Chronic Illness Symptom Tracker – how to use one and why you need to start

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Chronic illness symptom tracking is incredibly useful information to gather and analyze. When you live with chronic illness it can feel like you have a myriad of medical appts.

Those medical appts can become overwhelming and full of information that can seem daunting at the time. Symptom tracking allows you to take some of the control back with your health and better understand what’s happening with your health.

I’ve had multiple chronic illnesses for over 10+ years, so I’m well versed and experienced in the myriad of emotions that comes with medical appts and symptoms. Remember to take care of yourself and seek our advice and support as needed.

My journey with chronic illness symptom tracking

I had a specialist many years ago recommended I take the time to write out what’s happening each day with my chronic illness. Now, every day seemed daunting to me. This was back when I was a teen and the idea of sitting and writing down how I was feeling each day was the furthest thing from fun. So, I did what most teens would do and say I would do it, but my logs were infrequent and sporadic.

Coming up to my next appt with the specialist I remember looking over my log and realizing how sparse it really was. I went and had the appt and the doctor spoke with me about how having sporadic logs was not helpful. They outlined the importance of why I needed to log each flare/event and what it would provide for them. I understood that I had in theory made their job harder.

I went home and started taking it seriously for two reasons. One, I never wanted to have another interaction with a doctor like that one. Two, I wanted to feel better and I was standing in the way of that. This was something I could control, in a world of chronic pain and symptoms I couldn’t control. Why wouldn’t I take control of what little I could and make the most of it? This realization led me to become an avid tracker. I now meet with specialists and have a thorough log even for initial consults. When I have to go to the ER I have a long printed list of everything they need to know. All because of my chronic illness symptom tracker.

Why Track?

Why track your symptoms? What does this accomplish? To be honest, quite a lot! You might be surprised.

When you live with chronic illness, at times there’s little in your control. When and why a flare or symptom presents itself can be confusing and frustrating. It’s common when symptoms first present or your first couple doctors’ appts to feel a lack of control or knowledge.

One of the main reasons I track is to help combat that. Tracking allows me to know what’s happening in my body and start to build a narrative as to why. Triggers – tracking allows you to see what occurs before/during your symptoms to help you identify if there are any triggers or elements that can be causing or worsening your symptoms.

Chronic illness symptom tracking also helps to allow your doctors to have information fast. I can’t even begin to name the number of specialists I’ve brought my symptom tracking. By bringing your tracker to these appts it allows specialists and doctors to know where you are at and what most recently has been occurring. This, in turn, can provide them helpful information with prescribing accurate medication, providing referrals and diagnoses. By attending appts with this tracker, you in turn save a lot of time as well. A lot of specialists will send you off to try different things and then check-in within a couple of weeks. Tracking this allows you to give accurate information that can speed along with different treatments as doctors have a clear understanding from your logs if it’s working or not.

What to record in your symptom tracker?

Each medical condition can be unique, and therefore the symptoms your track may vary. Below I’ll outline some basics and from there you can build what works best for yourself.

With using a chronic illness symptom tracker it’s good to set our parameters or scales for yourself. For example, my pain scale is as follows:

0-2 minor, 2-4 mild disruption, 4-6 most activities are impacted in some way, 6-8 this has severely disrupted my activities, I am unable to complete them and need to rest, 8-10 I am unable to function, likely needing ER trip.

Setting this out ahead of time allows you to give consistent rankings each time. At the beginning of your symptom tracker, I would do this for: Pain & Mood/Energy.

• Start Time – log the time your symptoms started
• Foods/Medications – What recently has been ingested or taken? I try to stick to the past ~8 hours as that’s usually a decent time frame
• What were you doing when the symptoms started – were you sitting, at work, at school, exercising, house work….etc.
• Is there anything that makes it worse/better – when you walk does it feel worse, when you lay down does it improve?
• Mood/Energy Level – what mood are you feeling, what is your energy level
• Medication Taken/Treatment – Dosage Information & Medication name, Type of Treatment
• Pain – Rate on scale from 1-10
• Pain Location – Where are the symptoms located
• End Time – log the time your symptoms ended
• Effectiveness of Medication/Treatment – Log if medication/treatment made a difference and if so, what did you experience
• Pain – rate on scale from 1-10 post symptoms

How to use a chronic illness symptom tracker

Okay, so now we’ve covered why you need to track and what you need to track now what? Well, this is where we track. At this point in my life, tracking has become very second nature with my health. I hope for you and your chronic illness journey this can help you as well become second nature.

With a chronic illness symptom tracker, you want to keep it with you at all times. You can have a physical tracker or you can use an app on your phone. Either way, it needs to be with you all the time.

Whenever symptoms begin, even if mild, you need to start a log. Ensure you go through the whole log each time.

For me, one of the easiest things I forget is to end my log. It’s often I’ll go to bed early (as my medication makes me drowsy) and when I wake, I forget to check back in. I recently started setting reminders on my phone and putting my log in my personal space when I wake to remind myself.

So, write everything, every time! You can keep multiple trackers if you have multiple chronic illnesses or you can keep them together and just categorize or label the differences. When you next visit your doctor or specialist bring your tracker and share it with them, either electronically or physically.

I hope this guide has helped and I wish you well on your medical journey! Wish you many pain & symptom-free days ahead.

Talk soon!