Is Symptom Tracking Your Road Map to Better Days?
If you're living with fibromyalgia, you'll know first-hand how the experience forces you into constant symptom tracking. What’s this niggle? Is this new? Does this relate to something I did? What’s going on?
Sound familiar? It's an exhausting thought process and it can keep you spiraling in confusion. Being too focused on symptoms (especially when you’re already living in a cloud of fatigue) can perpetuate ongoing fear and catastrophizing. This can lead to a continuously reinforcing worry cycle in which focusing on the pain actually makes it worse1.
However, having a good handle on your symptoms can be very beneficial. A comprehensive understanding of your symptoms can guide you and your health team to the optimum type of care – tailored care. If you can develop simple habits to manage symptom tracking and get into the swing of it, the relief alone can significantly reduce pain and stress levels.
Imagine if you can let go of nagging details by being confident your symptoms are well-documented, in a safe place and being used as your road map to better days. This is possible!
Why track your fibromyalgia symptoms?
Getting a diagnosis and the proper care from your health providers will only happen if you provide the full picture of your experience – the symptoms, the impact, the whole deal! No two patients experience fibromyalgia in the same way and there is no one-size-fits-all approach, so being able to say, 'It hurts, I'm tired all the time, I can't sleep!' will only attract general health information – you would have heard it all before.
Patient-centered care is a term the healthcare industry recognizes as a gold standard. It's care that is designed to fit your lifestyle based on your unique symptoms and place you at the centre of your care, so your team works around you... not the other way around. Symptom-tracking is a way of catching the day-to-day information that leads to this patient-centred care. It's almost puzzle-like; you hold all the pieces, and healthcare providers pop them in their place to restore that magnificent picture of you, or perhaps, a new version of you.
What are the benefits of tracking symptoms?
Is it worth the effort and the hype? Do you need this added thing to do? Is getting symptoms out from your head the answer?
Symptom-tracking can help you to:
- be prepared for your appointments and help your whole healthcare team – a pain specialist, physiotherapist, psychologist, coach, massage therapist, GP or whoever else you see – to diagnose you and provide ongoing, tailored care
- eliminate the burden of remembering every detail and symptom
- identify and compare changes over time, especially if you have multiple symptoms and comorbidities (different conditions at the same time), or symptoms that vary with other life changes such as your menstrual cycles, stressful times, different seasons and so on
- identify triggers that cause your symptoms to flare, and positive glimmers that make you feel better
- get support through big life changes such as pregnancy, work challenges, moving house, loss and other stressful events
- feel validated – no one will be able to tell you ‘It's all in your head’ because you’ll be able to prove it’s not!
- feel more in control and empowered.
Track your symptoms easily & effectively
The way we each experience fibromyalgia is unique and so too is the way we each manage and get treated for it. So symptom-track in whatever way best suits you.
I am a journal lover! I keep a daily journal, documenting and sketching. When I first began symptom-tracking, I looked for the right journal to get me motivated. I’m inspired to buy a journal when I look at its cover, the paper type (how it feels), colors/patterns, weight and size (of course, nothing too heavy!). You may want to choose a journal that makes you feel good when you look at it (like I do!).
You might want a few journals, one beside your bed, one in the car, one at work, one at home… the bathroom is a great place to have a journal! But remember you’ll have to collate the info later – so document the dates and times.
There are many app-based symptom trackers. It’s important to do your homework and explore which best suits your needs. Most importantly, check that the app is up-to-date with security and privacy settings first before you compare features and ease of use. I love the convenience of an app that I can use on my phone or some device within reach.
What symptoms do I include?
Hint: All of them!
You’re aiming for the best approach to fibromyalgia. It’s a whole-person approach called the biopsychosocial model. It’s you at the center of your care. Your whole life experience forms the basis of your tailored care – understanding and being able to communicate this with your care team has been shown to be critical in effective pain management2.
Consider how wide-reaching the symptoms of fibromyalgia are, we realize the importance of the insights symptom-tracking provides. You can’t document too much detail.
Symptom-tracking starts quite big but I promise it gets to a point where you just don’t need to do it much at all. Once you get a good visual of your unique experience and start seeing triggers – the pacing ideas will pop! I symptom track far less now that I did at the start because the process has helped me out of the depths of pain.
Initially, an easy approach might be to track what happened in the 24-48 hour period prior to a flare or heightened pain/symptom effect. For example, did you walk, work, drive, lift something heavy? Were you exposed to loud noise, bright lights, a busy environment? In a personal experience, vibrations through the concrete floor when my neighbors were building triggered a bad pain flare for me! I would have forgotten this had I not noted it down.
How about new shoes? What were you wearing – firm clothing, loose clothing, what fabric was it? Were you happy or sad, stressed or excited? Were you hot, were you cold? What activities had you been doing? What did you eat or drink? What were your toilet functions like, could you have a UTI (extra ouch!)?
Remember, this new habit is about backing yourself and forming a historical reference because symptoms can be erratic and finding patterns can help to support you and your recovery. You don’t want another burden. And you don’t want to do this forever. The easier you make this, the more precise symptom-tracking becomes and the more effective it will be. The aim is to figure out the triggers, gain your balance and then move forward, refining your activity as you go.
The first glimmer of hope I saw after I started symptom tracking were my scales swaying less manically. I identified the bad triggers and the good triggers. I reduced a couple of the bad triggers (being in the car, sitting too long), and made sure my good triggers were a focus (sleep had to be perfect, I never sat without a cushion) and my scales began to stop swinging madly. I was regaining my balance, coming out of boom/bust and I was moving forward!
Remember, you are the expert in your life and this experience. You're the best person for this job. Would you prefer to be judged by those pain scales! Is there anything more insulting?
Symptom tracking in action
Meet Flora, she is a fictional 38-year-old living with fibromyalgia.
Flora tracks her symptoms across the week, morning, afternoon and evening for each day. In her notes, she includes, what she was doing, her emotional state, what sort of symptoms she has, where she has them and what (if anything) helps to relieve them. She also includes a note about her menstrual cycle (hormones and pain – good thing to pinpoint because they interact – and often, not in a good way!).
Flora can choose to share this information with a friend or family member and she takes it to her healthcare appointments – it is an excellent insight for anyone wanting to help Flora! Knowing more about her day-to-day life can also help form a greater connection between her and her team, and it relieves Flora of carrying such a heavy load of information.
So, why not give it a try and power up by symptom tracking!
Where to next?
Do you track your symptoms? Have you had any exciting discoveries or revelations in doing so? Are you unsure or have questions or concerns? Feel free to join our online supportive ‘Living Well with Fibromyalgia’ Facebook community to continue the discussion.
About the author
Soula founded My Health Story – a symptom-tracking app that is like a CV of your health story that syncs across all devices and allows the collection and private sharing of symptoms with healthcare teams and other support people in one central, secure space. Soula has used My Health Story to track her own symptoms for years.
Soula combines her years of living with chronic pain and professional creative communication experience to advocate for a better quality of care. In addition to presenting at medical conferences, Soula has self-published a book, appeared in an award-winning documentary and established the website pudendalnerve.com.au.
Soula offers her personal story on the website as well as many resources to help with the endurance and treatment of chronic pain. Soula's most outstanding achievement is founding My Health Story, an engaging, safe and innovative way for patients to generate and store their personal health experiences.
