What to record in a fibromyalgia symptom journal

If you're living with fibromyalgia, you may have come across the advice to keep a symptom journal or use a symptom tracker.

A symptom journal is exactly what it sounds like: a daily record of symptoms and management. This includes pain, fatigue, “fibro fog” (difficulty with concentration or memory), sleep, and mood. It’s also a place to keep track of treatment, things that make symptoms worse or trigger flares, and how symptoms are impacting your quality of life.

The goal is a better understanding of your symptoms and treatment needs, important information for both you and your healthcare providers.

If you are starting a symptom journal for the first time, restarting a symptom journal after taking a break, or keeping a symptom journal but want some more ideas on what to record, the strategies below can help.

Getting started with a symptom journal

Because a symptom journal can provide important information, your healthcare providers may request a specific format. In this case, follow your healthcare provider’s instructions as closely as possible.

In other cases, the best approach will be the one that works best for you. Some people will prefer to use a pen and paper. Many others will prefer an electronic document or spreadsheet. There are also apps for tracking fibromyalgia symptoms that you can install on a smartphone.

You may want to or need to try several methods before you find the one that works best for you. Be willing to experiment and switch up your approach if you need to.

When keeping a symptom journal, there are two important questions to ask yourself:

• Can you capture the information that you need to capture?
• Are you able to be consistent?

When and what to record

Though the condition is different for everyone, fibromyalgia can include day-to-day symptoms as well as flare-ups. Flare-ups are episodes where symptoms get significantly worse and more difficult to manage.

It’s important to keep track of both.

Keep a daily recap

A recap does not need to be incredibly detailed, but it should contain enough information to be useful when you refer back to it later. Some key information you will want to track:

• Did you experience any pain? Include headaches.
• What was your fatigue/energy level?
• How many hours of sleep did you get? How rested did you feel after sleep?
• How was your mood? Did you experience low moods, mood changes, irritability, anxiety, or other forms of distress?
• How were your concentration, memory, and thinking?
• What did you do to manage fibromyalgia (such as exercise, supportive therapies, and/or medications)?
• It’s also helpful to keep notes on where you went, what you ate, how you felt, and anything that was stressful or out of the ordinary.

Record information about flare-ups

If your symptoms worsen, you experience a flare-up, or you experience new symptoms, you'll want to record as much information as possible as soon as you are feeling up to it. Be sure to include:

• Symptoms. What symptoms did you experience? Did you experience any new symptoms? Include details, such as the location and severity of pain and the level of fatigue.
• Date, time, and progression. When did symptoms begin and how quickly did they progress?
• Treatment. What did you do to manage symptoms and how well did it work? Include medications as well as steps you took to make yourself comfortable.
• Potential triggers. Can you identify anything that might have triggered the flare? For example, poor sleep, emotional stress, or physical exertion.

Following a flare, and especially after the appearance of any new symptoms, you will want to contact your healthcare provider. New symptoms may be related to fibromyalgia or may be a sign of a potential coexisting health concern, and these should be evaluated by a healthcare provider.

Tips to stay consistent

Staying consistent with any habit can be challenging, and having a chronic condition often brings an added level of challenge. Be kind to yourself on the days where you aren’t feeling motivated. If you miss a day, forgive yourself and get back to it the next.

To stay consistent, try to set aside five minutes a day, preferably at the same time each day. Some other strategies that can help include:

• Keep entries small and manageable.
• Set an alarm or reminder.
• Keep your journal in a place where it is easy to access.
• Add it to another part of your routine (for example, write an entry immediately before brushing your teeth or taking a medication).
• Find an accountability partner, such as a family member or friend.
• Remind yourself of why you are keeping a journal and the potential benefits.

Before you go to a healthcare appointment, take some time to review your entries. Use this information to prioritize what you want to discuss with your healthcare provider. A symptom journal can also be a good place to keep track of questions you want to ask your healthcare provider.