously tied the latter in with the vagus nerve specifically. Not surprising really as when in fight or flight, higher brain functions don’t get supported any more. Brain-computer says “no”! And as I experience a lot of fight or flight effects (it’s a continuous management issue) I don’t get much Brain Time these days.

making-tea-with-near-fainting

A specialist confirmed that my fight or flight switch was stuck in the ‘on’ position and had been for a long time. Let’s just drift over the fact that scientists reckon that the fight or flight response is, yes, useful, but damaging if ‘on’ for more than two minutes straight. My several months of whackadoodle respiratory processes seemed like nothing after the two years of not knowing what was going on when my Mum disowned me. Those two years are what are foremost in my mind as I write here about the physical pain of trauma. No trauma I’ve ever experienced was like that and I was in a perpetual state of fight or flight that made it very hard to get through from one second to the next. Many months of being ‘on’, followed by years of being ‘on’, permanently having to monitor and manage my symptoms because my default is now for my fight or flight to be, yes, switched on. You see how far removed we dysautonomiacs are from the trauma ‘norm’?

Interestingly, the one thing I found that didn’t help exactly but kinda almost got me through each second at a time, was what I now realise was my own attempt at the numbing/blanket effect that my nervous system wasn’t giving me. I’ve written about this tool before but not from a visceral perspective. It didn’t come anywhere near being numbing in any shape or form but it helped me to survive through each moment. That thing was to play an immersive console game, when I’d never been a gamer before. I mean I’d played Sims occasionally, but not what I thought of as ‘proper’ gaming, heh. It was a couple of Bethesda open world games (Oblivion and Fallout 3 as it happens) that were non-restrictive – you can go anywhere, do anything. There is a central storyline, but you do it whenever you feel like it, leaving you to act on whatever is most effectively stuffing your brain with ‘other’ at the time.

Understandably my system is mega-faulty after that incredibly prolonged period of flooding my brain with chemicals shouting ‘Alert! Distress! Danger!’. It was going downhill at the time; hence the misunderstandings and miscommunications, but that one event pushed everything skyhigh. I now have to take neuro’ meds to help stabilise my autonomic nervous system. They don’t magic the malfunctions away, but they do help to reduce the extent of their impact significantly. I still have to be very careful about how I manage my brain and body when I feel the responses going doolally (which can be multiple times a day).

The key for practitioners (and self-advocating patients) out there is to understand that this difference in neural response post trauma is significant and treatment needs to be appropriate to each patient’s wiring. The wiring in dysautonomiacs is wonky so the treatment has to be on a proportional incline!

hoofbeats2

This is why rare disease (and rarely known disease) patients use the zebra pattern when awareness raising

 

If you’re a fellow patient experiencing fight or flight issues then definitely talk with your doctor about it. If they don’t realise that the nervous system is affected as part of your condition then have a look through my FAQ of links and research in case there’s something there you can print off to help them understand. Please note: doctors are trained to learn from science so general media articles won’t be of use to them, so go for the research papers when you can, medical practitioners are totally used to working with those.

My fellow blogger, Isy Aweigh (over at ‘Living anyway: Life, CRPS and Everything‘), kindly checked this post for me before publication coz, as it turns out, writing about the fight or flight response, yes, you’ve guessed it… sets off my fight or flight response. My thanks to Isy for making sure this post made sense (and for adding a truckload of commas to slow me dowwwwwn)!

Showing the post to a fellow patient before publication meant that we found we both have similar experiences with trying to calm our nervous system down. We both find the type of mindfulness that focuses on the ‘physical within’ pretty useless. Our innards don’t play well with others and it seems that includes our conscious attempts to calm them so we have to take a more indirect approach. Our approaches are specific to us as individuals but there is a lot of overlap because we utilise what happens to calm us, rather than focusing on calming. For me I pretty much go through them in this order:

  • I can use breathing techniques but it has to be with a QiGong (Chi Gong) focus for me. I can’t focus on the breathing itself, it has to be on pushing my stomach out to draw my diaphragm down. I imagine I’m drawing energy in with the breath and down to my stomach, it gets drawn down through my body to the front of my stomach then down and round to come back up towards the back of my body and leave through my mouth again. Keeping whatever energy my body needs and giving the rest back to the universe. Pretty calming no? Well, it helps me a darn sight more than focusing on my breathing does because I need to be calmed by what I’m doing, not to try and focus on calming what doesn’t like to be calmed. Focusing on what’s wrong and trying to correct it doesn’t work for me, I have to come at it sideways.
  • I think of Magic Dude which both lifts and calms me with love. I realise that I’m currently pretty lucky to have someone like him in my life, but if he wasn’t I would do the same thing with my most precious of besties.
  • I think of my eventual art area, in our currently partly renovated home, and it makes me smile. It is going to enable a return to a great joy of mine.
  • Doing some Tai Chi would be my best option for sure. It wins by faaaaaar! When Tai Chi-ing my mind is occupied with that alone. It is a moving meditation and supremely calming for me. My pain condition means that for most of each day that simply isn’t an option for me, so…
  • I run through Tai Chi moves in my head. Research has shown that clearly imagining movements in our heads actually strengthens the neuronal pathways that we would use if we were actually doing the moves physically. So it’s not surprising that thinking through the moves is almost as calming as performing the moves with our entire body.

The reason they’re in this unexpected order is because fight or flight wobblers can occur anywhere. We need simple on-the-spot options that we can do without drawing attention to ourselves. It’s not helpful having to prioritise answering questions over health management, so subtle is handy but also much needed when activity is restricted. So Jedi mind tricks are key! 😉 But yes, I will break into Tai Chi anywhere if I need to or if I simply feel like practising! I’ve been known to Tai Chi in supermarkets, D.I.Y. stores, car-parks, you name it! And people tend to not interrupt when you’re being that weird! Hehe

But that’s just my own array of tools. I wonder how much we all overlap with the approaches we’ve developed which work for each of us?

xx

CRPS and flu vaccinations

Please note: this article, and the meta-research mentioned within it,
is only discussing flu vaccines

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The question of flu vaccinations in particular has come up recently. This is a very individual decision based on our very individual bodies. Current CRPS research is looking at the subtypes of CRPS, so sweeping statements about all CRPSers are inappropriate. For example, some people experience CRPS spread whilst others do not, some people have other immune issues and/or autonomic dysfunction whilst others either do not or experience few symptoms of these. I could go on, but you get the point – we are not the same simply because we have the same condition.

