1-10 Pain Scale descriptors for patients and doctors

I damaged my coccyx back in January but I have a pre-existing intractable pain condition (CRPS) so I don’t show how much pain I’m in. It’s a habit that’s developed over the past 18 years of living with severe pain all of the time. Only my boyfriend can clock when the pain is beginning to soar, those of my friends who think they can see when I’m in pain have no idea that by the time they spot it I’m on the verge of inward screaming.

So if my own friends cannot see how much pain I’m in how is a doctor who rarely sees me supposed to comprehend my reported pain levels when they don’t match my outward appearance?

Most practitioners (including pain management teams) will use the 10 point pain scale. But it’s hard to convey what our understanding of that scale is.

When I was first seen by a pain management team aaaall those years ago I was told that a 10 was the worst pain that I could “imagine”. I’m pretty imaginative! And besides I figured that even though I had reached the stage of realising that if someone offered to chainsaw my legs off with no anaesthetic that I would have said ‘yes’ in my desperation I still figured that there must be experiences out there that are even worse than that. So I rated my pain at a 6 when I now know it was a baseline 9 with regular 10s.

When I had completed the maximum allowed NHS pain management treatment time I knew that my baseline pain had reduced a bit so I felt I ‘had’ to rate it less than my starting ‘6’ so I rated it at a 4 when it turns out I was actually getting discharged at a dreadful baseline (i.e. what our pain levels never drop below) of 8. So yeah, the team probably thought they did pretty well and I didn’t know why or how they expected me to be pleased and able to cope/function thereon after. *sigh*

Miscommunication is easy when a scale is subjective.

Being told that a 10 is the worst pain we’ve ever felt doesn’t usually help much either as with a severe 24/7 pain condition the likelihood is that this is the worst pain we’ve ever felt and that just leaves them with a 10 which they often don’t feel is very helpful even though we’ve answered within the parameters.

So… I figured (years later) that I had better find some descriptors for each number on the scale. That way I could share those with my doctor so they could see what pain levels each number represents for me. It makes it easier for them to understand what their patient is actually dealing with so it’s useful input for their assessment.

I collected various descriptors from multiple medical sources and started recording my pain (and other symptoms) in accordance with these. My doctor ended up with several weeks worth represented in one easy-to-assess graph which showed clearly my pain baseline as well as how often and how high the pain spiked (I wrote about that, and first shared my less prettified pain scale descriptors, here). Doctors have a mere few minutes to talk with us so it is helpful to be able to present data in the most accessible way for us to get the most out of an appointment and for them to best be able to understand and help their patient in the time allowed.

It helped me. It helped my doctor.

Especially as my high level intractable pain has been with me so long that I tend not to ‘look’ as bad as I feel. Though after making it to the surgery, through a conversation and then home again I usually find that by heck it shows by then. The doctor doesn’t get to see that bit because we chronically ill have to be at the best we possibly can be to be able to hold a conversation well enough for the meeting to be useful. It is necessary and yet very misleading.

So, here’s my compiled pain scale descriptors in a more user friendly format that when I first wrote about them. I hope that it may prove useful to patients and doctors alike. The reason the compilation is more helpful to me is because when one aspect of it doesn’t pinpoint it well enough another aspect will help me figure out where I am on the scale. Pain interferes with decisions, assessments, pretty much any processing to be honest! So I find that the higher pain level I’m at the less capable I am of accurately placing it on the pain scale. Particularly helpful to me when I’m really bad are the points at which tasks and then concentration get affected – I know that tasks are being affected but when my concentration is being affected it takes longer for me to actually realise that the reason I’m struggling to pinpoint my pain is because… my concentration is being affected!

pain scale 1-10 also a pdf

And here’s a pdf version:
pain scale 1-10

A fellow expert patient and ex-nurse pain blogger, Isy Aweigh, also wrote about the alternative option of personalised pain scales here, which is well worth a look.

Hoping this helps,

With love from me, xx

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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.

bertram

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

If I could do anything as a Health Activist…

That’s an easy one to answer, but a tough one to precipitate.

