Start a symptom journal, and solve a mystery

by Carolyn Thomas   @HeartSisters    June 30, 2019

I regularly hear from Heart Sisters readers who contact me because they’re having distressing symptoms that might be heart-related, and they want me to help solve the diagnostic mystery. (Please don’t do this, by the way. I’m not a physician so cannot comment on your specific symptoms. That’s all I will be able to tell you if you ask for a medical opinion). But besides my standard “See your doctor!” advice, there’s one thing I do recommend to readers worried about strange new symptoms, and that is simply to start a Symptom Journal

Here’s how it works:  

When puzzling symptoms appear, start monitoring  the following:

  1. Date
  2. Time of day
  3. How long symptom(s) lasted
  4. Descriptions of symptom(s): e.g. location(s) in the body, severity, quality of pain, etc.
  5. Triggers (what you were doing/eating/drinking/feeling in the hours leading up to the onset of symptoms – and even weather changes)

This little list might begin to offer surprising hints to share with your physician. Often, a pattern begins to emerge that just might help to solve the mystery.

A small example: I recently developed weird, random stomach cramps out of the blue (as if I really need one more thing to worry about!)  Sometimes they happened while out with my walking group, other times when I was driving the car or writing an article, but it was through my Symptom Journal that the clues started to make sense:  these cramps would predictably flare up only on the days I’d had oatmeal for breakfast.

But was it the oatmeal itself? The pumpkin seeds? The blueberries?  It was only when I started experimenting with eliminating, one by one, and finally substituting almond milk for my regular milk on the oatmeal one morning, that the mystery was solved. The only milk I consumed was with oatmeal. So now, no more problems eating oatmeal!  (By the way, if you’ve recently been hearing that this traditional breakfast favourite of grandmothers and dietitians alike is now our enemy, read this).

North Carolina family physician Dr. Bryan Hodge also recommends tracking symptom details, as he wrote in the journal, Family Practice Management:

“Making sense of the disorganized details of the patient’s history is often limited not only by time available at the appointment, but also by the patient’s insight, recall bias, and anxiety. One strategy for improving information-gathering during the patient encounter is the use of symptom diaries.

“A general symptom diary can also allow more focus on the patient by obtaining critical aspects in a presentable, concise format.

“Fatigue and pain symptoms are unique and personal experiences for patients. Reviewing the diary directly with the patient validates his or her complaints, demonstrates caring and trust, and provides an excellent foundation for setting reasonable expectations.

“This enhances the therapeutic relationship with these patients, who may be perceived as being difficult. Identifying the ups and downs associated with their problem can also help illustrate the course of illness and promote patient resiliency.

“The amount of time it takes a physician to review a one-page diary is substantially less than the time it takes to verbally interview a patient for the same information. Symptom diaries can create a more thorough history, which also has the potential to limit unnecessary lab and medical imaging testing.”

Recently, I heard from a blogger at Sick With Optimism who is living with a number of serious autoimmune disorders. One of her sanity-preserving (and possible lifesaving) tools is her own notebook.

While some patients may choose to record medical notes on a phone, she prefers writing in an old-fashioned notebook – and not just for recording symptoms, but for all kinds of important health-related issues.

Consider her To-Do advice before each medical appointment, published originally on her blog:

“I was using my phone for these notes, but in the end, they weren’t easy to organize. And if you have an advocate helping you out, it might be difficult for them to understand and use the applications on your phone. That being said, the phone has been a great place to calendarize appointments and lab tests with advance notification reminders — It can get very confusing if you don’t keep careful track.

“Keep a specific notebook that you or whomever you ask to help you can keep chronological notes in. Keep the notebook with you. That way when you think of a question, you can write it down rather than relying solely on your memory.

The “Sick With Optimism” blog post includes one more useful tip for starting your own  journal:

“Your notebook is the reality: questions, symptoms, test results, diagnoses, appointment dates.

Now do one more thing to help yourself. Write down things that inspire you towards optimism: quotes, the title of a book or blog that is recommended to you, a website or Youtube channel you want to explore later, or a good deed that you did or plan to do.”

Q:  Do you carry a journal or another item to record your medical notes?

.

NOTE FROM CAROLYN:   I wrote much more about cardiac symptoms in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20%off the list price).

ANOTHER NOTE FROM CAROLYN:  Please do NOT leave a comment here telling me about distressing symptoms you might be experiencing (re-read the first paragraph to learn why).

See also:

This is NOT what a woman’s heart attack looks like

When heart attack symptoms disappear – and then return

Heart attack: is it a clogged pipe or a popped pimple?

Skin in the game: taking women’s cardiac misdiagnosis seriously

Women’s early warning signs of a heart attack

Hysterical female? Just anxious? Or heart attack?

Researchers openly mock the ‘myth’ of women’s unique heart attack symptoms

Am I having a heart attack?

Time equals muscle during women’s heart attack

Women fatally unaware of heart attack symptoms

Is it heartburn or heart attack?

What is causing my chest pain?

Heart attack misdiagnosis in women

Why does your arm hurt during a heart attack?

14 thoughts on “Start a symptom journal, and solve a mystery

  1. WOW, what a great idea! I am new to this “new country”. I LOVE your book and blog, was the first site I checked after being diagnosed with microvascular heart disease by Dr. Sedlak in Vancouver BC in May 2019.

    Thank you for your wonderful book and great site! I have referred several friends who have heart issues.