Everything needs to be considered for our individual body, with our particular array of conditions and symptoms. What is okay for one patient may be problematic for another.

This means that sweeping statements are something to be very cynical about. If someone says all CRPS patients should get the flu vaccine there will be some patients for whom it’s not appropriate. Similarly, if someone says that all patients should avoid the flu vaccine then there are patients who would have benefited who are consequently put at risk. So the first rule of thumb is to steer clear of the sweeping statements.

What you need is facts – so that you can consider your own personal situation in light of the information. You need to be able to make an informed decision.

The difficulty when looking for facts is that most of what we find online is influenced by opinion and to sift through the science you’d need to trawl through many medical journals, (preferably the smaller ones as the big journals tend to publish more of the research funded by pharmaceutical companies which means lots of bias, and don’t forget what I’ve said before about negative data not getting published, too). But helpfully (or unhelpfully depending on how you look at it!) an independent systematic review found that there is no really clear evidence for or against flu vaccines (Jefferson et al, meta-analysis, 2010).

So to make a decision about whether we should have the flu vaccine or not then we should focus on how it works and how that might function inside our particular body.

file0001208028901(picture source)

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A bit about vaccines:

A  vaccine is merely a weakened or dead version of the virus. The flu vaccine has always been a dead version but I have heard from a pharmacist that very recently this has changed as some are weakened rather than dead – so if your body needs you to be sure which your doctor is offering just ask in advance.

They work because our immune system learns from the experience of the weakened or dead version so that it is prepared if we are later subjected to the same strain of the actual virus itself.

The manufacture of vaccines for seasonal illnesses like flu has to begin ahead of time to enable the manufacture of enough vaccine. So the experts have to predict which strains of the virus are going to be the most problematic several months in advance. This of course means that there is room for error, even the experts can’t always predict the next haute couture in flu viruses that far in advance. So there can be strains of the virus around which the vaccines don’t cover.

Ultimately a vaccine allows the human body to have a swifter and harsher response to the strain(s) of virus it protects against. Which is good for us in general terms because immune issues are part of having CRPS (and for one subtype of CRPS may be the foundational factor), but as general terms is not enough when it comes to chronic illness – always look at your own personal health issues to make a decision appropriate to you and your body.

 

One common area of discussion among patients results from experiences of becoming ill after having a vaccination. There are several ways you can become ill after vaccination:

– The vaccine reduces your chances of catching the strain(s) of flu in the vaccine. So the potential for illness if you are subjected to these strains at some point is still there depending on various factors (including the state of your individual immune system).

– It is still possible to catch a different strain of the flu virus which wasn’t included in the vaccine, especially as your immune system will be busy dealing with the vaccine at the time.

Many people think the vaccine itself can cause illness which is not the case as the flu virus in the vaccine is most commonly dead. However, as I mentioned above, there are some flu vaccines which now involve weakened versions of the virus and I feel I should include a caveat here simply because the human body is a complex critter and I have had enough encounters with patients with rare diseases and immune issues to know never to say never! But yes, really, if you got ill after having a dead vaccine the greatest likelihood is that your immune system was rather busy and that you caught a different strain that the vaccine didn’t cover.

Also bear in mind that the vaccination can cause some symptoms reminiscent of the illness for a day or two as the immune system learns about it inside your body.

Plus those of us with chronic illness continuously hanging onto bearable health by our fingertips can become more susceptible to illness during this period.

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Each year new strains of the virus have developed, so a new vaccine for the new strains of flu is created to help protect our bodies against them. This is why we are called in to our doctors’ surgery for a vaccine each autumn.

Sick person

(picture source)

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The vaccine positive: Reduced chances of getting flu. The key word is ‘reduced’, it’s pretty vague because different research has come up with different statistics on how well the vaccine works.

There are various aspects to this, we each have different bodies with our own immune system, does our body tackle this stuff well or not? Is this likely to work for us as an individual? Have the experts’ educated guesses been as good as usual about which strains are going to be the big problems this coming winter? We have to weigh up both sides and decide what’s best for each of us.

Personal vaccine positives: vary for each of us because getting or not getting flu is just the beginning in our chronic illness vaccine considerations. Being what we CRPSers tend to playfully call ‘normal ill’ means that our pain management regime is severely disrupted. We cannot maintain our usual paced daily activity which means that a pain flare is pretty much inevitable. What that means will vary for each of us, and even more so once we start taking our other related conditions (comorbidities) into account because being ill often has a detrimental affect on those, too. So what would be a week of flu for an otherwise healthy person becomes weeks or months of extreme hideousness for us chronically ill folks as we a) work through the flu itself and then b) work through the longer task of trying to get our health back to the level it was before we got ‘normal ill’ on top of our chronically ill which screwed up our delicate balance needed to manage our health as best we can. (Grr)!

We each have to weigh up potential injection-event pros and repercussive cons against the potential mega-flare that will result from having to get through a bout of flu on top of everything else. CRPS patients of any age fall into the ‘at risk’ from flu category courtesy of our compromised immune systems alone, before we even get started ticking off other stuff on the ‘at risk’ list and yet some patients out there could have good reasons to avoid the injection event. Sweeping statements do not apply.

