How to Manage Fluctuating Symptoms With Rare Disease

Have you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease?

I have type 1 narcolepsy with cataplexy, and it feels like my symptoms can change from day to day. Even seemingly extraneous factors like the weather can worsen my symptoms! For example, getting overheated due to hot weather can severely reduce my wakefulness levels. Doing too much in too short of time can also make my symptoms worse for days at a time.

How to manage fluctuating symptoms

As a person with a chronic rare disease, I've learned that there aren't any hard and fast rules when it comes to predicting symptom flares. However, there are a few ways that I manage having to deal with fluctuating symptoms regularly. Managing inconsistent symptoms of a rare disease can be challenging. These techniques help me adapt and navigate symptoms.

1. Document my symptoms

I keep a journal and use a notes app on my phone to record my symptoms. I record when they start, worsen, or improve, which helps me identify potential patterns and triggers.

2. Establish a daily routine

I maintain a regular daily schedule for meals, sleep, and activities. This helps stabilize my body's rhythm.

3. Pace myself

I respect my limits to avoid overexertion. I break large, daunting tasks into smaller steps and take breaks as needed.

4. Stay hydrated and nourished

Proper hydration and a balanced diet can help improve overall well-being. I've considered consulting a nutritionist for tailored nutritional advice based on my individual needs. It would be helpful to ask them what they'd expect certain foods to do for my symptoms!

5. Practice stress management

Stress is the WORST symptom trigger when it comes to my rare disease!

Techniques such as meditation, deep breathing, yoga, or gentle exercise like dancing or taking short and manageable daily walks can help relieve stress. These practices help reduce my mental and physical tension.

Additionally, mindfulness and deep breathing can help promote relaxation. I like to use these practices at night. It makes it easier to fall asleep and stay asleep. Sleep is crucial for recovery and overall health, especially for those of us with narcolepsy who are used to experiencing insomnia and broken sleep.

Learning to manage my stress has been empowering. Stress management techniques equip me with the tools I need to handle the emotional and physical challenges of my condition.

6. Communicate with my healthcare providers

I regularly discuss my symptoms with my doctors. They may adjust my treatment plan as needed. Regardless, sharing my symptoms allows my provider team to keep records for things like disability applications and health insurance.

7. Engage with support groups

Support groups are also a way that I manage my stress levels. Participating in chronic illness support groups can create a sense of community. This helps me feel less isolated!

In addition to this, connecting with others who have similar experiences can provide me with practical advice for living with my chronic rare disease.

8. Prioritize proper sleep

I'm mentioning this again because it is SO important for me! Prioritizing good sleep habits, such as adequate rest, is crucial for managing chronic illness. It helps me to create a calming bedtime routine and a comfortable sleep environment.

For example, I always take a warm bath with Epsom salts and comforting music before bed. This helps my body know it is time to wind down and rest.

9. Be kind

Acknowledge that it's okay to have bad days. Be kind to yourself by practicing self-compassion! Allow yourself to rest when needed — it doesn't mean you're lazy. Remember, it's essential to use coping skills that can be helpful for your specific situation, and always consult with healthcare professionals for personalized advice!