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

Strength and weakness

Many people have said to me “You’re so strong, I just don’t know how you do it”, and then they go back to their own everyday lives and I carry on with mine.

Am I strong? Or am I just dealing with the hand that I was dealt?

When you’re living every day with symptoms that cause severe pain and severe lack of function you have to find the strength from somewhere to just keep battling through the days. The experience of living with a chronic condition is so completely and utterly relentless that it is all too easy to end up steamrollered into the ground.

So yes, I am strong, but it’s because I have to be. There’s no other way I can live with my condition. I cannot have a break from it. I cannot let up for even one day. It is a full-time and round-the-clock job trying to keep the balance between some level of function and terrifyingly severe levels of pain and autonomic distress.

You’ve probably heard the term “CRPS Angel”, well here’s my own Marvel-esque version 😉

Do I ever get used to it?

Yep, I do actually, but only in the sense that I can’t really remember what the experience of everyday life was like before I became chronically ill. This is my reality now.

But don’t make the mistake of thinking that means that everything is okey-dokey now. It’s just as hard as it ever was, it’s just as relentless and just as upsetting. But it’s one of those things in life where it doesn’t get ‘easier’ as such, I just developed new skills and ways of coping with it all. I’m good at dealing with the health stuff that I have come to terms with. But it’s a continuous balancing and re-balancing act because, as much as I’ve developed skills to cope, I have a progressive condition.. so just as I think I can just about handle this, another new deterioration occurs and I get knocked off kilter again.

So it is not a solid strength, it is a flexible strength. It has to be. I never know what’s around the next corner, but whatever it may be, however shocking or upsetting, I have to react as calmly as I can or my nervous systems will go haywire rendering me physically incapable and cognitively incompetent. Whereas, if I deploy my range of skills the moment trouble hits I then stand a chance of reducing the negative effects to some extent. I also have to employ skills in how to claw my body back to its usual levels of physical ineptness and my now standard levels of brainlessness.

Strength and weakness seem like fairly straight-forward terms, but they can be used in different ways.

For example, the first thing that I think of when I ask myself what my weakness is…..  that I have a weakness for tea!

In more real terms I have a physical weakness because I cannot exercise like I used to (no aerobic exercise at all anymore, unless a fight-or-flight induced fast heart-rate making me come close to passing out counts?)! And my body doesn’t work the way it should in things like getting the oxygen to places it’s needed.

In emotional terms I am strong because I have to be, but if someone I had never thought would ever hurt me tells me that they think something bad of me then it’s not just the wonky fight or flight that’s the problem, it’s also the down to earth human emotional response as well. I guess that is simply a mixture of being neurologically compromised and of being human.

Distraction tools!

A big strength reducer can be when we lose people from our lives. Nearly all of the fellow patients I’ve met have problems with loved ones not understanding their condition, and when the neurological changes start kicking in before we are actually aware of what is going on.. that is one of the trickiest times for misunderstandings because they can pass over our heads like they never happened. And when we find out afterwards the shock is indescribable. We wished we’d known or realised or understood at the time, but we missed stuff. That’s all there is to it. But whole relationships can be lost over this transition period. And the loss itself can make us weaker, too. Not just the loss of colleagues, friends and even family, but also of a work life, a social life, and more besides. Our lives change so utterly that the change is hard to come to terms with. We have to fight harder to battle the grief of loss and, in the case of misunderstandings, lack of comprehension about what’s happened as well as all the rest of the usual everyday chronic illness stuff. At those times we tend to go under for a while. When I went under I resorted to discovering Magic Dude’s games console! Getting lost in a game was the only way I could distract my mind from the emotional distress and pain because the game continuously demanded my attention. Strength and weakness play their parts, and not all ‘weakness’ is bad or unusual. It’s all change and we work our way through it to come out of the other side.

With greater knowledge of our condition comes a type of strength, because it brings us more control in the sense that we don’t have to float about floundering as much any more. We can explain to our loved ones what’s happening and why we don’t always understand things, why our condition affects different parts of the body, why it’s neurologically based, and so on. We can source and print off research papers to help our doctors understand what we have learnt about our condition, (after all, we are learning about an area which is more specialist than they are used to). We can be advocates for our fellow patients, sharing our knowledge, sharing the sources of information, and understanding what we each are going through which reduces the isolation of the fight. And in reducing the sense of isolation, we feel stronger still.

But we are only human, we don’t have endless wells of strength to draw upon any more than anyone else has, but somehow we have to find a way to keep going.

So I use humour and general silliness! I laugh at the ridiculousness of the developments, even as I feel like crying. Sometimes I’ll be crying and yet also still laugh at the ridiculousness of it all. I take the mickey out of myself, I laugh at stuff on TV, at daft mis-marketing on adverts, at things that Magic Dude comes out with, and at him when he has a rant (he rarely does a serious rant, comedy rants are far more fun!), I come out with stupid comments to make him laugh too, and I’ve developed a bit of a skill in comedy rants myself. Then of course there’s the laughing when the tremors occasionally get so bad I miss my mouth, or scatter my coffee liberally across the floor. And when I come out with wrong words, mixed-up words and non-existent words. I laugh when I can easily find long and complicated words but can’t find a word for something really ordinary. I laughed at Magic Dude’s expression when he saw how orange the coat was that I wore for my CRPS Awareness physio’! (tee hee) And if I didn’t laugh I’d struggle a lot more. It’s the laughter that keeps me in touch with who I am without this disease, and how I was before it. It’s part of what makes me ‘me’, so I grab every opportunity I get. Laughter keeps me strong, it helps me to keep my perspective and to distance myself from troublesome things enough to keep on going.

I’ve said it before and I’ll say it again… tea and silliness rocks! 😉

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.

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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