Awareness. Knowledge. Informed decision-making from informed discussion with our medical practitioners.

The problem…

..how to increase awareness of our complex condition, (including family/friends/employers and, crucially, medical practitioners).

Time is of the essence with any new development involving CRPS and Dysautonomia. But time slips by as we work to source information and share it with our doctors.

If I could do anything as a Health Activist it would be to provide a source of gathered knowledge and research data to back it up, that’s why I created and continue to update my What is CRPS? and What is Dysautonomia? pages (and there’s even research back-up on my Health Benefits of Tai Chi page). 🙂

Some of the data which we want to share does not exist yet. The demographics we talk about a lot amongst ourselves (late diagnoses, lack of support from our doctors and so on) is not backed up with studies, so it is dismissed as anecdotal. We need scientific evidence to back it up.

So… gathered knowledge – I’ve started that here on this weblog, I’ve got more info and research references to the ‘What is..’ page as soon as I can. Plus there are several of us CRPS patients discussing a potential website. So I’m always working on this aspect.

And…. fill in the holes regarding some of the demographic data – I’ve just completed a post-grad’ piece of research which covers some aspects of this, (an online paper still to write when my brain hangs around long enough at a time to do so), and wouldn’t it be rather cool if I could do more? Any universities want a part-time (preferably mostly distance flexitime) disabled health psychology PhD student that they’re willing to fund? (Thank-you Open University for the chance to apply for a couple of available funded slots, but I don’t know that my health could take a house-move to Milton Keynes just at the moment so I’m having to look for more local options and then weigh things up, x)

As you know, I tend to set my heights crazily high and then just see how far I can get. Who knows what the future may hold? Maybe not masked crusading, but being helpful would be good!

Pretend Superhero

A bit of silliness always keeps me going! 😉

x

“Useful Links” page for fellow patients

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For extra info’ and resources to help us improve our self-advocacy I have a Useful Links page. It includes links for research papers to show doctors, information to share with family and friends, organisations to contact for more information, wallet cards, autonomic physicians list, and more.

I will continue to add to this page over time. If there is anything that you would like to see added or any suggestions for links that could be helpful to other patients then let me know as I want this page to grow so that it can be as useful as possible.

Much love to you all from me,

x

Useful Links page

Create your own personalised pain scale for better medical info’

One of my fave bloggers has just posted an amazing post!

If you, or someone you know, has a pain condition…. you just *have* to see her templates and reasoning for creating your own personal pain scale.

We all know that pain is subjective – we each experience pain but we can only rate it by what we have experienced. When asked to rate our pain at a score out of 10 the response as meaningless as the concept of “how long is a piece of string?”. Answer: the string is as long as the string is long.
Or maybe: the string is twice half it’s length! 😉

On a scale of 1-10… how much pain are we in?

– What’s the scale they’re imagining it to be?
– How close to their understanding of the scale is my own understanding of it?
– If I explain what my understanding is when I score my pain, will they note it down? Or just note down an arbitrary number that means different pain levels depending on whose reading my notes?
– Would they ever understand that a 10 on the pain scale for a CRPS patient is basically “magic me out of existence because I wish I didn’t exist”?
– If I pointed that out would they just assume I’m depressed or something?!

Elle and the Auto Gnome, Pain scales views!

I’ve talked before about how I used the standard 10 point pain scale to create something that I could use for non-pain symptoms as well as part of a previous post: What I take with me to my doctors appointments. (There’s also other info’ on stuff to take to your doctor, so have a look if you think it could be helpful to you, x) It’s always been more than a niggle to me as the standard pain scale is just so arbitrary – there is no general consensus for what the pain numbers mean. They quite simply mean something different to each of us (and even then our meaning may change over time). All it does is provide a before and after reference for physio’ teams to see if they’ve ‘improved’ our pain levels before discharging us from their care. (It doesn’t take into account any changes in our understanding of what the pain scale might mean during our experience of talking to the physio’ during the course of treatment, either).

So. Yeah. The pain scale sucks.

It’s arbitrary and pointless.