For me personally I avoided the flu vaccine for years and every year I got ill and spent pretty much the entire winter trying to claw my way back to some semblance of functionality again. So I finally tried it (back in 2010) to see how it worked for me, and in my case it was a positive experience. Actually it was a reeaally positive experience because I’ve not had the flu since. Wowsers! Now that I know that, it’s a no-brainer for me! I cannot face the mega-flare that results from me getting flu. I have been through that delightful experience many times and each time it took me weeks, and sometimes months, to get back on track. Horrific doesn’t really cover it. So having tried both sides I now know that I personally would much rather have the vaccine to give me a greater chance of dodging the flu and instead incur a mere few days of potential flu-like symptoms as my body gets trained in kicking the butt of this years virus strain. I’ve had completely transformed winters since I started having the vaccine each autumn. But that’s me personally. You have a different body, a different set of symptoms, a different set of conditions. What works for me or for anyone else is irrelevant, you need to think about what works for you.

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So when people warn CRPSers against vaccinations what are they referring to?

Some of us have bodies which do not favour even such small invasive procedures as one needle. Good general advice is to to have the flu shot in an area unaffected by CRPS. If you are still unsure then discuss the potential difference of using a smaller children’s (paediatric) needle and whether that may be worth a try.

Perfectly healthy people can experience soreness in the area of the injection site so the potential for soreness is there anyway, and possibly amplified pain if our autonomic nervous system is playing up about it.

Elle and the Auto Gnome, notebook

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There are also some basic things to take into account:

If you have any allergies then these should be discussed with your medical team beforehand to assess how appropriate it is for you. There is also a standard list of questions that the nurse should run through with you beforehand, particularly ‘are you allergic to eggs?’.

If you’ve had a reaction to the flu vaccine in the past it is likely you will be advised not to have it again.

If you have an extremely poor immune system you will also need to discuss it with your medical team as you may be advised against the flu vaccine

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Each of us has a good idea about what our own bodies can handle. We know ourselves best. We live inside these bodies of ours and we know what is likely to set off a flare, and if so how bad it could be, and whether we are prepared to go through with that. For me personally, vaccination is well worth the positive outcome I experience from it, but we each have to make our own decisions.

x

One of those weirdly surreal days

How do you react to being told that one of the UK’s top Tai Chi teams want you to join them *and* to compete as part of the team at the European Tai Chi Championships in Latvia in only a couple of months time?

I mean really? Whaaa?

My first emotion was one of excitement, but the shock soon set in! By the time I was halfway home my facial muscles had gone all slack, my eyes were wide in shocked disbelief and my mouth was gaping, I must have been a weird sight!

So, in my case the internal reaction seems to be.. ‘Whaa? Wooow! Really? Woah! I haven’t got my passport sorted yet!’

Quickly followed by… ‘I’ll need to take my wheelchair with me. I need the rest of the team to get their head round the reality of a Tai Chi competitor also needing a wheelchair some of the time even though they look ‘normal’ when they’re not using it. I hope they can get me a seat on the plane with plenty of leg-space. I wonder if the aeroplane people will lose the arm rests, maybe I should bungee them onto the wheelchair before they load it….’ etc etc. During which my fight or flight kicked in, because it does that over even the slightest raise in heart-rate (My fight-or-flight: “Your heart-rate has fractionally increased! Oh no, we’re all going to diiiieeeee”), and before I even reached home my autonomic flibbles meant that I also became rather nauseous. So I figured it was best to simply concentrate on careful breathing to calm my silly inner-wiring.

But the day was even more surreal than that, so instead of coming home and variously grinning and pondering my way through the afternoon, I instead had to come home and type up a potted medical history for the cardiologist who I was seeing that very afternoon.

Off to the hospital. Quick ECG as usual. Which was all fine and dandy, as usual.

The reason I’d been referred back to the cardio’s again was because my GP gave me a 24 hour ECG (called a ‘holter’ in some countries) and instead of my wiring saving the heart flippity-flappities for when I’m not all wired up and Borg-like it actually misbehaved at a time when it would be registered. But… instead of my heart going flippity-flappity it ‘paused’. For 46 seconds!

*sigh* Always something new, eh?! Ah well.

Anyway, the outcome from the appointment was that we really don’t know what my wiring is diddly-doing so I’m going to get called in to get set up with a 7-day ambulatory ECG sometime. Fortunately it should be before the European Tai Chi Championships. Yes, I checked! 😉

Just because the day is so darn weird anyway, why not do something out of the ordinary to be in-keeping with the theme?…

On my way out of the hospital I wandered past a clothes shop with ‘SALE’ in large, friendly letters ( 😉 ) and in the window was a dress that caught my eye. So I went in, tried it on, and blummin’ bought myself one. Yes, you read that right, I actually bought myself something that wasn’t ‘necessary’! It wasn’t supplements, or med’s, or compression stockings, it wasn’t even a Tai Chi seminar for extra physio’, it was a dress that I bought for myself simply because it’s pretty. Well it’s pretty *and* purple *and* paisley, so how could I resist?
dress from hospital
Though perhaps it says a lot about my life that I bought it inside a hospital! Hehe
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So, I’d been out of the house twice already that day – once to Tai Chi class (and the shocking news) and once to the hospital. But Tuesdays are called Totally Tubular Tuesdays in this house because I have two physio’ classes that day, yikes! I wasn’t sure if I’d make it to adaptive Kung Fu as well, but Wednesdays are always my rest and recovery day after my tough Tuesdays so yeah, I went anyway because I’m determined/stoopid (delete as appropriate)!
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It’s now been over a week since my teacher scored points for managing to render me speechless (not many people manage that! 😉 ). And the update is that the Championships have now been moved to the UK, so at least I don’t have a plane flight to deal with now, pheweee! That could have blown my pain right off the scale. It’s hard enough competing in the UK with my health conditions delivering their characteristic collection of aftermath problems, but at least I know what repercussions to expect from competing here.
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So I’m in ‘training’. Which actually means that when I have a Tai Chi class I practice with aims instead of ‘just’ practicing! Which I obviously need as I’ve been told that I had somehow turned one of the Chen style parts of the 42 form it into a “sexy salsa version”, oops! So yeah, plenty of work to be done whenever I can spare some physio’ time to practice! And what with the need to eat, wash etc there isn’t exactly oodles of physio’ time available to purloin, but you know I’ll do what I can, as always.
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I’ve said it before and I’ll say it again…. never, ever. ever cap your potential. Live in the moment, enjoy the shiny bits, and don’t ever assume that ill health means that we will live in a perpetual metaphorical downpour forever more. There are always moments to make us smile, however small. I do feel lucky in some ways. I certainly feel lucky to have ended up with such an awesome teacher. But I know that the grit and determination of my paced exercise over the years is down to me, and without it I would not have got to the same level of beneficial effects from that pacing today. I can safely say though that physio-ing at something I actually enjoy takes far less determination to keep at it! 😉
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Much love from the spaced-out blogger recovering from shock and cardiology! 😉
x
UPDATE:
The European Championships will now be held in the UK instead of Latvia. The change in venue has also meant a change in date as it will now be held in April 2015. Which means more time to get over the shock and to get some training in during my physio’s!
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CRPS – Frequently Asked Questions

