Documentation – a picture’s worth a thousand words


Doctors believe what they see.The training they get and the laws they must follow all reinforce that. If they see it themselves, then it’s real; if they only hear about it, it’s hearsay, which is much less believable.

This is why it’s hard for us, as chronic pain patients with all sorts of hidden issues, not to come off as shrill and demanding: we expect them to believe what we say, and they find that outstandingly hard. It goes against everything they really know.

Therefore, show them. Put it in pictures, put it in print, and watch their expressions change before your very eyes.

sketch of excessively happy doctor running with a hypodermic needle
They should always move with such alacrity and glee πŸ™‚

This is the first in a series of posts about the documentation that I’ve used over the years. I’m starting with the time I got tired of pointing to my arm and saying, “Well, it was like this (gestures) last week and it’s like this (different gestures) most of the time this week. It’s only blue because of the cold.” And then he couldn’t remember what I said it looked like a week ago.

No help at all.

So I went home, put my hand and forearm on a piece of paper, and drew an outline around it. I came up with a set of symbols to show what I needed to track, and marked up the outline accordingly.

As my situation changed from week to week and month to month, I grabbed paper, put my arm on it, drew another outline (I really should have made blank copies), and filled it in with the current state of my arm.

Lo and behold, I hardly had to say a thing. One doctor looked over my stack of images and said, “Wow. They really tell the whole story, don’t they? I hardly need to look at the medical record.” He did anyway, but was pretty quick.

My office visits were a lot more productive after I started keeping those pictures. I called them “snapshots” and collected quite a few of them before the case became too complex and moved into different territory. (More on that later.)

Here’s the key I came up with to explain the symbols I used for the symptoms I had at the time:

6 different scribbles to show 6 different signs and symptoms
key to snapshot scribbles

As you can see, I just scribbled patterns which I found easy to remember. Nothing fancy.

Each sign is distinct from the others, except for the two strengths of “bruising” (I now know that that was CRPS discoloration), which are the same symbol at different densities. Makes sense, right?

Here are the first 3 images, and what made the difference between them:

Baseline, after working as best I could with the injuries:

sketch of hand that shows extensive pain and bruising.
My first stab at this. What can I say? I was a writer and musician, so I took my hands very seriously.

After about 4 weeks off duty, resting and recuperating:

sketch of hand showing very little pain or discoloration.
It took 2 weeks just to relax, but I succeeded.

After 1 single week back at work on restricted duty:

sketch of hand showing pain and discoloration going further up the forearm than ever before
Yeah. Sucks, huh?

That doctor was right. They really do tell the whole story.

See how easy that was? πŸ™‚ All it took was a pen, paper, and a few notes.

Here are some tips:

  • Put the date and your name on every single one, always.
  • Be consistent about how you label things. They don’t need to learn different labeling systems, they need to learn your case’s course over time.
  • This is a good place to note your pain ratings.I annotated my snapshots with current pain range (at rest and on exertion), bullet points and narrative notes, but it took awhile to learn to keep those annotations very short and to the point.

I scanned all the snapshots into my hard drive, so I can recreate these at any time. I find it very useful when breaking in a new team, because the story told by my first few years of pictures really does tell the key parts of those first few years. They “hardly have to look at the medical record” to understand — and remember! — what happened.

Plus, you clearly don’t have to be an artist to make these pictures accurate and useful πŸ™‚ If tracing around your own limb is too painful or awkward, there’s no reason not to ask someone else to do theirs. Alternatively, you could take a photograph and use image-editing software (available with your camera, or for free or cheap online) to mark the image with your signs and symptoms.

There are lots of ways to get these images going, with any set of tools. And boy, are they ever worth it.

As a point of interest, the freeware I use for editing images is called Gimp. Perfect tool-name for someone like me, eh?

