Maintaining Your Ongoing Care with EDS

 

Once you move beyond the initial Ehlers-Danlos Syndrome (EDS) diagnosis, begin building your care team, and start finding treatments that help, you enter what many call the maintenance phase. This is where things start to stabilize—you’ve ruled out the most urgent concerns, found providers who understand your condition, and have a clearer sense of your body’s patterns. In this phase, the focus shifts to fine-tuning: trying alternative therapies, adjusting medications, developing supportive routines, and learning lifestyle strategies like pacing, energy conservation, and flare-up response plans. It’s not about curing the condition—it’s about managing it wisely, reducing disruptions, and improving quality of life over the long term. We’re sharing a few tips for living well in this phase of life which can last for many years or longer.

Top Ten Healing Habits for Daily Success 

Living with EDS requires a constant balancing act—managing symptoms, staying active, and maintaining overall well-being. In Christie Cox’s book Holding It All Together When You’re Hypermobile, she emphasizes the importance of small, consistent healing habits that contribute to a better quality of life. Here’s how you can implement and maintain these habits to keep your care at its best. She shared this summary for your use.

1. Start with Morning Routines

• Gentle Stretching: Begin your day with gentle stretches to wake up your muscles and joints. Incorporate movements that target areas prone to stiffness or pain, such as your neck, shoulders, and hips.
• Hydration: Drink a glass of water first thing in the morning. Staying hydrated is crucial for joint health and overall bodily function, especially for those with EDS.
• Mindful Breathing: Practice a few minutes of deep breathing or meditation to center yourself for the day ahead. This can help reduce stress, which often exacerbates symptoms.

2. Prioritize Physical Activity

• Tailored Exercise: Incorporate low-impact exercises like swimming, gentle yoga, recumbent biking, or pilates into your routine. These activities strengthen muscles and support joints without putting undue stress on your body. Always listen to your body and modify exercises as needed.
• Consistency Over Intensity: Focus on consistency rather than intensity. Even on days when you’re feeling fatigued, doing a small amount of movement can help maintain your fitness level and prevent deconditioning.
• Physical Therapy: Regularly consult with a physical therapist who understands EDS and the nuances of hypermobility. It’s critical to see an informed practitioner or you can get injured.  They can provide exercises tailored to your specific needs and ensure you’re using proper techniques.

3. Optimize Your Diet

• Balanced Nutrition: Eat a balanced diet rich in anti-inflammatory foods, such as leafy greens, fruits, nuts, and fatty fish. A low FODMAP diet and/or gluten free can be helpful as well.
• Frequent, Small Meals: If you struggle with gastrointestinal issues, try eating smaller, more frequent meals throughout the day. Think snacks, like a handful of nuts or cheeses. This can be easier on your digestive system and help maintain sustainable energy levels.
• Supplements: Consider taking supplements that support joint health, such as zinc, vitamin C, and magnesium, after consulting with your healthcare provider. Trendy collagen supplements are not yet understood to help or harm our population.

4. Practice Mindful Rest and Recovery

• Scheduled Breaks: Incorporate regular breaks into your day, especially if you’re engaging in activities that strain your joints or require prolonged standing or sitting. Use these breaks to stretch, hydrate, and reset. Set a timer to remind you to move around every 30-60 minutes and the aches and pains will thank you.
• Quality Sleep: Prioritize sleep by creating a calming bedtime routine. This might include reducing screen time before bed, using a weighted blanket, eye masks, or practicing relaxation techniques to improve sleep quality. Talk to your doctor about any insomnia to strategize what works best for you to help build restorative rest habits. Rest is crucial to your overall daily wellbeing.
• Listen to Your Body: Learn to recognize when your body needs rest. Pushing through pain or fatigue can lead to flare-ups and long-term setbacks, so allow yourself the time to recover when needed. Honor the voice inside you.

5. Develop Coping Strategies for Flare-Ups

• Flare-Up Kit: Prepare a “flare-up kit” with items that help you manage pain and discomfort, such as hot/cold packs, pain-relief creams, and supportive braces. Having these items readily available can make a significant difference when symptoms intensify.
• Mindful Relaxation: Practice relaxation techniques like deep breathing, meditation, or gentle stretching to help manage pain and reduce stress during flare-ups.
• Pacing Techniques: Learn pacing strategies to balance activity with rest. Break tasks into smaller steps and take frequent breaks to prevent overexertion.

6. Stay Organized

• Daily Planner: Use a daily planner or digital app to organize your tasks, appointments, and self-care routines. This can help you stay on track without becoming overwhelmed.
• Medication Management: Keep track of your medications and supplements with a pill organizer or app that reminds you when to take them. This ensures you’re managing your treatment plan effectively. Try Medisafe, a free app to manage prescriptions when you have too many to keep up with.
• Document Symptoms: Maintain a symptom journal to track how you’re feeling each day. This can help you identify patterns, understand triggers, and communicate more effectively with your healthcare providers. Keep all these data sources easily available from your phone to share with doctors during appointments.

7. Foster a Supportive Environment

• Support Networks: Build a support network of friends, family (or family of choice), and healthcare providers who understand your condition and can offer help when needed. Connecting with others who have EDS can also provide valuable insights and emotional support.
• Set Boundaries: Learn to set boundaries with others and yourself. It’s okay to say no to activities or responsibilities that may overextend you physically or mentally. Prioritize self-care.
• Empowerment through Education: Continue to educate yourself about EDS and how it impacts your body. The more you know, the more empowered you’ll be to make informed decisions about your care.

8. Incorporate Mindful Self-Care

• Self-Care Rituals: Regularly engage in activities that bring you joy, rest, and relaxation, whether it’s reading, crafting, or spending time in nature. Self-care isn’t a luxury—it’s a necessity for maintaining your well-being.
• Positive Affirmations: Practice positive self-talk and affirmations. Remind yourself that you’re doing your best and that small, consistent efforts add up over time.
• Creative Outlets: Express yourself through creative outlets like writing, drawing, or music. Creativity can be a powerful tool for processing emotions and staying mentally resilient.

9. Continuous Learning and Adaptation

• Stay Informed: Keep up with the latest research and advice on managing EDS.
• Adapt to Changes: Be flexible and willing to adapt your habits as your condition or circumstances change. What works today might need adjustment tomorrow, and that’s okay.

10. Celebrate Small Wins

• Acknowledge Progress: Celebrate your small victories, whether it’s completing a task, managing a flare-up effectively, or simply sticking to your routine. Recognizing these achievements can boost your morale and keep you positively motivated.
• Gratitude Practice: Cultivate a practice of gratitude by acknowledging the things that went well each day, no matter how small. This can help shift your focus to the positive aspects of your journey.

By embracing these small, consistent habits, you can create a lifestyle that supports your health and well-being despite the challenges of EDS. Remember, it’s the accumulation of these daily practices that makes the difference. As Christie Cox emphasizes in her book, holding it all together is about finding what works for you and sticking with it, one step at a time.