I help out as part of a multi-disciplinary admin’ team in a couple of online support groups. One of the groups has had such a fast increase in membership that we found ourselves trying to keep up answering recurring questions a lot of the time. As we admin’s are also working around our on CRPS, co-morbidities, flare-ups etc we found that the amount of repetition required was taking more time than we could manage to function in per day.

So, the plan was to create an FAQ with a list of themes with various links, snippets of information and so on, so that instead of repeating ourselves and posting loads of information every time the questions came up we could instead say “hey, that’s in our FAQ, feel free to go and have a look”. And it seems to be working well. Now a few lines to direct the questioner towards the FAQ enables us to share lots of information without compromising our own healthcare in the process. Organised, or what?! 😉

But that’s just within that one support group, and until my peers and I get the charity website up and running there’s nowhere else that our fellow patients from outside the group can access these links. Plus even if the file gets shared it’ll soon be out of date as new links are added all the time. So I’m going to add the FAQ here in the meantime. My fellow admin’s are working on other areas to add more info’ and links to what I’ve gathered here so far and I will make sure that it all ends up available online (the charity webbie is being created so we’re getting there slowly despite the health restrictions).

I’ve just uploaded the FAQ. It is not finished (with this condition is never will though of course as knowledge is always moving forwards) and it is a bit rough and ready at the moment, mostly still in raw links (some of which aren’t working as links at the mo’ so for those ones just highlight the website address, right mouse click ‘copy’, and then right mouse click into your browser address bar and right mouse click ‘paste’). I’ll pretty it up when I get to but as I have a long CRPS advocacy To-Do list at the mo’ I decided that prettifying can wait – it’s more important to get this info’ out there and available.

Here’s the new page:

CRPS Frequently Asked Questions (FAQ)

As always, any suggestions for additions, feedback etc is always appreciated. This is to help our fellow patients so I always welcome input.

Much love from me, x

Raising CRPS awareness: ‘adverts’ and Crazy Sock Day

In the UK our TV adverts are meant to sell things. They aim to get us viewers to spend money on products, send money to charities or spend time watching certain programs.

So imagine our puzzlement when we come across fellow patients online talking about ‘adverts’ for illnesses! Our context is that adverts are to sell stuff, and our minds immediately boggle as we wonder what on earth someone would ‘advertise’ an illness for? I mean, who goes shopping for health conditions?! 😉

Well yesterday I fiiiinally found out what these are. They’re more like public service announcements delivering a snippet of information on a specific condition. They can’t squidge much into such a small space of time and, let’s face it, CRPS is so complex that a day at a conference wouldn’t cover it. So they have to go for a bottom line as the potential identifier. The RSDSA has done just this, the bottom line is that if we’ve had an injury with a disproportionate amount of pain then bear in mind CRPS. Here’s the new CRPS info’ video…

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And yes, it is Crazy Sock Day today, and I am wearing some knee high stripeys in honour of Melanie’s awareness day for CRPS & Gastroparesis. 😀

Crazy Sock Day 2014

And here’s the crazily socked feet of some friends as well….

Rory's Fbk offering

Jona's Fbk offering

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Happy Crazy Sock Day people, please do visit Melanie’s Facebook page and feel free to post sock piccies on there in support of her awareness event, 😀

x

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It’s not all in your head!

There are two parts to today’s post again.

WEGO’s health blog challenge: “What’s the most ridiculous thing you’ve heard about your health condition?…”

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The most ridiculous thing I’ve heard about my health condition(s) is the shuddersome concept of… “it’s all in your head”!

Yep, we really get told this in some appointments. Sometimes it’s merely a medical practitioner trying to explain autonomic pain amplification and doing it reaally badly! But often it really is as extreme as it sounds – genuine physiological symptoms get written off as psychologically founded.

Fortunately there is oodles of research these days about how psychological effects in the kind of conditions that I have are often caused by living with the condition itself. So we have plenty of research papers to back us up, the only problem is that we have to be the ones to find and share this research because non-specialist medical staff have often not come across them. (See my ‘What is CRPS?‘ page for some handy research paper references, and the explanation about interpreting anxiety symptoms wrongly applies to Dysautonomia patients, too).

It is important for our doctors to remember that an understandable reaction to chronic health does not necessarily mean mental health issues. We should not have to hide when we are struggling owing to fear of getting mislabelled.

Of course health conditions and mental health issues are not mutually exclusive: it is entirely possible for them to co-exist. This is not an black and white area, shades of grey are the norm, but even without any mental health issues at all patients with chronic health issues should still be supported both physically and mentally for the simple fact that severe long-term health problems are, at the very least, very challenging in the life changes they effect. It is an important part of living with a chronic condition to be able to find ways to keep going, to find new meanings, new value in ourselves, new ways of living and of finding joy in life. With the addition of some handy psychological tools we are much better equipped to handle our situation.