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8 Replies to “Documentation – a picture’s worth a thousand words”

  1. I was diagnosed w/ CRPS type II, at the age of 31. I’m a single (divorced) mother of two amazing little boys! I was going to College for Biology & Environmental Science at the University of Green Bay Wisconsin, no longer:(
    I was working 4 jobs! My dream job at The Cofrin Center for Biidiversity, managing forests and on worldwide research projects to online birder certification websites! I also worked with preserving specimens as well!
    Then came my wrist surgery after helping a friend with a car seat for her son.
    Now…I’m still waiting on disability as I haven’t been able to work for 2 years now. My car got taken away, there has been a family law matter against the other side for abuse to my 6 & 7 year old little boys, I could continue about the knee replacement they would like to do now as well:(. I’ll stop.

    I’m allergic to all the meds, I’ve had all nerve blocks. I’m seen monthly at the Mayo Clinic, we are becoming stumped. I am currently on fosomax. It has been aprox a week and my chronic migraines are gradually coming back, my sinuses are plugged, I feel lightheaded. Yet, I must take care of my babies and Finnish my dreams? How? I’m hurting as I have NOTHING that has worked.

    Please help?!

    Allison

    1. I’m obviously not in a position to help you with your case, but it’s clearly time to sit down with someone senior at Mayo, go over your history and your meds, and do some serious strategizing and prioritizing. You have to be able to take care of yourself and your kids. And remember that your body can’t make things, like bone or neurotransmitters, until it has enough of the raw materials to do so; Mayo is supposed to be on the ball about nutrition and supplementation, so make that part of the conversation.

      Don’t give up on yourself. Don’t let your docs give up on you.

  2. Wow, this is fantastic, when ever I end up staying in hospital I am bad It is very hard to remember what or when I did things that escalated to the point of needing to stay in hospital for 1-2 weeks. xxxx

  3. Ty I’ve had RSD/CRPS for 24 years. Going to use all this information. It was very kind of u to share with all of us

  4. Great post! And great idea!
    The things it takes to get a doctors attention.
    I have CRPS2 as well.. It started in my right foot after breaking it. But now it’s in both feet…up to my thighs.

    Something I HIGHLY recommend is an app on your phone called the “My pain Diary” app. The Creator actually has CRPS, so he knows exactly what needs to be recorded and what to do with it.
    If you’re going through a flare, you add an entry. Each entry, you select the areas effected, all of the different horrible pains you’re going through (burning, pins & needles, frozen,etc). Then you check off what it looks like ( Red/Blue/purple/etc…Swollen, spasming,sweating,etc).. Then you check off treatments you tried, to help with the pain(meds,rest,elevation, etc)
    And a couple other things.
    At the time you do the entry, it records the weather(including the barometric pressure), and you can add up to 3 photos per entry.

    That’s not even the best part!
    He made it so each entry is saved and you can have your records emailed to anyone! Yourself, your doctors,etc.
    He also takes your data and puts it in a bar graph, so you can see what your possible triggers are, how often & how severe the flare was. The email includes whatever info you provide in each entry, as well as any photos you attached.
    This app can be used for multiple health conditions.
    Even multiple conditions for 1 individual. You’d categorize it by color. (Ex: CRPS=Red, Fibro=Purple, Artritis= Green, Migranes= pink)
    So, if you had to record a CRPS flare, you’ll choose the “red” tab, if you were having a bad migrane and wanted to record it, you’d choose the pink tab.
    It sounds like it takes forever just to do one entry, but it only takes a minute, at most! (The first time might take a couple min. So you can costumize it).
    I swear by this app, and my doctors love it bc it helps them keep track of how I’ve been through out the month.

    You should turn your “entries” into some kind of “book for CRPS awareness” type of thing. Since it shows the progression and everything! πŸ™‚
    I have a blog dedicated to sharing my life with CRPS too. If you don’t mind, I’d love to share your series! My blog is http://www.hopeforyourcause.org πŸ™‚

    I hope your having a low pain day!
    Love,
    Heather Lynn
    Hope4yourcause [at] gmail.com

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