Especially when the pains that are being experienced by the patient are off any scale that the medical practitioner has ever experienced themselves. They’re just not in a position to comprehend that an 8/10 for a CRPSer is ‘nearly screaming’.

So – we need to remedy this.

If you’re going to discuss a pain condition with a doctor, remember that they’ll comprehend your experience better if you can use a scale that ties in with what it’s limiting effects are on you. And not just the physical effects, either. Pain disrupts all sorts of processes, not least our ability to comprehend and understand.

Below is the link to the brilliant post that can help you to do this. It goes into more detail on how to do so, with examples of the blogger’s own CRPS pain scales that she’s created over the years to help her doctors to understand. Notice that it’s okay to create a new one when the old one just doesn’t apply any more. And the different examples also function as templates that you can choose from to create your own scale. This wonderful lady (with a nursing background – she knows what she’s talking about 😉 ) has noted at the end of her post that these are available to use, to share, to help. 😀

And if you think you might end up looking for this link on my blog sometime in the future when your are more able to spend the brain-time, then you can also just go straight to the tab on the homepage for Useful Links as I’ve added the link to the blog article there and noted it as ***Highly recommended***.

Here’s the link: Pain rating scales that describe reality  

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Always get copies of your hospital notes

Towards the end of last October I contacted four different local hospitals asking for my medical notes from the last two years of assessments and treatments. This was prompted by my upcoming consultant appointment in London as the specialist nurse had advised me over the phone that any information I could forward for the consultant would be very helpful. I then received my first big form/booklet to fill in with regard to the disability benefits changes in the UK and realised that medical back-up would be very sensible for that, too. Though the notes did not arrive in time for the Incapacity Benefit to Employment Support Allowance application and, as it turns out, my only contact thus far in London has been two days of tests.

I received my final tome of medical notes this morning, so the scores are finally in…

Local Cardiology hospital: 10/10 for posting my medical notes to me within a couple of days of asking, and for no charge at all. 🙂

General hospital about 40 minutes away (Respiratory consultant & specialist respiratory physio’): -2/10 for eventually posting my medical notes at an upfront cost of £10… to a completely different house! (Super-sleuth postie managed to get it to me eventually). 😦

Local General hospital (Pain management, and respiratory physio’ including auriculotherapy & acupuncture): 4/10 for sending me very comprehensive notes also at a cost of £10 (I’ve just scanned in aaaall 56 pages!), but it took them from near the end of October until today to actually get them to me. :-/

Specialist hospital’s neuro department up in the Big Smoke (London): not yet entered for scoring as contact is ongoing, I’ll ask for copies of the notes once there’s more to ask for (I’m still awaiting an appointment to see the consultant after those two days of tests, y’see. Hopefully I’ll get a letter soon with an appointment date for this month or next month. I hope).

Gee whizz, after all that excitement I need a cuppa!

If you get can copies of your notes you can have assistance at your fingertips when seeing other medical practitioners. I have lost count of the times practitioners have said “And who diagnosed you with CRPS….?” because they need to double check that the information I’m giving them is correct. So I find that a copy of my diagnosis letter in my handbag saves a lot of time, and since asking for my notes I also now have various medical letters and scribblings with the magical words “autonomic nervous system problems” and similar. Very helpful! That way I can bypass the doubt and cut to the chase.

Here’s wishing you all a positive 2013, I hope you get all of the appointments and support that you need this year. And on that note, here’s a little video from the RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) in the USA about the importance of us becoming our own advocates to keep our health on track. In my experience, becoming my own active health advocate is the best thing I ever did.

Lots of love from me,

x

Soapbox and Superheroes: Living at the centre of our medical info’ web

Hello alI, yep I’m still here, but the daily health blogging challenge for this November slipped backwards a day or two earlier than I’d hoped. I’ve got some hospital tests coming up, and the reduction of meds, required for the tests, is testing me already!

I’ve been trying to access my medical notes from three different hospitals to take with me to this latest appointment. It strikes me that this is an awful lot to have to do as the patient, especially when struggling so much day-to-day already.

