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

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?…”


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)


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

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


“Useful Links” page for fellow patients


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,


Useful Links page

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,


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


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.


The main thing I always remember is….


Doctors like data.


It helps them to make informed decisions.


So it’s simple….

I take data with me.


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.


A non-neuro neuro? It’s probably quantum

Sometimes I get a medical letter through the post that just makes me laugh! Yesterday was one of those days…

If you have looked at my ‘What is CRPS?’ page you’ll know that CRPS is down to the autonomic nervous system (ANS) starting to behave in a faulty manner. And you’ll also know that the ANS is part of the neurological wiring in our bodies. So…. seeing a neurologist is a fantastic idea, second to seeing an autonomic specialist, right?

Here in the UK the primary doctors can’t refer patients directly to the tertiary level specialists, (which includes autonomic specialists). They can only refer to the secondary level ones, like neurologists. I wrote a post fairly recently about my need to get referred to an autonomic specialist here. Well, the update.. is that when I saw my doctor about it, (all prepared with graphs, a symptom list and my explanation of why I need to see someone-who-has-a-clue, all backed up with research papers), he surprised me by telling me that he “thinks it’s a very good idea”! Lawks!

But getting to see an autonomic specialist means that I first get referred to a neurologist, who would then be able to refer me on. Sounds like a monumental waste of time, and the neuro’s agree. That time could be spent seeing patients they can actually help, instead of filling in cursory paperwork.

Nonetheless, that’s the way the system is, so I was waiting to be informed about an impending neurology appointment.

Yesterday, I received a copy of the letter that the neurologist has sent in reply to my doctor. Here’s a quick snippet…

“It was not clear from your letter the link between the previous diagnosis of regional pain syndrome and recurrent autonomic nervous system problems.”

So…. RPS? What happened to the C? Has the neurologist even heard of CRPS? How can he not know that autonomic dysfunction is the fundamental foundation of the condition?

Even weirder…. He’s not a trainee or lower level neuro’ who could almost be forgiven for not knowing yet, he’s a…. (wait for it)…. consultant neuro’…..! ?

Have I been transported to a parallel universe where neurologists are not trained in neurological conditions? Is this possibly an entirely quantum experience?!


Well, it’s either a sci-fi moment, or it’s a regrettably familiar one. *sigh*

What he does say, however, is that my doctor should refer me to the tertiary level dude. Yes. We know. That’s why my doctor referred me to you, Neuro-Bloke. But maybe that letter could be enough? Or does the referral form have to be filled out by the neuro’ himself? I don’t know. But I shall find out.

My doctor is away at the moment and so the surgery have booked me in to see the stroppy odd one. (There’s always one, right?) 😉 So, come Friday morning, I shall trundle off down the road, clutching the letter in my hand, (and probably some research explaining the condition basics, or maybe I’ll just convert my ‘what is CRPS?’ page into a doctor ‘idiot board’? Hmmm, now there’s an idea), and find out where on earth we go from here.

It’s an interesting journey having an esoteric condition. It takes a lot of continued effort to actually get myself visible on the medical radars. Silly, really. But there you go. That’s just the way it is.

The other thing that happened as a result of my last doctor appointment was that I ended up on a brand of Selective Seretonin Reuptake Inhibitors (SSRIs). These are sadly stigmatised as a result of their more widely-known use for depression. Depression itself should not be stigmatised anyway, but unfortunately that’s the way it still is, for the most part. (If I wrote more about what I think on that subject here it’d turn into a lengthy post)! But they are actually used for a lot more than that, for example… pain control (very relevant), …and something I only found out this year, which is that they are used to help try to stabilise the ANS. Oh my goodness, reeaally relevant.

Serotonin levels vary in the brain, and the receptors in the brain pick up on this and react accordingly. It affects the behaviour of automatic processes, including heart-rate variability. And it’s the heart-rate issues that are part of why I feel so close to fainting a lot of the time. Heart-rate goes up… blood pressure drops… near-fainty experience. Although, to be fair, we don’t really know if the increase in heart-rate is causing my blood pressure to drop, or the other way round. It may well be a bit of both at different times for different reasons. The resulting lack of oxygen to the upper body probably has a fair bit to do with the worsening cognitive issues, too.

SSRIs flood the brain with seretonin, leaving the receptors  with no variations in seretonin levels to react to. The ANS becomes more stable, (fingers crossed), and so the automatic processes should stop getting affected so much.

So, seeing as I most likely had weeks (or possibly months) to wait before I got to see the autonomic specialist, and it had got to the stage where my day-to-day experience was truly untenable. I needed something to be done, and I needed it asap. So my doctor ‘bullied’ me (his word) into it a bit, because I have such an aversion to getting incorrectly stigmatised as needing anti-depressants. Anyone with a chronic pain condition will be familiar with the ‘it’s all in your head’ erroneous concept. And getting wrongly labelled as needing medication for depression is the last thing we need on top of the, already appalling, lack of knowledge about our conditions anyway. He has written ‘trial medication’ on my notes and said that was enough. I think that’s too vague. It doesn’t say what it’s trial medication for…. pain control?…depression?… not many doctors will even be aware of the ANS stabilisation factor, so it needs to be there in the notes. Grrr. I want ‘trial medication to try to stabilise ANS’ on there instead, but I don’t suppose there’s much chance of getting the other stroppy odd doctor to amend it for me! (Especially if he finds out he’s being referred to as a S.O.D.)! 😉

I’ll update you on progress in a few weeks, as the brand I have takes about 6 weeks to reach optimum effect. Thus far the summary is: unbelievably awful side effects initially, followed by apparent magic, more recently followed by decline back into spinny-headedness. So I shall wait and see before I pronounce judgement on my own personal SSRI experience.

Well the sunshine is glorious here, (unusually 😉 ) so I’m off to spend my physio’ time sorting out the freshly aired washing. Exciting, eh?!

Big hugs from me,