I’ve heard the “it’s all in your head” idea many times. I’m a veteran of appointments where it turns out that I know more than the practitioner, as do many of us with specialist conditions. I have the scientific info’ to undermine their erroneous comment in the sweetest most helpful-patient kinda way! 😉 (feel free to add a comedy evil laugh here!) Ohhhh yes, get in the know peoples, doctors like data so data them towards the corrected viewpoint! Most doctors just haven’t considered the possibility that a faulty ANS can cause anxiety symptoms without any pre-existing anxiety, but once you point it out it makes perfect sense to them. It’s just showing them the alternate angle that they have to think from because our conditions don’t fit neatly into the main themes of medical diagnosis. They check out the organs and do blood tests for normal stuff but everything comes back negative so they think “there’s nothing actually wrong with them… it must be psychological”. But what they are forgetting (because it is not something taught as part of main medical training) is that if it’s not the organs… could it be the wiring between them? They need to run different tests to find out.

The trouble is, of course, that we tend to learn this kind of helpful knowledge retrospectively. Years after we were told it was all in our heads, years after we cried for the lack of support from a doctor when all we wanted to do was be able to get on with our lives, years after those around us doubted that there was anything wrong with us because our doctors didn’t think there was. Years later we find out why the doctors made that error, and we try to pay it forward by sharing the knowledge with our fellow patients who are still early on in their journey. To try and help them avoid the pointless pain and waiting that we had to go through simply because doctors only conducted the usual tests and the negative results falsely led them to think that it was “all in our heads”.

Photo challenge #6 – “…something you let go because of CRPS/RSD”

Clinical Psychology2 (2)

(source)

I was retraining for a career when I had to give up work. I studied for the required degree in my own time whilst working full-time, (thank-you Open University 😀 ), but before I had completed it I had to give up work. I carried on, graduated, then started my masters degree. I did not realise I would never be able to work or study full-time. My choice of career is no longer viable. But my training was in psychology and in research, my intention was to complete the Doctorate in Clinical Psychology so that I could study the post-doctoral training in Neuropsychology. My aim: to help inform and support patients with head injuries as well as their families.

Losing that future was devastating, but it looks like I have ended up with some pretty useful skills to make myself handy to my fellow patients. Letting go of the career I had worked so hard towards was horrible, but I’m on a different path now, and I can do a lot of good on this one as well, x

Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

x

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Gabapentin (Neurontin)

The author is not medically trained, and not advising one way or the other on this medication.

It is very easy to end up with only a part of the information available when trying to find out about a medication. Without more information from more than one viewpoint we have far less of a secure foundation to make a decision which is ultimately going to affect our health. I am not writing this to sway you one way or the other. I would always want any patient to make-up their own mind. That is our moral and legal right to do so.

Any medication has pros and cons. The key is weighing up the odds and deciding what works for our particular body with our particular condition(s), symptoms, medical history and so on. This is something for you to discuss with your doctor / medical team and a pharmacist, and not the right of anyone else to tell you what to do (especially people who are not medically trained or do not understand your condition, hence the inclusion of pharmacist at the reminder of a good friend coz they’re the experts when it comes to meds. I always talk to my local pharmacist before talking to my doctor about a meds issue).

I have friends who have taken Gabapentin in the past, a friend who is currently taking it and finds it helps their pain, and I have at least one friend who wouldn’t touch it with a bargepole, and each of those people is doing what is right for them. So first of all – please do not worry. If you have autonomic dysfunction (and that includes CRPSers) worrying is more likely to set off the fight or flight system and make it harder to process information, make decisions etc. So be kind to yourselves, whatever you, your doctor and pharmacist decide is fine. It is your choice to make, xx

file000303654817 from morguefile

The go-to medication for many doctors when treating pain is Gabapentin (brand name: Neurontin). It is a drug which was approved in Canada for treatment of epilepsy back in 1993. It was never approved for treatment of pain, migraines or bipolar disorder, and yet the company who produce the drug (Pfizer) promoted it for these conditions anyway.

Why would they do such a thing?

Well, in 1998 a study into neuropathic pain in diabetes (Backonja et al) concluded that Gabapentin seemed to include positive effects on neuropathic pain, sleep, and even on mood and quality of life. In the same year a study by Rowbotham et al into the treatment of persisting pain after having shingles (postherpetic neuralgia) concluded pretty much the same thing. These are the pain conditions most commonly used for testing drugs for neuropathic pain, so…. the outcomes sound pretty awesome, eh?

Kaboom! Suddenly, and unsurprisingly, Gabapentin became the drug of the moment and really widely used.

pills-out-of-bottle, stock exchange

Two years later a drug assessment was carried out by the Therapeutics Initiative in Canada. Their intention is to provide up-to-date and, crucially, evidence-based drugs information to doctors. Therapeutic Letter #33 (1999-2000) informed that it had been found that Gabapentin is actually removed by the kidneys and has no painkilling (analgesic) effect after all. It concluded that, at best, it may assist with the two conditions in those studies to a small extent (less than 1 point of pain improvement on a 10 point scale) and only for a small percentage of patients (15%). This drug would therefore not be likely to be approved for the treatment of pain, it just isn’t effective enough to do so. And the reason it can only be said to have a small effect on these two conditions is simply because it cannot be assumed that something that works on diabetic neuropathic pain and postherpetic neuralgia would work on other types of pain condition. Pain conditions vary and so much about underlying mechanisms is still unknown – there just isn’t any foundation to be able make that assumption. Interestingly, this last point was made by one of the authors mentioned above (Michael Rowbotham writing about the design of clinical trials in 2005).

The same assessment also found that all that varying doses of Gabapentin did not vary pain relief at all. The only thing that varied with dose was toxicity to the body. Additionally, about 15% of patients also experienced detrimental effects from the drug.