As patients with ridiculously complex conditions it falls to us to be the proactive instigators of forward movement in our healthcare. As I’ve said in previous posts, primary doctors and even secondary level specialists just don’t have the understanding to provide appropriate treatment for the broad range of multiple specialist areas that our health wonkiness covers.

This is not a fault of theirs, of course. It is understandable that such specialist conditions are not known by primary doctors who are required to have a large amount of general knowledge. But it is hard for them to know who on earth to refer us to when they don’t understand what’s going on within our bodies any more than we initially do. Our symptoms present a confusing and often paradoxical array of ‘what the…?’

Specialists, at the secondary level of care, are the ones we get referred to after initial basic tests have been performed (blood tests, basic ECGs etc that can be conducted within the doctor’s own surgery). We are often referred rather randomly depending on what our doctor thinks is worth looking into as a result of how our symptoms present to them. But referrals often don’t help much either as, for example, a cardiologist won’t have enough neurological knowledge to be aware of the neuro’ treatment options which can enable us to avoid unecessary and, in the case of CRPS patients, potentially long-term health-worsening effects of surgery in such treatments as fitting a pacemaker. (I previously wrote about the pacemaker suggestion I received and I knew it was not a first option choice, but the cardio’ just didn’t know what else to do).

Tertiary level specialists are reeaally specialist. They’re the ones we could do with getting to see. The trouble is that our doctors and other specialists don’t necessarily have enough data to work out which area of specialism we need to be assessed within, because the data they need is multidisciplinary by the nature of our complex conditions. And a specialist in one discipline is not going to have info’ from one or more other disciplines to have that all important ‘Eureka’ moment that we need.

So, who does this job fall to?

The patients.

But we are not medically trained. So what happens?

We spend months, and often years, getting bounced around like a pinball in a medical game of chance, timing and whether we’ve got the right angle on the symptoms. And yet somehow we always end up rolling back down into nowhere so that we have to kickstart the process again and again ourselves. Right back to square one… sat in the doctor’s office explaining symptoms which have got to the stage of being truly beyond unbearable otherwise we wouldn’t be there (because unbearable symptoms is something that is just everyday life for us nowadays). And we tend to sound so calm and collected most of the time simply because we have learnt how to present as ‘normal’ a front as possible through intense pain that used to have us screaming out loud, through symptoms so bad that we should be falling over or unable to make any coherent sense at all. Yes, the years of sensitising us to all the little oddities in our bodies and brains means that we spot the symptom slide early and immediately put into play some sort of mechanism that allows us to soldier onwards, and we don’t even consciously always realise that we are doing so because it’s become an ingrained habit: how to look and sound as if we are functioning normally when in actual fact we’re not really here any more! This is helpful to prevent from doctors going down the ‘hysterical patient’ assumption, and yet incredibly unhelpful in that we are describing intense distress whilst looking really calm!

So…. after years of square one, we get into the habit of explaining our condition to the doctors. Some balk at patient knowledge and assume there’s some kind of paranoid or hypochondraical moment going on! (sigh) Others realise they’re out of their depth but don’t know what on earth to do next and thus display their rabbit-in-the-headlights look, and sometimes they honestly say “I just don’t know what to do.” But as the years wend on we learn that presentation is the key. How we present both ourselves and the data to doctors often affects the outcome.

So… in we go… here are the facts, this is what I was diagnosed with (copy of letter to back it up), which obviously relates to having a faulty ANS (copy of research paper(s) to back that up, doctors like data, remember), here is my list of symptoms (one or two A4 sheets of not-too-small fonted type in simplified, easy-to-read form, under headings if we think it will make it simpler), these are the two or three most horrific symptoms right now that I need to have addressed (reduces the overwhelming amount of info’ to a few things they can focus on constructively), we reassure them that we would never do anything silly like try and diagnose ourselves (they relax a bit and continue to listen and weigh up the info’), but given that we know that my body has this wrong with it, and that this relates to that, and that these symptoms relate to this, it seems entirely possible that the new symptoms could be related to this as well, of course we are not medically trained, but the obvious links between this and that would suggest that it would be very sensible to see someone trained specifically in both this and that, so I’m not saying I’ve definitely got the answer or anything, but it just seemed to make sense to me, so I did some research just in case and I found that there is a specialist here and here that could be helpful (backed up with the relevant experience and current medical post info’ of the tertiary specialists, of course)…. (allow their brain time to see the totally pure sensible logic in this, there’s no creative-scaredy-patient traces in what we’ve said at all, just the facts, presented in the most digestible form), anyway, I’m not medically trained which is why I’ve come to you Mr-doctor, because I really need to do something about this, I really need your help. What do you think, Mr-doctor?

