Because dysautonomia involves multiple symptoms and trying different treatment approaches, it’s the patient who needs to share details about how treatments are working and how their symptoms are improving or worsening. In this way, the patient can work with their providers to find options that will help manage their dysautonomia. Tracking your symptoms gives the provider data to work with as they find treatments for chronic health issues.
Tracking current and new symptoms and making notes on how your body responds to treatments should become a daily habit. How you choose to do this is entirely up to you. Here are some tips and resources that may be helpful as you start tracking and collecting data to share with your provider.
Determine the information you want to record. This may include:
- Symptom description
- When did the symptom started (onset)?
- Severity: You may want to use a pain scale from 1-10 (10 being the most severe).
- How long did the symptom last?
- Frequency: How often during the day?
- Are there activities/foods/circumstances that trigger this symptom or make it worse?
- Are there any activities/foods/circumstances that decrease the severity of the symptom or bring relief?
- Does the symptom seem to be connected to any other symptoms you’re experiencing?
Find a system for tracking your symptoms. Whether you use a symptom tracking mobile app or record it by hand, it’s important to be able to print shareable reports of the data with your provider. If you track your symptoms on paper, you may want to convert it to some document that easy to read for your doctor. This is an extra step.
An easy place to start is by using the Autonomic Disorders Assessment. This is a free educational assessment which can be used by individuals who suspect they may have an autonomic disorder or those who have already been diagnosed with an autonomic disorder. It allows undiagnosed patients to screen their symptoms to determine if they have a higher or lower risk for an autonomic disorder. Diagnosed and undiagnosed patients can print a report that summarizes their symptoms and take it to their provider. We encourage individuals to repeat this assessment in the future to identify trends in health by saving a copy of this assessment report.
If you’re using a symptom tracking app:
- Can the app track all the symptoms you need to track? Dysautonomia symptoms involve multiple organ systems. You may be tracking a variety of symptoms. Make sure the app can track yours.
- Data sharing: Ideally you want to collect this data, print it, and share it with your provider in a document that is easy to read.
- Is it easy to use? Tracking symptoms need to be a daily habit, so make sure you choose something that’s not too complicated and involved or else you may give up after a while.
- Protection: Is your data safe on this app?
- Do you want push notifications and reminders to record symptoms regularly?
One common problem with dysautonomia is brain fog or mental clouding. Apps can be very helpful because you can program notifications that remind you to record your symptoms. However, if using an app feels overwhelming, start small and use a journal. Some data is better than none. If you have a family member that can help you with tracking your symptoms and reactions to medications, ask them for help. Here are few apps to consider:
- It’s known for being easy to use (hence the name).
- Add photos (one a day for free; 10 for upgrade)
- Export data to pdf file
- Cost: It has a basic free product (tracks five symptoms for free) – upgrade for a fee
- Monitor symptoms, meds, exercise, diet, sleep
- Share data with others
- No free version
- 3-day trial
Patients Like Me
- Creates charts and timelines of meds and symptoms
- Can automates doctor’s visit reports
- Connect with others in Patients Like Me community
Manage My Pain
- Download reports
- Allows for more details than other apps
- Document what you done that brings relief to symptoms
This is not an exhaustive list of available apps. There are plenty of options. Find one that works for you. Whatever you choose to use for recording your symptoms try to be consistent.