It can be hard enough to remember what you ate for lunch yesterday. Relying on memory for tracking lupus isn’t enough.

Keeping track diligently of lupus symptoms, flares, and treatments are a crucial part of finding out what is working for you — and just as importantly, what isn’t working. Having reliable and clean logs will make it easier to share accurate and identical information with all members of your care team and any new doctors that you may see. But what should you track?

Tracking lupus symptoms

If you are newly diagnosed or questioning if you have the disease, this is particularly important. Tracking your lupus symptoms daily can help you identify patterns in how you are feeling. For example, it can be easy to remember having headaches last week. But, it may be harder to remember how many days you experienced headaches and information about the pain.

When tracking symptoms, you should record:

• The day and time for which you are recording
• The type of symptoms you are experiencing – for example:
  • Fatigue
  • Joint pain
  • Muscle spasms
  • Many, many more
• A consistent detail about the severity of the pain or discomfort – for example:
  • Mild / Moderate / Severe
  • 1 = Incredibly mild  |  10 = Can’t imagine more pain/discomfort
• A brief description of the symptom – for example:
  • Pain may be stabbing, burning, etc.
  • A rash may be red and about the size of a dime
• The location of the symptom
  • Headaches may be on the front, left part of the head
  • A rash may be on the left elbow

Keep a medication log

When paired with the lupus symptom tracking, a medication log can be an invaluable tool to determine potential side effects of medications. It can also help determine if a medication cocktail is having the desired impact, or if it may need to be adjusted.

A medication log should include:

• The day and time for which you are recording
• The name, strength, and dose of medication that WAS TAKEN
• For reference, the name, strength, dose, and schedule of the medication that WAS PRESCRIBED

 

Download the LupusCorner app for support with tracking lupus, managing medications, and even chatting with other Lupus Warriors. It’s available for both iOS and for Android

 

Track your periods

For women that are still menstruating, tracking your periods can be an additional point of comparison to the symptom and medication logs. You may be able to identify additional patterns such as increased fatigue or soreness. If the uptick in the symptoms is significant, your treatment team may be able to develop strategies or treatments to minimize symptoms throughout your cycle.

You can use Flutter on your smartphone to track this.

 

Monitor your diet

There is plenty of misinformation on the internet about miracle food cures for lupus. While those are not to be trusted, tracking your food intake may help you identify which foods make you feel better or worse. Additionally, it is important to maintain a balanced diet to ensure proper health. Apps such as MyFitnessPal have large food directories. By tracking daily, you will be able to track your caloric intake and ensure you are getting enough of each essential element, like fats, proteins, sodium, carbs, and sugars. Without tracking, you may not realize how far off you are from the daily dietary guidelines.

 

 

Record your exercise

Exercise is all about goals. While you may not feel able to run a marathon, there are plenty of daily activities that keep you active and healthy. Monitoring walking for five to ten minutes, climbing stairs, or full gym workouts can help you monitor your progress.

It’s true, winter is coming, but what does that mean for your lupus (or the other conditions you might be battling right alongside like Raynaud’s or Rheumatoid Arthritis?)

 If there is one thing we know about lupus, it is that it effects people very differently.  While that is one of the main reason’s lupus is hard to diagnose, it also makes it challenging for lupus warriors to know what to expect. So with winter coming, what should you expect?

How does winter affect you?

Does the winter impact your lupus? Do you feel more joint pain? Do you find yourself leaning more on your lupus or rheumatoid arthritis medications? Share in our poll and see what other lupus warriors are saying.

One of the most common symptom of lupus, many people experience and live with chronic pain. But, there are strategies for battling it.

“My hands, wrist, shoulders… You name it, the pain is there”

The pain associated with lupus can be one of the most challenging parts of the disease. Everyone with lupus experiences it differently and in different amounts. The most common locations are:

• Joints
• Headaches
• Itchiness and irritation from rashes
• Lungs and breathing
• Abdomen

Causes and Solutions of Lupus Pain

Pain from lupus comes mostly as a result of other common lupus symptoms.

• Sun sensitivity can make bright sunny days can trigger dry eyes, headaches, and sun burn
• Rashes that come from flares are itchy and irritating
• Digestive issues associated with certain types of lupus cause severe stomach cramps
  • Lupus enteritis is a type of lupus that causes inflammation of the small bowel
• Swelling can put pressure on your joints, making them ache even if you aren’t moving around.

That’s a tough list. But, identifying the root cause can help you get the right treatment. Additionally, you can try:

• Wearing sunglasses, hats, or long sleeves in the sun
• Tracking what you eat and manage your diet to help your abdominal issues
• Icing and rest any swollen joints or muscles
• Speaking to your doctor and get the right medication.

Lupus, Fibromyalgia, or Rheumatoid Arthritis?

Another challenge for many Lupus Warriors is that often they are not just battling lupus, but other conditions that cause pain like fibromyalgia and rheumatoid arthritis. If you are battling multiple conditions, it is important to make sure you are addressing them correctly.

Make sure to work with your doctor to find the right medications and track your pain. Also, while pain medicines can be helpful, and in many instances are necessary, there are always risks and side effects with medications. It is good to know some other approaches to pain relief:

• Mediation / Breathing Techniques
• Reflexology
• Yoga
• Warm Baths
• Moist Heated Towels

Stress and Staying Positive

Perhaps the most challenging part of the lupus pain is the frustration that comes along with it. Daily aching, headaches, and rashes can wear on you and can make living your normal life exhausting and the stress caused by mental strain can actually worsen your physical pain! So it is important to keep your mind and mood healthy.

How can you help yourself?

• Exercise
• Do meditation or light yoga
• Keep your brain distracted with hobbies and activities
• Stick to a healthy diet from your doctor
• Share with friends and family

Staying positive and keeping yourself focused on other things will not only keep your mind healthy, it can also help to reduce physical pain.

Living with lupus is tough. But, the winter cold can make it worse. Here are 3 pain-relieving tips for making it through the coldest season.

While scientists haven’t found a link between cold weather and lupus symptoms, here are some pain-relieving tips for times when the cold seems like too much to handle.