Hi, friends! I’m excited to be back with a new post today after 2 weeks in between posts due to my infusion. Thinking about my infusion and how I’m on half the dose that I was on due to COVID-19 and my history of severe infections made me think about the many times I’ve kept a journal of symptoms for a variety of reasons, which then made me think about why I’ve done that. I decided to write a post about how you really have to track symptoms, whether it’s for chronic illness and/or chronic pain, and to pull together a free printable symptom journal for you guys.
Keep reading to see why you really need to track your symptoms, advice for tracking them, and to get the free 4-page tracker.
Why You Must Track Symptoms of Your Chronic Illness
Doctors will ask you to do this anyway – This is a practical reason why you should do it; in the first 11 or 12 years of my symptoms, many doctors asked me to do it. In recent years, doctors and other members of my medical team have asked me to do this if I develop new symptoms. So you can do this in advance of doctors asking you or when they ask you to do this.
You can prove to them what you’re saying – If you’re like me, you’ve also had plenty of medical professionals not believe you. Keeping a record of your symptoms can prove to them a couple of things. One, that you’re dedicated to figuring out your health. You would think that is obvious, but annoyingly it isn’t. But tracking your symptoms over a week or more shows dedication. Two, that you are experiencing what you say you are. Some symptoms can be tracked by machines, but not all, especially not pain and fatigue. When I was in the process of getting my POTS diagnosis, I wore a holter monitor for 48 hours so there were 48 hours of heart rate data. But even then, I had to keep a journal of my activity over that 48 hours so we could connect activity with heart rate. I didn’t have to note everything I was doing, but when I was active, when I was sleeping, etc. Three, that you are experiencing your symptom as frequently you are. It is easy for many doctors to say that we’re exaggerating how frequently or intensely we experience our symptoms. But we know that we’re not exaggerating, and one way to help convince others is to keep a journal of them.
Tools for pain management that aren’t medications
It can help you to realize patterns in your symptoms – This is one reason why you might track your symptoms without being asked to do so! If you’re feeling stuck in figuring out what is impacting your symptoms, or you have no idea what is helping or hurting, tracking can help you see patterns that you’re not noticing in your day-to-day experience.
You might learn a specific food or activity is exacerbating your symptoms – This is very similar to my last point! Let’s say that you are all out of things doctors can do to help you; maybe your doctor can’t prescribe another medication for your symptom, or you can’t afford a therapy or treatment. Basically, you’re trying to know more about what is causing, hurting, or helping your symptoms. Tracking them can help you figure that out.
Chronic illness advice: resources for the newly-diagnosed patient
Advice To Help You Track Symptoms
Do it for a minimum of a week, if not for a month – The point of tracking your symptoms is to see patterns and figure out what could help or increase your symptoms. So if you do it for a few days, you’re not going to get a good picture of reality. It can definitely be hard to remember to do this when you start, but it’s SO necessary to do it for at least a week. And if you can remember to do it, I would really suggest doing it for several weeks. While a week is better than three days, it’s still only a slice of life. I’ve had bad weeks that aren’t necessarily indicative of baseline symptoms!
Be completely honest – There is no point in tracking your symptoms if you’re not going to be completely honest. Whether it’s because you don’t want to be sensitive to a specific food or you want doctors to take you more seriously, you’ll only be hurting yourself and your health if you’re not honest about your symptoms.
Chronically ill tips: what to do when a doctor isn’t listening to you
Set a specific time of the day to do it – When you do it will depend on what you’re tracking, but it’s easiest to keep up with it if you set a specific time of day to do it. If you’re tracking sleep (or lack thereof), it makes sense to do it immediately after you wake up. If you’re tracking activity and pain, it makes sense to do it at the end of the day. Whenever you do it, it’ll be easier to stick with it if you do it generally at the same time every day. I especially advise setting an alarm or reminder on your phone to remind you.
Find a method that works for you – For me, this comes down to paper versus electronics. I’m very much a paper person, as well as a paper planner person. Because of that, it’s easiest for me to keep track by just writing quick notes in my planner, especially because I’ll bring that to my medical appointments, anyway. But maybe it’s easier for you to keep track on your phone, either in notes or in an app. What works for me might not work for you, and vice versa. And what you start out with might turn out to be hard for you to stick to! It’s all about what works for you; no one else benefits from doing this.
What to do when chronic pain becomes too much
New Freebie To Help Track Symptoms
A while ago now – maybe just a month or two, but it feels like longer – I asked on my Facebook page what freebies you guys might like. Someone requested a symptom journal! I’ve made some in the past, but none of them recently, so I decided to make a new one. And this decision was helped by thinking about my infusion.
I’ll be the first to admit that it’s not the prettiest. But it is extremely functional! This document is 4 pages, and I didn’t intend for it to fit for every person who might want it. Maybe it will for you! Maybe it won’t. All pages are designed for 4 weeks. A theme is definitely pain, but you could use it for other symptoms, too.
So here’s what the pages are:
Page 1: Pain (1-10), 1 word to describe it – While I hate the 1-10 pain scale, it is how most doctors ask you to describe it. I’ve included 1 word to describe it so that you can be specific about the type of pain. A 5 that’s dull isn’t necessarily as bad as a 5 that’s sharp, for example. This is helpful because you can show a doctor what your pain is like on average over the course of a month or even just a week. Here are tips on how to describe your pain.
How is chronic pain different from acute pain?
Page 2: Fatigue (1-10), hours slept at night – This is so when a doctor asks you how bad your fatigue is and then how much you sleep, you can be like, “See??? My fatigue is a 6 out of 10 and I slept 10 hours. That’s not normal!”
Page 3: Pain (1-10), hours slept at night – You could use this to share with your medical team or just to show yourself if there’s a connection between how much you sleep and your pain levels. There definitely is one for me!
What you need to know about living with chronic pain in the winter
Page 4: Pain (1-10), foods eaten – I didn’t do the best job providing you with enough space to include all the foods you eat in a day, so you could keep this journal for a week and use all of the columns for all of your meals or for a month and just include the foods you’re suspicious of. While there are some foods that people with different conditions generally are all intolerant to (such as gluten), a lot of times, it depends on each individual person. This page could help you figure out what foods affect your pain personally.
For the first time in a while, I’m not requiring people to sign up for the newsletter to get this printable! Just click HERE to get it. But if you want to sign up for the newsletter, you’ll get access to ALL freebies I’ve ever made. Sign up here.
Have you tracked your symptoms before?
Like this post? Check out:
The Impact of Chronic Illness on an Individual, Beginner’s Guide: Rheumatoid Arthritis Flare Up, How Chronic Illness Affects Relationships, Arthritis Glossary: Frequently-Used Words
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
This is SO true and something I really struggle with keeping up with!! I love your tips for having a set system in place such as tracking your symptoms at the same time every day and in the same format. I think that can really help to stay accountable!
Can you tell I came up with that piece of advice after failing and failing and failing …?
This is something everyone should do. I started 4 years ago keeping a daily pain log. It has come in handy several times. Proof of what I am going through. I also color code each day. Blue for light 1-2 pain yellow for moderate 3-5 and red for high 6-10. Each day is always a combination of all three. The color codes let the doctor see how each day progressed pain wise.
I LOVE the color-coding! I personally really can’t handle constantly tracking my pain because it makes me sad to look back at a month. But it’s definitely something I’ve thought about doing for other symptoms!
Thank you so much for sharing. I was in a bad car crash last year and tracking my pain from my neck injury was crucial because I had so many doctor appointments and physical therapy sessions. Going to bookmark this!