Benefits of keeping a health journal for Myositis

Jotting down a few notes a day can be an invaluable resource for you and your doctors by providing a timeline of your Myositis and overlap conditions in relation to medications and other factors. It can be used as a more accurate tool to measure progress and a way for you to notice the subtle changes that you don’t always remember.

You may decide what is best for you is keeping several journals. Maybe you have one specifically for your health-related information and one for the personal and emotional aspects of the disease. Even if you do not use the medical journal for emotional aspects, it is a good idea to jot down a few words about how you are feeling emotionally that can be shared with your healthcare team.

Here are examples of items you can include in your health journal:

  • Physical abilities: Notations such as “rose from the kitchen chair,” or “able to shampoo my hair,” or “swallowing is better” will give you a timeline which can be used as actual measurements to chart how you are doing. It also can provide a great reminder of how far you’ve come!
  • Medications,  Supplements, Side Effects: Indicating medication names, dates, and dosages, when started and ceased, and tuning into any changes as noted in the other parts of your journal can help identify side effects or improvements that can be caused by medications and supplements. This can also be used to continue to monitor changes because sometimes initial side effects wear off once your body gets used to a medication. This documentation can be just as important in the future because you may be prescribed a medicine which may have given you an adverse reaction. Remember that medications have different names so make sure when you note the medicine you also note alternative names.
  • Physical symptoms: New or changed symptoms such as intestinal or breathing problems, muscle cramping or tingling are examples of symptoms to note. This creates an accurate picture and timeline for your doctor to pinpoint when symptoms started and whether they are cause for concern.
  • Pain: It’s important to be specific about the type (sharp, dull, ache), location (thigh, neck, right calf), frequency (24/7 or a couple of times a day), and whether it’s worse or better than normal. You can download a “pain chart” from the Internet and use it to describe the intensity of the pain.
  • Energy and fatigue status: Autoimmune disease is notorious for causing fatigue, but documenting the ups and downs also help your doctor identify if your medication needs to be adjusted or if you may have something like an overlap condition.
  • Emotional state: Stress is believed to be a contributor to many health issues, so noting how you are feeling emotionally can help document possible triggers or even reactions to medications. Your emotional state may be a link to your pain or weakness just as much as the pain and weakness of your disease may cause emotional distress. Depression is not uncommon with chronic disease, so detailing your ups and downs could help indicate if you suffer from depression far before it reaches a critical stage.
  • Diet and Nutrition. What we feed our bodies can be a large factor in how we feel physically and emotionally. Many people find that certain foods cause more pain and inflammation. Of course, it’s always wise to keep an eye on our weight, especially since many Myositis patients take corticosteroids, which can cause both hunger and weight gain. Making note of the types of food we eat on a daily basis (processed foods, gluten, sugar, salt/sodium, artificial sweeteners, or absence of those foods) can create a clear trend of how our nutrition plays into our disease.
  • Physical activity: Did you wake up feeling rotten but convinced yourself to do some exercise? Did you feel better afterwards or have to rest the next 2 days? Did the exercise cause any pain during or after? Making notes about what type and how much you do (or don’t do) on a daily basis can help you identify what is helpful to you.
  • Tracking Falls:  Keep a list of falls, where you were, what the circumstances were, and any noticeable injuries. This can be helpful for your doctor and should any issues arise later that may be contributed to the fall.
  • Vitals: Weight, blood pressure, and glucose are also noteworthy, so make sure you keep an eye on these numbers. The medications prescribed for many Myositis patients put us at high risk for weight gain, high blood pressure, and Diabetes, so knowing and tracking your numbers can be an important tool for controlling these numbers.
  • Weather conditions: Changes in weather, humidity, cold, and heat affect many people’s symptoms, so noting these changes can help identify your triggers.

Arming yourself with facts by documenting what you are going through on a daily basis can help you in many ways as well as give you accurate information to pass on to your doctor rather than wasting time in the exam room trying to remember how long you have been experiencing certain symptoms or changes in your health.

Interested in setting up a health journal but not sure where to start? Contact us and we will help you through the process.



Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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