Need to Know: Expanding Your MS Symptom Journal

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “How do you feel about journaling? It’s a good way to keep track of your MS symptoms!” from June 7, 2018.

Last week, I suggested that you keep a symptom journal to better manage your multiple sclerosis (MS). In this column, I’ll offer some brief thoughts on how you can expand your journal to help conquer the daily challenges of living with this disease.

Symptom journal specifics

Categorize symptoms by body system or other relevant headings to see if it helps you get a clearer picture. Following is a snapshot of what I’ve done. I’ve included not only clear MS symptoms, but also everything else, because sometimes it can be hard to know whether a symptom is related to MS or some other disorder.

Nervous

• Pain: headache, migraine, jaw pain
• Executive function: memory issues, slurred speech, word-finding issues, “cog fog,” attention deficit
• Mood: mood swings, unexplained anxiety, depression
• Eyes: eye pain, blurred vision
• Ears: tinnitus, dizziness, vertigo

Digestive/excretory 

• Urinary: hesitation, retention
• GI: constipation, diarrhea, stomach upset, gastroesophageal reflux disease (GERD)

Metabolic

• Feelings of low blood sugar (not diabetic)

Generalized body 

• Pain: hands and feet, incessant itching, aching or burning sensations
• Sensory: paresthesia, numbness, body temperature swings, flushing
• Energy: drowsiness, general fatigue, feeling stressed, insomnia
• Muscular/motor: stiff neck or shoulders, leg cramps, standing balance issues, moving balance issues, foot drop, leg tremor, shakiness, electric shocks in the feet, toe cramps

Reproductive 

• Menstrual issues, yeast infection, hot flashes

Respiratory 

• Breathing difficulties, allergies

Of course, if you drill down, you might find other symptoms to track. This underlines the common reference to MS as a “snowflake disease” — no two cases are alike!

Symptom journals. (Photo by Tamara Sellman)

Other things to track

Keeping lists helps me make sense of my world, keeps me on track, and clarifies information. I think you can benefit from keeping track of these other things, which may or may not be directly related to MS, as well.

Worries

You will sleep better if you write down your worries, frustrations, and anxieties at bedtime.

Why? There’s something healthy and empowering about writing down these feelings. It’s like you’re putting your goblins in jail for the night. They’ll still be there in the morning, but at least you might escape them for a while.

Try it. You’ll be surprised at how well it works.

Rants

Expressing your negative emotions (and there are so many) attached to having MS in a “rant journal” is great therapy, especially if you don’t have access to a good support group.

Proactive efforts

We all have daily stresses, but what did you do to counteract them today?

Keep track of positive actions to remind yourself you have made healthy choices and have some control over your journey. These can include going for a walk, reading poetry, getting a massage, practicing yoga, listening to music, going to church, giving yourself a facial, soaking in Epsom salts, and watching stand-up comedy for the laughs.

Write these down, then sit back and smile. You’ve got this.

Notes and references

Write anything you’ve learned or want to know more about in the journal to review with your doctor.

Information is power. If you have encountered studies online, save the links. Also, if you find good information that you think you will want to return to (research papers, websites, books, etc.), record it here.

If you’ve heard scary things in a Facebook group, write them down. Don’t take them at face value.

If someone has asked you a question you don’t know the answer to, save it here.

Bring this journal to each appointment. Share what you’ve learned, ask those questions, and curb those fears.

Gratitude

I have friends who share five things they are grateful for every single day on their Facebook timelines.

You can do this in your journal; being specific and granular is useful. “Having lattes with my grown daughters” is not only something to be grateful for, but also it’s a wonderful memory you can reflect on later.

It is easy to focus on the negative when living with MS. Noticing what’s good, what’s right in the world, what you love, or what makes your heart sing can defend against your bad feelings by providing a healthy dose of perspective.

Do you keep a customized journal that includes more than just symptoms? Post your replies in the comments below or at the original “How do you feel about journaling? It’s a good way to keep track of your MS symptoms!” forum entry.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.