MyoCon! Rate increases on August 28th!
By Darlene Butler
Many dermatomyositis patients fight for months to get answers, and there is a sense of relief when you hear “you have dermatomyositis.” Then treatment brings a new set of issues, such as expensive medications, side effects, insurance denials, busy treatment schedules, and more. Finally, you start to see improvements and feel somewhat better, thinking it can only improve from here.
Then, out of the blue, your fatigue returns with a vengeance, your rash is worse than ever, your joints hurt and your muscles ache and you fall back to near baseline disease symptoms. Suddenly, you hear the term “flare” and learn that flares may happen over and over with this disease. Even worse is hearing that you may have done something to trigger that flare. You are told to track your symptoms and activities to identify things that trigger a flare—and then avoid those. Sounds simple enough. But in reality, most of us have no idea what causes our symptoms to return, and most of us don’t know how to begin tracking the possible triggers of a flare.
I have been on treatment for dermatomyositis for over two years. My symptoms are relatively well controlled with my current regimen. That doesn’t mean I haven’t had my fair share of flares. Sometimes the trigger for those flares was obvious:a day in the sun at an amusement park and the death of a loved one. But there have been other times that I could not identify a causative factor for the flare up of my rash, brain fog, fatigue, or muscle aches.
I started keeping a diary of my daily activities and symptoms, and TMA’s My Myositis Tracker was helpful. However, I would forget to add notes sometimes, and it really didn’t show any potential triggers for my flares. So, I began looking for a phone app that would help me organize my daily activities and symptoms to see if there was any correlation. I knew the app had to be easy to use, inexpensive, and tailored to my specific condition. I wanted to be able to add symptoms that are unique to dermatomyositis and activities that seem irrelevant to other diseases, such as socializing or spending time outside.
I have tried several, but a few apps stand out as easily adaptable to dermatomyositis, and able to provide meaningful information for me and my doctor about triggers and flares. Symptom Tracker is easy to use, and you can choose from a lengthy list of symptoms to track every day. You can also add other symptoms that you might experience with dermatomyositis. It allows you to monitor dietary and water intake, activities, and even drug side effects. On the flip side, it can easily become overwhelming because the options are virtually endless.
Bearable is another option that is easy to use and modify to fit your needs. This app tracks uncommon disease points, such as mood, stress levels, activity levels, and hydration/nutrition values. It allows you to track various activities each day and then see the symptoms that may result from those activities by offering trends, impacts, and reports.
The Visible app requires the user to wear an armband for continuous tracking of heart rate and heart rate variability (HRV). It is easy to add specific symptoms and activities that you want to monitor, and after enough data is obtained, it provides graphs that show direct correlation between activities and symptoms. This app also assigns the user a number of “points” each day based on accumulated data and alerts you if you are spending too many points with activities and may trigger a flare. If desired, the user can schedule reminders to take breaks and do some deep breathing.
There are many additional apps that might be suited to your specific needs. Using an app can simplify monitoring your disease state and help you determine the possible triggers for a flare, allowing you to modify your day and activities when needed. Tracking your symptoms can also provide useful information to share with your care team to make sure your treatment is appropriate and working as it should.
I have discovered that the biggest triggers for me are social situations that involve long conversations, light, and excess sugar intake. Being armed with this information allows me to pace myself when I attend activities, decline invitations when necessary, and have confidence that I am doing what is best for me and my health. I continue to do household tasks, exercise when I can, and spend as much time as possible with family. But I no longer feel guilty when I simply spend the day in bed or on my couch.
Dermatomyositis is a brutal disease that takes and takes. Tracking symptoms, identifying triggers, and warding off flares gives us back some control, and allows each of us to be an active participant in our care and treatment.
Apps are available for iPhone in the App Store or Android in the Google Play Store. TMA does not endorse or evaluate third-party products or apps and cannot guarantee their quality, safety, or effectiveness. These resources are shared for informational purposes only.
Darlene Butler is a retired RN/MHA with extensive experience working with insurance providers, Medicare, and Medicaid from all angles. She is also experienced with documentation review and provider education.
