Staying ahead of our chronic pain symptoms requires that we be engaged in our symptoms every day. Knowing when pain levels spike or when fatigue is better (or worse) is important to staying ahead of autoimmune symptoms. These details are also important to convey to our physicians and other caretakers.
Here are 10 ways to set up an easy, effective symptoms log:
First, decide what you want to measure.
The first step in setting up a tracking system for chronic pain is to decide what you want to learn from all this information. For example, if you want to discern what triggers your pain and what makes it better, then tracking pain levels as well as the day’s activities is important. A good rule of thumb is, track the things your Rheumatologist always asks you about. My doctor always asks, how are you resting? What’s your stress level? How has your pain been? Knowing what you need to track is so very important because it drives every other benefit along the way. For anything to be trackable, it must be something that can be: a) identified, b) measured and c) easily described. Some items are givens for autoimmunes, like sleep patterns, fatigue and pain levels, and the like. There are likely some things to consider based upon your individual disease course. For example, it’s important to me to know that I really try to stay in front of my RA each day, so I write a daily note about my effort and attitude, were they good? Did I give an honest effort? Did I get kind of lazy today? These things are important to me, so I track them and have answered questions about them in some of my doctor visits. Tracking these elements also demonstrates to my physicians that I’m honestly trying to be a good RA patient.
Get a calendar /notebook.
Once you decide what to record and track, get a calendar or notebook for writing everything down each day. I used a weekly setup with monthly pages because I do a weekly overall analysis and use the monthly page to list my doc appointments. This makes it easy to see how many times I went to the doctor in any given month. I like the vertical week outlay because color-coded details line up side by side and you can easily reference progress in a certain category as time goes on. For example, I track how easy or hard it is to get up and get going each morning. This is a known issue for RA patients. I log this in orange because the sunrise and starting each day is an orange-ish color, so that made sense. All of my orange sections line up pretty close, so I can see how things got better or worse as the week went on. My best tip on this one: Get something nice, something that you’ll actually use. I get this one from Inkwell Press every year and the hardbound covers have served me quite well.
Use colored pens/pencils based on a key.
Okay, I’ll admit it… I’m a pen nerd. A pen snob, even. Journaling relaxes me and I rather enjoy using colored markers, pens, and the like. Art therapy is a real thing, and controlling stress is uber-important for pain control, so this works for me. So I devised a color key to use when journaling. When I’m turning back through the pages of my symptoms log, having things line up by color really facilitates finding things quickly, such as in a clinic visit, at the hospital, etc. Here’s the key I use:
Dark blue reminds me of a nighttime sky, so I use a darker blue for describing sleep. How did I sleep the night before? Was it restful? Did I wake up and how many times? Was painsomnia a problem? Did I finally enjoy a good night’s sleep?
Orange is the color of a sunrise, so I log how each days starts in orange. Was I stiff? Did I need some heat to get moving? Did I need help getting out of bed? Was I able to arise with little problem and start my day? How long did it take me to get started?
Green is used for activities I was able to do during the day. Daily achievements are sort of like “getting a green light” from my body to do get some things done, so green makes sense for me here. I track activities like walking, exercising, doing some house chores, resting, going to a park, etc. Knowing what I am able to do on any given day is helpful in monitoring and tracking disease process.
I have Sjogren’s Syndrome and with that comes lots of GI issues. These are tracked in brown. I’ll assume the reasons for this are pretty obvious… if I had GI pain, was unable to tolerate foods, had to use extra GI meds, etc., I write this down in brown and keep track of it.
I use red for any unplanned issues that come up that day, such as needing to take additional pain meds or having unexpected injuries. Red is easy to find and makes finding “gotchas” easy.
Purple is used for musculoskeletal symptoms from my recent injuries. No real reason for this color, except it was left over after the others were chosen. I’ve had lots of stress fractures and surgeries lately, and it became important to track what pain was likely postop or trauma related and what was probably RA driven. So tracking some “MSK” symptoms in purple is helpful in determining usual RA pain from postop issues.