And Mr-doctor breathes a sigh of relief, because it really does make perfect sense, it does all link in, and there’s no way he would have seen the connections without the patient’s expert input. Mr-doctor says “I think that is a really good idea!”

(More info’ on what I took to my doctors appointment here).

But though we can see how this is the way things are, what does this mean? Aaaall patients with comparatively rare/unknown/complex conditions have to become their own experts to self-direct their own treatment options?

Yes. It does. It’s not ideal. You could even argue that it’s not right. But talk about problematic to ‘fix’.

We have to educate ourselves so that we can explain our own conditions to doctors. It might sound a bit weird to most people, but to those of us living with a complex multi-disciplinary condition it is simply the way it is. The way it has to be. Or we don’t get treated. Or worse, we don’t get treated appropriately which can cause more health problems than it solves if the knowledge isn’t there.

In addition to this basic truth, as pants as it is, (and it is pants), there are issues which I am experiencing now. I saw a respiratory consultant and specialist respiratory nurse at one hospital, I saw a specialist respiratory physio’ at another hospital and had a tilt table test in a another department that was nothing to do with the respiratory stuff (admin’-wise anyway), I’ve had numerous ECGs at another hospital, and goodness knows how many notes are floating around however many hospitals in the South of England about me. The problem is that that’s where the notes are and that’s where they stay.

You’d think that my doctor would get copies, or at least some sort of informative summation. But no. The poor chap gets bugger all. Sometimes he might get a letter with a couple of not-very-informative lines in it. How is he supposed to direct healthcare for his complicated-health patients when no-one tells him the specifics of what’s happened at the referrals he’s sent them to?

So yes, when we’re in a situation like I am now… hospital tests over two days coming up… the long journey to and from a specialist hospital will cause major health issues (even with Magic Dude driving and looking after me)…. I’m nowhere near ‘fixed’ when I’m on my meds, and for the tests I’ve been asked to come off the meds…. medless me means brainlessness beyond belief, moments of brain where I can do something like write this if I concentrate hard enough, if I’ve rested long enough, if I’ve managed to eat and drink enough fluids, if…, if…, if….., ….. (I’ve done pretty much no thinking or doing for the entire day, It’s now 6.30pm and I’m just about managing to write this)… the tests will cause flares in my dys‘ symptoms and in my CRPS pain levels, I have to brace myself for the recuperation period afterwards…. and yet…. I also have to phone round different hospitals asking how I get copies of my notes, then go round in circles as people try to figure out who I need to ask, then every hospital has a different way of working (one got the specialist to give them the info’ and just posted it out to me, one emailed me a form I have to post, another gave me contact details where I can send a letter, the latter two may cost me money but no-one can tell me how much until they see how many notes we’re talking about). I’m struggling to stand upright to get myself food, and I’m struggling to think words into sentences, but I have to do all this extra work because if I don’t the specialist won’t have any extra information because no-one ever sends notes to primary doctors to keep them all in one place.

This is my soapbox moment. But there’s nothing much we can do about it. Yes it’s reeeeaaally hard going. But if I don’t do this the notes won’t be with the tertiary level specialist, and then he’ll have less data to work with. Doctors neeeed data, that’s what they do for a living. So it’s my job to gather it all together in one place, because if I don’t the data just won’t be included, and it’s my job to explain my health to doctors.