    Liked by 1 person

    1. Hello Tracy and thanks so much for your kind comments. I’m glad you found my blog! You are in “very early days”, as they say – especially for a diagnosis like MVD which is so often misdiagnosed because it isn’t typically identified on cardiac diagnostic tests that have been developed/researched to spot large blockages in coronary arteries (i.e. MEN’S coronary arteries!)

      You are very lucky to have Dr. Sedlak as your cardiologist – please say HI! to her next time you see her!

      Like

  2. Hi Carolyn,

    The reference to the “File of Life” reminded me of a Calgary Emergency Medical Services program called Capsule of Life” My dad participated in the program and I was thankful the information was so readily available when it was needed most.

    I’m happy to hear that more organizations are formalizing this strategy to communicate critical information in an emergency.

    Liked by 1 person

    1. Sheila, that Capsule of Life program in Calgary (info in a plastic capsule kept inside the fridge with a note on the fridge door) is another great way to share med info when the paramedics come to your home. (My own fridge is always so full, paramedics might have problems finding it!)

      Outside of the home, a medical ID bracelet/tag is absolutely required for any person living with a chronic or serious diagnosis.

      Like

  3. Yes. I have an app on my phone that records blood pressure and blood sugar readings which has a notes section. This can then be emailed as a spreadsheet. It is very handy as it has helped the doctor figure out what is wrong with me due to vague symptoms.

    Liked by 1 person

    1. Hi Andrea – do you email this spreadsheet directly to your doctor? Many physicians don’t offer email communication with their patients (but boy, would this make sense during a health crisis). I’m picturing how many spreadsheets an average medical clinic might be swamped with….

      Like

  4. Thank you for this article, Carolyn, and I have to say I love the new look of your blog!

    A symptom and diet journal recently helped a friend of mine discover that she has a sensitivity to tyramine which was causing her to have debilitating migraines for at least half the days out of the month. She stopped eating lentils, which were a favorite food but a main trigger, and went for 11 days without a headache — a major breakthrough for her. (This after a doctor who couldn’t figure out how to treat her headaches told her, “Well, at least you don’t have cancer” and basically just live with it!)

    I have been keeping a general health journal that tends to have a lot of extra stuff in it, mostly what’s going on in my life that’s causing depression or other health concerns, such as some recent medication changes.

    This article is a good reminder to kind of “bulletize” my writing into a list of symptoms that might be easier to go through quickly. I also keep a kind of tally of health issues or procedures for all of us with each person’s info color-coded with highlighters. It’s all in my daily planner, including sections with all prescription drug info (rx number, number of refills, dates, costs, etc for each drug). Recently I consulted my planner while talking to the gal at the pharmacy and she was amazed — she told me she’d never seen anyone so organized! But I have to be hyper-organized just to stay on top of all the drugs we’re on. Sometimes I walk out with a shopping bag of refills — it’s just overwhelming.

    Another thought about journaling/keeping track of medical info — At my husband’s recent appointment with a new doctor, as he and I went through and updated the list of his current medications for the paperwork, we talked about writing these things out on the computer and having the list all printed out and ready for any future visits. It can be easily updated that way and I can also record family health histories and other relevant knowledge. I plan to do this soon and will keep copies in envelopes right on the fridge or somewhere like that just in case our grown kids ever need to find that info quickly, or if we have to call 911 for any reason. (This idea was recommended by a paramedic during a CPR class I attended.)

    Maybe this is a bit off track from the article but I don’t think you can be too organized with any medical info. Quick clear-headed access to that knowledge could mean the difference between life and death in a crisis.

    Liked by 2 people

    1. Hi Meghan – you are the poster child for well-organized health info! You also raise a good point: if you’re tracking symptoms, that ‘bulletized’ list should be separate and relatively brief so that clinicians can read it easily (as I quoted Dr. Hodge in this post: “The amount of time it takes a physician to review a one-page diary is substantially less than the time it takes to verbally interview a patient for the same information.”

      Also your mention of the printed information kept on your fridge reminds me of an official emergency response program specifically for fire/ambulance responders if you have to call 911 (e.g. Hilton Head Fire Department Captain/Paramedic Tom Bouthillet told me about what they call the “File of Life”: “We created small magnetic folders that hang on the refrigerator that contain the patient’s name, date of birth, social security number, medical history, allergies, medications, and emergency contact info. A sticker on the front door lets us know to check the refrigerator door.”

      PS Re the new look of my site: this had to happen after a big Google Algorithm Core Update on June 3rd that meant my site was “de-indexed” (not searchable if somebody Googled ‘women’s heart disease’, for example). My stats page showed a drastic drop in daily views overnight (>75%) – the major issue seemed to be that I launched my blog 10 years ago with a WordPress theme that was not “mobile-friendly”. Not an issue for years, but this time it was an issue because so many people do their Google searches via phone. So I had to quickly install a new “mobile-friendly” theme that works on small device screens!

      Liked by 1 person

  5. I’m not keeping a symptom journal now, but I have in the past.

    Years ago my neurologist recommended my keeping a journal to track down my migraine triggers. He said to include activities, mood, weather and when and what I had to eat and drink. He pointed out that sometimes one can have one or two things coincide but it’s having three happen together, like weather, certain food and specific activity that can trigger an event.

    As you can imagine, seeing that recurrence on paper is much easier than trying to remember it.

    I’ve taken that as an excellent lesson for other health mysteries.

    Liked by 1 person

    1. Such good advice. I like that addition of “weather” to the Symptom Journal list. I’d completely forgotten about that one, but it’s true: my cardiac symptoms go crazy in extreme cold or extreme heat…. Thanks for the reminder, Jenn… I’m going to add that to the list.

      Like

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