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A cell phone with pages that turn like a notebook. People interact around it journaling symptoms.

The Importance of Tracking Your Symptoms

When you’ve been impacted by Multiple Sclerosis for pretty much your entire life (diagnosed at a young age but also growing up around the disease), it’s hard not to make recommendations for other people. I still try my hardest, because I know this disease can affect everyone differently. Instead, I try to focus on talking about my experiences and allowing others to draw conclusions from them. There are far too many people out there that want to tell you what to do anyway; you don’t need one more. While everyone with this disease is different, this is a rare case where I think this advice is pretty universal: to keep a detailed history of your symptoms. Having a written history of the way MS has affected you can be extremely helpful for you and your MS team.

Do you write your MS symptoms down?

It may seem like a no-brainer, right? To keep detailed records of your symptoms. How many people actually do it, though? I imagine not enough. I’m not talking about making a mental note of when something pops up; I mean actually writing it down, with a date, time, and some details. Leaving this up to memory can be an especially bad idea when it comes to a disease that can affect your brain the way MS does. Even if you are writing it down, are you writing enough detail? Are you consistent? Will it be accessible when needed?

Why it’s important to document your symptoms

Keeping detailed notes of when a symptom pops up can be critical when determining if you are having an exacerbation and also in determining the efficacy of your treatment. It’s important to be able to tell if you are having new symptoms versus already established ones. It can also be valuable in determining what may be triggering your symptoms. I like to make note of not only the date, time, and what happened, but also the weather and my stress level (I’ll add details like “someone mentioned my ex-mother-in-law” or something along those lines). That info is important because you can have symptoms without any disease change (and vice versa, the disease can still progress without any symptoms). Whether you are showing the information to your doctor or simply using it yourself, it’s important to have this information.

Key aspects when keeping track of your MS

Many people still prefer to handwrite information. If that’s your thing, a tiny notebook that’s portable might be good for you. Having your log easily available is critical. I personally prefer to rely on technology a bit more. Since I generally have my smartphone with me at all times, I keep a Google Doc (their version of a Microsoft Word document) pinned to the home page of my phone. Not only is it easy to access, but it also syncs with the cloud, so I can view it and edit it on any other internet connected device. I can also easily share it with whomever I choose. That’s my personal preference, but there are many symptom tracking options for this. Our friends at the MSAA even have an app of their own that makes this easy (it’s definitely worth checking out because it’s a lot more than symptom tracking, it allows you to track numerous aspects of your disease. In this age of privacy concerns, it’s also HIPAA compliant. I hope to start migrating to it myself soon and will review it after I’ve spent some time with it).

Aside from ease of access, as I’ve already mentioned, the date, time, and some detail of your symptoms are the important things to keep track of. Being consistent is also important because a partial list of symptomatic moments can create the wrong picture. Once you get into a routine though, it’s not that hard.

It feels good

I’ll also say this: there is something a little therapeutic to me about logging my symptoms. When I’m not feeling well and really don’t have anything I can do to fix it, being able to do something, even if it’s just writing/logging the episode can make me feel a bit more at ease. At least I’m doing something to fight it, even if it’s simply logging information. That may sound a little crazy, but try it and I think you might begin to feel differently. Logging our symptoms is a way to fight back against the disease, it’s a way to do something when we feel most helpless.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • brewlabs
    6 months ago

    Could not agree more on this topic! I started tracking my symptoms and so much more! And after a few months of data tracking was able to find a serious medication problem I was having – and I also learned a lot more about my conditions, triggers, and habits.

    I found an App (TracknShare $5) that really works for me – easy to setup and use and satisfied my tech need to export the data and build my own charts and graphs (although it has them in the app).

    I have about 25 items I track – most of them daily. I have also “retired” certain items that I determined I no longer needed – but I have also added items too!

    Probably important to note that two other things have really help with data gathering. My Apple Watch and a sleep monitoring app called Pillow – and of course the Health app within the iPhone.

    Everyone’s different obviously but here’s what I track:
    * Symptoms (fatigue, pain, depression, etc.)
    * Medications (anti-fatigue, vitamin D, allergy, etc.)
    * Sleep (time, quality, naps)
    * Stress/Anxiety
    * Water
    * Vitals (weight, blood pressure)
    * Activity-Related (time worked, travel/flights, steps, calories expended, workout time, alcohol use, hikes, etc.)
    * Interactions (Y/N) (as someone who lives alone, works from home, and is not near any close family or friends I track whether I had any social interactions)

    The Apple Watch has helped significantly and is a high recommend. In addition to the sleep tracking, it has a fall detection setting, and emergency notification to 911 and contacts (free). The safety items really help with my loved ones peace of mind!

    One of the main reasons to track with technology if possible is that self-reported data is very subjective and error-prone. When I tracked my sleep in a manual log (before the watch) I recorded daily sleep of around 6+ hours and a quality of 6/10. The watch has debunked that and shows I sleep 30% LESS than I thought I was (4.5hr) – but the quality of my sleep is 9/10. With accurate data it explained much about my energy levels and allow me to modify my activities accordingly.

    Thanks Devin for another very relevant topic and one that I truly believe that most of us would benefit from doing better – those of us with MS, caregivers, and even the general public).

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