Of the three hospitals only one could get the info’ to me quick enough, and they didn’t charge me for it either. So my huge thanks to the admin’ lady at the local cardiology department who sent me my ECG and tilt table test results. They are the ones I most wanted to receive in time for this appointment.

From now on, I shall always ask for my notes as a matter of course. I shall add them to my copies of all sorts of medical stuff at home. I am the data-holder, I am at the centre of the web of contacts and information. I feel that my doctor should also have this honour, but as he does not I shall share the data with him. After all, he and I are best working as a team. He as the medical professional and I as the expert patient. I think that’s a blummin’ good team!

It’s just hard on the patient when they’ve got a complex condition to try to live with every moment of every day already, to then have the added responsibility of Health Programme Manager and Adminstrative Manager as well as Don’t-know-how-you-do-it Super-Hero of the Chronic Conditions League of SuperheroesTM!

Soapbox moment over, this is just the way it is. We have to allow ourselves some downtime, but for the most part we wear capes because we darn well have to!

All day, every day, 24/7, relentless, non-stop, complicated, unpredictable and distressing health issues automatically means getting awarded a cape, right? 😉

Love and best wishes to all of my fellow superheroes, don’t forget that even superheroes have to take their capes off to put them in the wash from time to time, our Clark Kent moments are all part of it. It makes us no less phenomenal, we each would be less of a Superhero if we were not human as well, x

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McGill Pain Index, CRPS and Fibromyalgia

Pain is a subjective experience. It is difficult to comprehend other people’s experience of pain without having a way to somehow compare pain levels. So, back in 1971, Ronald Melzack and Warren Torgerson published a paper showing a way they’d devised to do just that. It was the McGill Pain Questionnaire, (named after McGill University which they attended in Montreal in Quebec, Canada).

The McGill Pain Index that resulted from the questionnaire is not just a number on a scale. Each number, representing the pain level of an injury or condition, is compiled from lots of data which includes numerical scores as well as descriptive words which patients have used to answer various questions about their pain experience. The various components have been assessed for additional aspects such as consistency. This scientific scale has been rigorously tested over the years and has withstood all tests into reliability.

So it’s a really useful tool to get our heads around pain which we may not have experienced personally, and for putting our own pain into some kind of perspective for others.

There are several versions of the scale diagram visible on the internet which show the placement of various injuries and conditions on the scale of 0-50. But with the copyright issues online it is difficult to know which ones we can share.

So, with that in mind I started creating my own diagram from the scientific information which is readily available. There is an extra addition to my diagram, however, as I found one research paper which had used the McGill scale to assess pain levels for their participants with fibromyalgia, and I feel that this is important to include as it is another variable pain condition which many people are not really aware of. The research paper found the fibro’ patients’ pain levels to be at 29 and 30.

Here’s hoping that the diagram can help to reassure some friends, families, employers, teachers and so on that their CRPS and fibromyalgia contacts really are living with a genuinely high level of pain.

I will also upload my diagram as a photo’ on the Facebook page, and I’ll even create some different background colours that you can choose from. 🙂

Here’s my little diagramatic piece of techy(ish!) artwork…

McGill Pain Index, final

Although I have a copyright banner on this blog to protect my words and thoughts, and some personal pic’s, please be assured that if this diagram will help you then feel free to share it as that’s what I created it for.

Much love and best wishes from me,

x

References used:

Subspeciality Management, Anaesthesia  for Obstetrics, (for widely available information in usual McGill diagrams) http://web.squ.edu.om/med-Lib/MED_CD/E_CDs/anesthesia/site/content/v04/040302r00.HTM

Cork, R.C., Wood, P., Ming, N.,et al (2004) ‘The effect of cranial electrotherapy stimulation (CES) on pain associated with fibromyalgia’ in The Internet Journal of Anaesthesiology http://www.ispub.com/journal/the-internet-journal-of-anesthesiology/volume-8-number-2/the-effect-of-cranial-electrotherapy-stimulation-ces-on-pain-associated-with-fibromyalgia.html  NB: I’m only including this reference for where I found the fibromyalgia McGill Indexed data, I am not commenting on electrotherapy in any way

Melzack, R. & Torgerson, W.S. (1971) ‘On the language of pain’ in Anesthsiology, Vol. 34, pp 50-59

What I take with me to my doctors appointments

Time and again I have been told by specialists that I am an ‘expert patient’ and, more surprisingly, that I know more about my condition than they do. It’s taken a while for that to truly sink in. But now that it has, I accept the reality and I take control of my end of the communication. It makes sense that I should be able to communicate what I want to. There is no reason not to pass on valid information that will help the doctor to make a more informed decision as it could directly affect my health in a really good way if I do.