The final conclusion of the assessment was that “Gabapentin has no role in acute nociceptive pain” and they noted Pregabalin (Lyrica) as being similar in pros and cons but even worse for detrimental effects.

research, test tube, from morguefile

After this, a litigation in the USA resulted in a court ordering all unpublished studies about this drug to be released. Funnily enough, as is sadly still the norm in medical research, the company who created the drug had only published the research that said the drug was helpful. All the research with negative outcomes and conclusions were never made available outside the company. (I have issues with this ‘norm’ and want it to change – all info’ should be available or else how are we and our medical team supposed to make informed decisions about medications? More about this at the end of this post).

More on the negative effects of Gabapentin have turned up in more recent research. For example Eroglu et al, 2009, who found that it stops new synapses being formed in the brain (as does Lyrica / Pregabalin). We used to think that adult brains didn’t do this anyway, but now we know better.

Many pain patients are still on this med, and many new patients are still being prescribed it.

What I was not aware of until recently was that Pfizer was fined for drug fraud over this, 3 and a half years ago.

So why is it still prescribed?

Well, Pfizer still defends its actions and still purports that the drug should be prescribed for these unapproved uses (despite the research showing otherwise).

So the outcome is that there are cons to taking Gabapentin for the two types of neuropathic pain researched, there is no research into CRPS and Gabapentin, it doesn’t relieve pain for most patients because the kidneys remove the active ingredient, but a small number of patients with diabetic neuropathic pain and postherpetic neuralgia do experience some pain relief.

OLYMPUS DIGITAL CAMERA

I said to some fellow patients that I would share this information in case anyone wanted a broader view because we all deserve to make informed decisions. If no-one informs us we’re scuppered from the off. What I don’t want to do is worry you. All medications require consideration of the pros and cons by you and your doctor. There is never a magic pill that fixes everything and has no side effects. If you experience good effects and assistance from being on the drug then you could be one of the lucky patients who has enough overlap with the assessed conditions and also falls into the 15% who experience benefit. If it helps you, it helps you. And we need to make sure we have effective medication for our condition(s). If it’s effective then that’s good. If you want to double check with your doc’ and pharma’ to reassure you then of course do so, but don’t worry.

If you are a patient who has not experienced any help from this drug then you now have back-up to be able to ask your doctor for something that is more effective for your body and your condition. If you are a patient who wants to come off the drug for other reasons, well, you could just throw this in there as well as part of your reasons if you want to. What works for one patient doesn’t necessarily work for another. Neuropathic pain is neurological, and we each develop a uniquely wired and linked brain in the womb so it’s not surprising that what works for one doesn’t work for another. The key thing to remember is that neurological illness means variation between patients.

So some patients will stick with Gabapentin, and others may not. It depends what is right for each of us. Though the research suggests that anyone who finds it helps their pain is in the minority.

I hope that this helps, x

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Thank-you to Lili over at Taming the Beast who originally alerted me to Gabapentin issues.

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A note about research publication
It is the norm’ that research gets published if there is a positive outcome, it does not get published if the end result is negative data. So we cannot gain access to the other side of the story which we need to make an informed decision.

It is a simple but crucial difference to publish all data.

And this is what Dr Goldacre and his team is trying to change internationally to help us patients by getting our doctors access to all of the info’.

The website and petition is here (at 58,783 signatures when I wrote this, and it needs more to have more impact). And here’s all of the companies who are already on board with the idea. (Yep, I am openly biased on this one! I’m all for having access to all of the information. Otherwise it leaves doctors and patients second-guessing medication which is downright silly)!

Dysautonomia awareness month

Oh how ironically this month began for me! Here we are in the awareness month for autonomic dysfunction and there I was, on the last day of September, listening to a doctor tell me that I had not been clearly diagnosed with any sort of autonomic dysfunction, even though the whole reason I was there was to discuss my third type of meds specifically intended to help stabilise my Autonomic Nervous System (ANS)! <headdesk> !
(She wasn’t my usual doc, I’m off to see my doc instead in another week or so).

Yep, you didn’t just imagine that paragraph, I really did go for an appointment about my latest ANS-stabiliser med only to be told that I don’t have any official autonomic dysfunction!

I have CRPS… that in itself is a form of autonomic dysfunction (Dysautonomia). (See my description of CRPS including the ANS pain amplification here).

Current research shows the extent of autonomic involvement in CRPS. (See Schwartzman’s research paper link on this page), and indeed a lot of autonomic issues have popped up to keep me company on my journey through life during the last few years.

I wrote a post about how SSRIs can help to stabilise the ANS, about how jaw clamping can be a side effect owing to resulting dopamine suppression and how it might be worth me trying a mixed SNRI as they function as both an ANS stabiliser and reduce dopamine suppression… Well, the doc I saw said that she only prescribed it because I asked for it!

It is true that I want a doctor to listen to what I have to say, but one that prescribes whatever just because I ask for it? How responsible is that? I’m not medically trained. I’m an expert patient – I know a lot about my own condition, and I’m trained in research so I know how to trawl the journals, how to read things with a pinch of salt and how to slowly build up a potential picture, but I expect to be able to take information and knowledge with me to then discuss them with someone who is medically trained and can offer further insight on the information I’ve gathered. Not blindly prescribe me meds without any discussion at all and without any knowledge of my health issues.

References to my having ANS dysfunction should be throughout all my notes of the last few years and the advice of the consultant ties in exactly. However, lack of awareness of autonomic dysfunction is the issue here…

We have here an example of a doctor who plays it by the book, which is not to be sneezed at on it’s own, but this doctor will not see a pattern in a patient’s notes and does not want patient involvement in higher thought processes. She wants to see a clear diagnosis and if the consultant does not state the obvious she sees it as non-existent until the consultant does so.

She has advised me that she does not want to hear me use medical anacronyms, and she does not want to hear about dopamine. She stated clearly that..

