How (and why) to track your systemic mastocytosis symptoms

The symptoms of systemic mastocytosis (SM) may feel like reaching into a grab bag: the symptoms you experience, how bad they are and what triggers them varies widely from person to person and can change over time. Symptom triggers can be almost anything — from something physical with your body (like a spicy curry for lunch or lack of sleep) to something you feel (stress from a long day) or something in your environment (a hot car or springtime pollen).

Since at any given moment you’re likely experiencing a mix of physical factors, feelings and surroundings, narrowing down exactly which ones are triggers for you can take time. Was a flare that started on your way home from work triggered by stepping from your air-conditioned office into a humid afternoon, by the stressful commute or by the air freshener in your car?

Only time — and a detailed symptom journal — will sort out the answers.

What to include in your symptom tracker

When it comes to tracking symptoms, more detail is usually better: The more information your record about possible triggers, the easier they’ll be to identify. Be consistent, detailed and honest when recording your symptoms.

Here is what to consider recording:

The basics

• The date and time symptoms started.
• A detailed description of symptoms and the part of the body affected.
• How severe your symptoms were.
• Likely potential triggers.

Details of possible triggers

• What you were doing when symptoms began.
• Anything you recently ate or drank
• The weather: Temperature, humidity, pollen count.
• How you were feeling emotionally.
• Name, dose and timing of medications you’d recently taken.

How your symptoms resolved

• How long your symptoms lasted.
• Anything you took or did to help control the flare.
• Any other relevant information or context that might help understand the triggers.

Listening to your body

Symptom flares (and the triggers that bring them on) are different for every patient. Symptoms depend on where abnormal mast cells accumulate in your body and what mediators they release, among other factors.

Learn more: “What people with mastocytosis should know about mast cell mediators“

To comprehensively log symptoms, you’ll need to learn to scan your body and describe everything you feel, which might be challenging if one bad symptom is taking most of your attention. Try to pause and consider all of these areas:

• Skin: Rashes, flushing, itching, swelling and hives.
• Digestive: Cramps, stomach pain, nausea, bloating, diarrhea and vomiting.
• Respiratory: Breathlessness, wheezing, throat swelling.
• Cardiovascular: Irregular heartbeat, palpitations, lightheadedness and dizziness.
• Neurological: Brain fog, headaches, anxiety, difficulty concentrating, mood changes and depression.

Where to record your mastocytosis symptoms

Choose a system that works for you and that easily fits into your routine with the least amount of effort. There’s many options to choose from:

• A symptom journal in a notebook.
• An electronic document, such as a Word document, Excel spreadsheet or Google doc.
• A symptom tracking app on your phone. Some have even been developed specifically for mast cell diseases.
• Voice notes with a transcript saved to your smartphone.
• Symptom tracker templates, such as those offered by the Mast Cell Disease Society and Mast Cell Action, that you can print out or save to your device.

Finding the patterns

SM triggers aren’t always straightforward, so it may take time to spot patterns and realize exactly what causes symptoms.

Sometimes, symptoms aren’t caused by one single trigger, but by several triggers at once. This is often called the histamine bucket theory. According to the theory, the body’s tolerance for histamineHistamine A chemical released by mast cells when they are activated. Histamine causes many of the allergy-type symptoms in mastocytosis, including flushing, itching and hives. can be thought of as a bucket. Each trigger that increases histamine adds a little more liquid to the bucket. When too many triggers happen close together, the bucket can overflow — and symptoms start. This is where having all the details about what may have caused your symptoms can be especially helpful.

Share your symptom diary with your healthcare team

As well as identifying your symptom triggers, self-reported symptoms can help guide decision-making for your healthcare team.

Have your symptom log handy so you can share it with members of your healthcare team at each appointment. This isn’t limited to your primary care doctor or SM specialist: A dietician may have insights on food triggers, and in some cases your pharmacist can help evaluate symptoms that might be from a new medication and provide guidance on your next steps.

Save your older symptom logs as part of your medical records.

Learn more: “Why routine monitoring is key in systemic mastocytosis care“