Doctors are there to help us, but frontline primary care doctors are trained in general medical knowledge. They have general knowledge about a lot of things so that they can treat us when they can, and refer us on to a more specialist practitioner when it goes beyond their training. In the UK they are called General Practitioners (G.P.s) for that very reason. They can’t know everything about every condition; it just isn’t viable to cram that much knowledge into one human’s brain!

I’ve found that some G.P.s know a bit about my condition, and when I have asked them about it they have always said that they only know anything because they happen to have worked with another patient with the same condition before. And they always say that their first patient with the condition was a huge learning curve for them. So if I’m going to see a doctor who I haven’t seen before I take information with me explaining what my condition actually is.

This is because rare conditions remain on the outskirts with the very-specialists. The new research information just doesn’t reach general practitioners, and why would it? It’s way too specialist for them to keep up with in addition to everything else they have to know and keep updated on already.

It also doesn’t reach doctors who are specialists in other areas. My cardiologist didn’t know as much about my condition as it first appeared, (only the cardio’ aspects and some of the basic ANS involvement), and he very candidly advised me that if I saw a neurologist or gastro-intestinal specialist, that they would not know, either.

So whoever I go to see, I know that they will not have the full picture.

So I can’t expect them to treat me appropriately unless I give them more information.

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The main thing I always remember is….

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Doctors like data.

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It helps them to make informed decisions.

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So it’s simple….

I take data with me.

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Let’s face it, if it’s taken me years to sift through the information online and find out what’s current, what’s outdated, what’s correct and what’s faulty interpretation… then I can’t expect them to figure it out in just a ten minute appointment! So, written information for them to look at is really helpful for them and usually very much appreciated. Not to mention hugely helpful to me in getting treatment appropriate to my condition.

But how best to present this information? Verbally? Take notes with me and give a mini-presentation? In writing? And if so, written by me? Or by some doctor or researcher?

I have had the dubious honour of being the first CRPS patient for various G.P.s over the years. And as a result I’ve come to the conclusion that it’s easier to hand them some information in writing than to try and explain it all myself verbally, (preferably with some sort of scientific journal reference or a web address link to show official endorsement from a relevant medically informed group). Firstly because doctors are trained in facts, and patients’ anecdotes just don’t carry the same scientific weight, (that’s why the scientific references/endorsements are helpful). And secondly because a few doctors sometimes forget that an ‘expert patient’ is actually very helpful, (hence the references/endorsements, again). The scientific references are therefore doubly useful because they present hardcore facts and they scientifically back-up what you are saying to them.

So, I always take an explanation of my condition with me to any appointments with new doctors. I no longer need to do this with my G.P. because he now has the general gist of CRPS and its association with the autonomic nervous system.

But if I am seeing my G.P., or any other doctor, about specific symptoms or ‘interesting’ new developments, then I need to take a little more with me.

I’ve started to back up everything I say with data, because the condition is so unusual when compared with standard medical training. Doctors are used to anomalous issues with organs, but not very familiar with what can go awry when the organs are happy and healthy but the wiring between them and the brain is seriously faulty.

So when I needed to see my doctor about the permanent near-fainting, constant nausea, and disturbing cognitive deficits I gathered information before I went. In fact I did four things…

1. I made a list of all of the symptoms which I was experiencing. I then organised them with the most problematic ones right at the top of the page. Nice and clear. It is useful for the doctor to have it to hand so that they can read and re-read the salient points without having to keep information in their head whilst asking me questions and considering my answers.