“We are here to treat patients and symptoms. That is all. I only want to hear about side effects, I do not want to hear you talk about dopamine.”

Oh silly me, there I was interested in a treatable cause rather than an endless treating of symptoms and side effects instead. *sigh*

There are some times when you stand up for yourself, and I did. With tears in my eyes that did not fall I pointed out very calmly that it is difficult not to mention dopamine when it may be the whole reason that I have jaw clamping issues – we cannot treat the cause if the potential cause is not to be mentioned or discussed. I also explained that I am not stupid, I know how to read research in a sensible unbiased manner and have not just grasped one paper and run with a concept.

I got a tight-lipped ‘look’. She stood up to indicate that it was time for me to leave. I had been told. I knew I would get nowhere with this doctor, even talking sense was not allowed because it was not in her rule book for patient behaviour. So I left…

…and promptly burst into tears in the corridor outside. Ah yes, there are times when you stand up for yourself, and times when you keel over. Both in one day, eh? Classy!

Do not research for causes or use medical terms

After sobbing my heart out quietly in a sideroom which a passing nurse had kindly offered me, I eventually got to a stage where I thought I could walk home without nearly passing out. (No ANS issues, haaaa!) And by the time I left I had formulated a plan.

The Plan:

1) Never to see that doctor again
2) To catch up with my paperwork and get my notes from the autonomic consultant because his letters left so much of our conversation out (and therefore won’t be in my general notes)
3) To ask my doctor to fax the consultant dept’ asking The Question i.e. please can you put in writing to what degree this patient had autonomic dysfunction at the time of her appointment?

The reason for #3 is that I have been through several years of autonomic-related appointments… respiratory (for breathing techniques and acupuncture), cardiology (for ECGs and more), culminating in the neuro-vascular autonomic specialist tests last year and the related consultant appointment this year, since followed by a hypermobility specialist and soon to be followed by a jaw-clamping (TMJ) specialist. If I risk seeing a doctor who doesn’t believe all of that despite the list of my medical adventures, then I need a bulletproof statement of illness from a specialist to bypass such silliness and allow me to have a sensible and relevant conversation instead of going back to square one again.

Don’t forget:

– Always get copies of your hospital notes
– If your doc’ doesn’t respect you and/or won’t work with you – change doctors

The autonomic consultant didn’t state the obvious because, to him, it is obvious. He and I both know it is already in my notes and besides – I’d been sent to him for specific testing to figure out what exactly was going on with my ANS, not to find out if it was wonky or not, we already knew it was wonky.

If the doctor I saw had been aware of autonomic dysfunction then all the info’ is there in my notes for her to see. That is how important raising awareness about this condition is. Because without that awareness patients can be left hanging without appropriate support, discussion and treatment for their condition. And, like me that day, they can feel so very exhausted from having to fight for every little basic step when they really shouldn’t have to.

Knowledge. Awareness. It really does make a massive difference to effective appropriate care.

To each of us patients, to our treatment, our quality of life, our ability to concentrate on our life instead of endlessly trying to explain to a doctor who draws lines in places where there would be no need if they were aware of some important basics.

And to each doctor it would save them time, and help them to do their job more efficiently and effectively. Not to mention reduce the number of angry/weepy/distressed patients they have to deal with. Plus it would enable treatment of some of the causal issues instead of the endless roundabout of treating symptoms and side effects without looking at the ‘why’.

There is no need for the kind of damaging appointment that I experienced.

Awareness needs to be raised to avoid this kind of damaging event which can detrimentally affect patient health. Bear in mind that living with autonomic dysfunction such as POTS has been likened to the quality of life experienced by patients living with chronic heart failure. Yes, the kind of damage that can be done through lack of awareness is frighteningly massive.

I am able to go to another doctor, I have years of self-advocacy experience behind me and more research papers than you could wallpaper your house with. But what about our fellow patients who are new to this? Just learning? Still trusting what all General Practitioners say instead of having enough hard-earned know-how to spot which doctor ‘gets it’ and which doctor could be damaging to work with?

This month is Dysautonomia awareness month for good reason. It’s not for heart-warming feel-good vibes. And it’s not some sort of my-illness-is-worse-than-other-illnesses thing! It is simply a response to a dire need for greater Dysautonomia awareness.

Awareness in patients
Awareness in doctors
Awareness in family and friends

Awareness solves a lot of potential issues before they even begin.

So if you get the opportunity, please share some info’, here’s a few ideas for links you could share as well as links to some other ideas about how to get involved…

Dysautonomia awareness ribbons from DINET on Facebook which you can use and/or share

Dysautonomia SOS basic info’ link to share

Dysautonomia International are having a tweet-a-thon

Dysautonomia International map of events to see if there’s one near you, (you can choose what is shown in the drop-down box at the top, at the time of writing there are only events listed in the USA)

Other ideas and links listed here from Dysautonomia International

Other ways to get involved via Dysautonomia SOS

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome: A very informative video by DINET about living with POTS. As many forms of autonomic dysfunction involve the same symptoms this is a great video to watch whichever form you have as there is lots of information and advice included.

What is Dysautonomia?

Dark blue for Dysautonomia (Autonomic Dysfunction)

Dark blue for Dysautonomia (Autonomic Dysfunction)

Thank-you, xx

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Hypermobility specialist appointment

One of the outcomes from my neuro-vascular/autonomic consultant appointment back in April was that the consultant referred me over to one of the top two hypermobility spec’s in the UK. They are to be found at the University College London Hospital (UCL) in Euston Road, London, UK. My referral came through very quickly and I was offered an appointment this September which actually came around far quicker than I thought it would. (I must be getting older if time is passing that quickly, either that or I am having a lot of fun 😉 ).

That hypermobility appointment was on Tuesday of this week.

I had been sent some forms to fill out in advance….

UCL q', circle symptoms

I circled 30 out of 48, and wrote a note against a further two. Most of my friends with autonomic dysfunction said they would have circled a similar amount of symptoms.