Black is a good baseline color, so I track attitude and grit each day in black. These two things are basic to each day, so black seemed the right color. Tracking these things keeps me honest about really trying each day. We all fall in to lazy, and I’m no different, but having a bad day because my body truly is not cooperating versus a bad pain day because I got lazy and just laid around all day, is important information to know and report to my doctors. Tracking these things also shows my physicians that I really am trying to hold myself accountable for doing what it takes to succeed at a crazy RA life.
So there you have it, my color-coded system. You may choose different colors for different things, but having colors line up when needing to review back on your log quickly is a huge help. I highly recommend doing this.
Designate a time every single day to journal your symptoms.
Logging symptoms in the evening works best for me. It gives me a chance to reflect back on the day while also helping to settle down, relax and get ready to call it a night. Advice to chronics is always to have a nighttime routine, it helps with sleep. Journaling about the day is part of my routine and helps facilitate a good night’s sleep. The point is to pick a time that works for you so you can easily develop a routine. Whatever routine can be consistent is the one you should go with.
Have a designated place for your symptoms log.
The key here is easy-peasy. If you have to hunt for your log every day, you’re not likely to track your symptoms very consistently. Keep your symptoms journal in an accessible place that you come across every single day. Mine sits on the table beside my chair in the living room. Chris and I sit here every night. I’m right-handed and the table is on the right side of my chair, so easy-peasy. Wherever your “spot” is, claim it and use it each day.
Keep your pens in a separate bag or pouch.
It’s a disincentive to track our daily symptoms if we have to dig our pens out from a huge shoebox or plastic bag. Keep this easy – pull out the pens you plan to use and keep them right beside your planner book. Once and done.
Perform weekly and monthly symptom assessments.
Here’s one reason the color-coded system works so well. You likely aren’t going to be looking at every single day’s description, but rather, was this a good week? How was the month overall? Is there a certain activity that triggers more pain? At a glance, you can see all the blue stuff line up so if you have questions on sleep or insomnia, you can easily glance through all the blue colors. Same with activities, or green. If you always hurt worse on Tuesdays and you look at all the green writing, you can see that you’ve been doing laundry on Monday afternoons. So perhaps doing laundry is the culprit for the uptick in pain levels. Weekly and monthly assessments are good things to do, especially right before a visit with the rheumatologist. He or she will likely want to know how you’ve been doing since the last visit and an easy-to-read tracking log is a great tool in knowing how to answer that question objectively.
Track the number of clinic visits.
In the weekly planner/journal I use is a monthly layout for each month. It’s a great place to jot down when I visit the doctor or have to go in for xrays. You can also track when medicines were changed so that you know when you’re 30 days in, 3 months in, etc. This is helpful in knowing which meds are effective at symptom control. If you’re like me, you’ll be surprised at the number of visits you have to make once you actually write it down in a monthly fashion.
Take your journal to all doctor appointments.
Not a lot to say on this one. Take your symptoms log with you to every visit. Even if the provider doesn’t ask any specific questions from your log, he will see that you keep a log and this will show the physician that you’re responsible, accountable, and serious about doing all you can to stay in front of your pain.
Keep your symptoms log handy when dealing with insurance/disability issues.
Besides being useful in clinic visits, my symptoms log has proven useful over and over again when dealing with different kinds of insurance, as well as the disability process itself. Once an insurance company asked me how many visits do I have in a month on average, and it was very helpful to tell them quickly. I was also able to tell them which ones were planned and which ones were unexpected, because I color them differently. For one of my crazier months, I had 16 office visits, 11 of which were unplanned and due to RA flares. This was very helpful information and tracking this information keeps it quickly accessible.
So I hope these tips are helpful and assist in setting up a symptom tracking system for the new year. Be good to yourself and get something that is easy and convenient to use. Otherwise, you likely won’t be consistent in using it. Have fun with the color coding and put something in place that works for you, then keep those pens right beside your planner. Pull them out, log your symptoms, put them away in their spot. Easy. Simple. Effective.
Here’s a link to a Facebook Live video I did on how I set up my symptoms log. Feel free to take a listen and get some additional tips!