2. I also printed off some research papers that I thought might help my doctor as they explained about these sorts of symptoms with my condition. (Never forgetting of course that the symptoms could be something different, I never self-diagnose, that would be very silly as I don’t have the medical training, I simply gather relevant information for the doctor as I do know rather a lot about my condition, and then we discuss what we think it might be and how to move forward from there). So I had printed off a copy of a research paper about fainting being common in patients with CRPS, which included an explanation as to why this is, (faulty ANS doesn’t constrict the blood vessels properly in my legs so when I stand, and sometimes even when I sit, the vessels are too wide and so it takes more blood to fill them up, meaning there just isn’t enough blood left in my upper body including my poor bereft and foggy brain!), and I also took a printoff of a research paper about neurological deficits in patients with CRPS (although this is more general and my cognitive issues appear to be more related to lack of oxygen, but it was as a back-up in case he didn’t know about the effects of ANS malfunction on the vascular system or common CRPS neurological issues, I try to cover all the possible scenarios!). As it turned out I didn’t need either of them, but they were there as back-up all the same. I’ve since shown the papers to my respiratory physio’ instead, who loves new information and was very interested to read them.

3. I also created a list of the symptoms that were causing the biggest problems and at the end of each day I scored my day’s experience of them on a scale of 1-10. I used the basic 10 point pain scale as a guide. Well actually I combined three different descriptions of the same pain scale as they were different ways of describing the same thing! Even though it’s an effectively subjective scale I wanted to express my pain levels as coherently and ‘accurately’ as possible. Here’s what I used…

0 No pain
1 Mild Pain – can be ignored Bearable Mild pain, annoying, nagging
2 Mild Pain – can be ignored
3 Moderate pain – interferes with tasks Mildly painful Discomforting, troublesome, nauseating, gruelling, numbing
4 Moderate pain – interferes with tasks
5 Moderate pain – interferes with concentration Painful Distressing, miserable, agonising, gnawing
6 Moderate pain – interferes with concentration
7 Moderate pain – interferes with concentration Very painful Intense, dreadful, horrible, vicious, cramping
8 Severe pain – interferes with basic needs
9 Severe pain – interferes with basic needs Excruciatingly painful Excruciating, unbearable, torturing, crushing
10 Excruciating pain – cannot function

When symptoms were not pain-based I found that the references to interference with tasks/concentration/basic functions was very helpful at placing my symptoms on a scale.

And as I have a laptop to hand I even created a graph of this info’!

Having a visual presentation of data often shows up patterns we may not have spotted before as well as being a really time-saving way of explaining what’s been happening. If nothing else it’s a really easy way to see how big an issue certain symptoms were, like the near-syncope (near-fainting), which never went below a 5 during the time I was logging the data.

4. I also wrote down and printed off my thoughts on the matter, just in case I jumbled up my words on the day. And I actually ended up just handing it over for him to read. Easy peasy!

And do you know what? My offprints seem to have done the rounds! Originally I saw a locum doctor whilst my doc’ was away. The head doc’ paused the referral until I saw my own doctor, then by the time I saw my doc’ he’d already been shown my printed data. And it turned out that when the referral was made, my symptom list, graphs and summation of my thoughts were all sent off to the neurologist with the letter referring me to him, as they thought it would be helpful for him to see the offprints, as well. Wow! They really were useful!

The one thing that I was really worried about was the length of time it would take me to get referred to a neuro’, who I would then get an appointment with, who would see me and realise it’s not his area, and then (hopefully) refer me to an autonomic specialist, who I’d then have to wait for an appointment with…..

With the symptoms being as severe as they were I was worried about having to endure two separate waiting times to eventually see the appropriate specialist. But…. the offprints gave the neuro’ a lot of information without him actually having to see me in person, and he just wrote a letter to my G.P. suggesting that I get referred to an autonomic specialist instead. It turns out that that’s enough for the primary doctors to go on. The referral is underway. And waaaay quicker than it would have been otherwise.

So hurrah for my new habit of taking info’ to the doctor! It has made a massive difference, and shall be my new way of working from now on.

x