There was also this set of questions…

UCL q', delete as appropriateI only answered ‘yes’ to 4 of these. Although I can do ludicrous stretches with my legs, can bend over to put my palms on the floor without bending my knees and have sublaxation of my shoulders and kneecaps, I do not have any ‘double jointedness’. Most of my hypermobile friends answered ‘yes’ to more of these than I did.

So that was the preliminaries. Now for the appointment itself…

The appointment was for 9.30am. In London. I live on the south coast. Eek! So the alarm went off at 5am… Magic Dude and I saw the sunrise on the way..

Sunrise on the way to UCL

Once parked up and braced for the usual extortionate parking fees we headed off to UCL. After nearly passing out in the bathroom I sat in the high ceilinged entrance hall and found that I had a tall wall of modern art in front of me to look at while I waited for the world to settle back into place…

UCL wall art

As we were fortunate enough to not get to caught up in too much rush-hour traffic we headed straight to the canteen for a coffee for him and a cuppa for me. As a long-time Tea Fiend I was a little disappointed with the size of my teacup! 😉

UCL coffee and tea

As with the neuro appointment, the appointment time given in the letter was not actually the time I would be seeing the consultant as they tend to take some tests beforehand. Here I was weighed, my height was measured and I was asked to head off to the loos to produce a urine sample for testing. There was nothing untoward in the urine sample but then again they didn’t forewarn me to hold it in for a decent first-wee-of-the-day sample so they didn’t really have much to work with! ;-P

Then the next stage was to see the consultant.

Consultant appointments for those of us with multiple aspects to our conditions basically means discussing only the aspects which fall into their specialist area. I had seen the neuro consultant, had the autonomic tests related to that and now I was with a rheumatology/hypermobility expert to discuss only musculo-skeletal issues. It can be pretty frustrating having to work in this way when we are used to the fact that everything is interrelated, but it’s just the way it is, they cannot make guesses outside of their area of expertise. They can, however, refer us on if need be.

So… I saw a super professional expert who began by finding out parts of my medical history that related to the injury that caused my CRPS and how the disease developed and spread through my body. A ‘what happened when’ question and answer session to help them build up a picture. As hypermobility can also cause issues with the autonomic nervous system (ANS) I was hoping that she could have some insights on the autonomic hassles I’m currently experiencing, but she was focusing on musculo-skeletal issues only so that is being dealt with separately (and I will write a separate post about that side of things).

I was twisted round, bent over, asked to walk up and down the room, had my skin pulled and all sorts! But the consultant was incredibly gentle and careful. I experienced no exacerbated pain from her assessment.

The outcome was that I have localised hypermobility in my trunk. It’s possible that it is so localised partly because I have worked so hard at the physio’ generally but have lost some core strength owing to near-fainting (as it has prevented me from doing any abs-strengthening exercises for some time). As usual I was told that I was doing all the right things and that there was not much more that could be done because I’ve covered it all so well.

The suggestions that will be in the letter that gets sent to my doctor will be:

– a very small dose of amitriptaline a couple of hours before bed. The reason for this is to help me to get better quality of sleep which should impact positively on pain levels etc, and the reason the dose has to be so small is that it interacts badly with SSRIs (which I am currently taking to help stabilise my ANS). I will, of course, do some research on this before I have an appointment with my doctor to discuss it.

– aqua-aerobics. The reason being that the Tai Chi is fab’ physio’, but that the non-weight bearing of being in the water could help other aspects as well. (The original suggestion was swimming, but I can only thrash and sink so the aerobics enables my feet to stay on the ground! 😉 ) The simple problems here will be cost in finances and managing to get out of the house for more of my physio’s, plus cold hurts my body and swimming pools tend not to be very warm. Could be tricky, I’m gonna put this one lower down the list of priorities and work down the list towards it.

– that I am referred to a TMJ (temporomandibular joint disorder) specialist regarding my jaw problems (which are currently being exacerbated by my meds and this is part of what I will be writing about in another post very soon).

In addition to these suggestions I was sent for a blood test and an x-ray to give her more information on my health status.

The x-ray was specifically for the consultant to see if I have shallow hip joints (which I’ve been told before that I have, and it also runs in the family).

The bloods will cover a lot of angles, including B12 and vitamin D, and is even checking for low levels in certain things owing to me being a veggie. Pretty thorough, eh?

The overall experience was one of efficiency and care. Who could ask for more, eh? I’ve had some pretty awful experiences with hospitals over the years but this one had systems in place to cover everything that I needed that day. I commented to the radiologist about how efficient everyone had been and she chuckled saying “Really? You should have been here yesterday!”. Sounds like I was lucky enough to be there on a quiet day! 😀

UCL day, tea after blood test

Mulling the appointment over tea afterwards, Magic Dude said that the appointment wasn’t what he expected. He had been expecting some sort of advice or treatment that could help with my day-to-day experiences and pain levels. He was not prepared for a patient in need of help getting the ‘you’re doing great’ response.

I, on the other hand, have a habit of hoping for the best and preparing for the worst! My hopes for consultant appointment outcomes are generally to get more info’ and understanding on what and why. I’m basically looking for clarification. After all, it’s me at the centre of my healthcare – I’m the only one doing the multi-specialist thing in the middle. So it’s important that I learn more about what’s happening in my body to be able to explain it to other medical practitioners and piece it together with my existing understanding.

Essentially I’m looking for more pieces of the puzzle that will help reveal more of the picture. I’m used to dealing with surprised consultants trying to find out how on earth I know so much and I’m used to being told that I’m doing pretty much everything I can already. But I’m in this for the long-term haul, every snippet of info’ and advice counts, this is how I help myself when all the usual treatment suggestions are moot.

UCL hospital

Bye bye UCL hospital

If anything progresses from this appointment I will let you know. I know that several readers are heading towards hypermobility assessments as well so good luck on your journey, I hope that this helps prepare you a little.

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