How to Better Handle Those Bad Days for hEDS Patients
Living with hypermobile Ehlers-Danlos syndrome (hEDS) can be challenging, especially on bad days when symptoms flare up. hEDS is a connective tissue disorder characterized by symptoms like joint hypermobility, chronic pain, fatigue, and more.
While there is no one-size-fits-all approach to managing this condition, here are 31 strategies for each day in May that may help make those tough days a bit easier.
1. Understand Your Triggers
Identify Patterns: Keep a diary of your symptoms and activities to spot patterns.
Environmental Triggers: Be aware of weather changes or activities that worsen symptoms.
2. Pain Management
Heat Therapy: Use warm baths or heating pads for muscle relaxation.
Cold Compress: Apply ice packs to reduce joint inflammation.
Over-the-Counter Medication: NSAIDs or acetaminophen may help, but always consult a doctor.
3. Joint Care
Braces and Supports: Use joint supports to stabilize hypermobile joints.
Gentle Stretching: Engage in light stretching exercises to maintain flexibility.
Avoid Overexertion: Know your limits to prevent joint strain.
4. Skincare
Moisturize Regularly: hEDS skin can be fragile, so keep it moisturized.
Protective Clothing: Wear clothing that protects against cuts and bruises.
Sun Protection: Use sunscreen to protect sensitive skin.
5. Diet and Nutrition
Hydrate: Drink plenty of water to maintain hydration.
Balanced Diet: Focus on a diet rich in fruits, vegetables, and lean proteins.
Supplements: Consult your doctor about supplements like vitamin C and D.
6. Exercise and Physical Therapy
Low-Impact Exercise: Swimming, cycling, and yoga are gentle on the joints.
Physical Therapy: A physical therapist can design a custom cautious exercise plan.
Pacing Yourself: Break up activities into smaller tasks to avoid fatigue.
7. Sleep and Rest
Regular Sleep Schedule: Stick to a consistent sleep routine.
Comfortable Bedding: Use pillows and mattresses that support your joints.
Rest Periods: Take breaks throughout the day to rest and recharge.
8. Stress Management
Mindfulness and Meditation: Practice mindfulness to manage stress.
Breathing Exercises: Deep breathing can help relax the body and mind.
Hobbies: Engage in activities that you enjoy and find relaxing.
9. Mental Health
Counseling or Therapy: Talk to a professional about managing the emotional impact of hEDS.
Support Groups: Connect with others who understand what you’re going through.
Positive Affirmations: Maintain a positive mindset to combat challenging days.
10. Medical Management
Regular Check-ups: Keep up with regular appointments with your healthcare team.
Medication Review: Regularly review your medications with your doctor.
Emergency Plan: Have a plan in place for severe symptom flares.
11. Home Modifications
Ergonomic Furniture: Invest in chairs and desks that support your posture.
Non-slip Mats: Prevent falls in slippery areas like the bathroom.
Accessible Storage: Keep frequently used items within easy reach.
12. Social Connections
Communicate Needs: Let friends and family know how they can help.
Socialize Wisely: Choose social activities that are not physically taxing.
Online Communities: Join online forums for people with hEDS.
13. Personal Care and Daily Living
Adaptive Tools: Use tools that make daily tasks easier.
Energy Conservation Techniques: Learn techniques to conserve energy.
Dressing Aids: Consider clothing that is easy to put on and remove.
14. Alternative Therapies
Acupuncture: Some find relief from acupuncture.
Massage Therapy: Gentle massage can relieve muscle tension.
Aromatherapy: Essential oils may help in relaxation.
15. Knowledge is Power
Stay Informed: Keep up-to-date with the latest hEDS research and treatments.
Educate Others: Help friends and family understand your condition.
Advocate for Yourself: Be your own best advocate in medical settings.
16. Plan Ahead
Daily Planning: Prioritize your tasks for the day.
Emergency Kit: Keep a kit handy with essentials like medication and ice packs.
Flexible Scheduling: Allow flexibility in your plans to accommodate symptom fluctuations.
17. Travel Tips
Comfortable Transportation: Choose the most comfortable mode of travel.
Pack Smart: Bring items that help manage symptoms and use luggage with wheels.
Rest Breaks: Schedule rest breaks during travel.
18. Mind-Body Techniques
Yoga: Yoga can enhance flexibility and reduce stress.
Tai Chi: This gentle martial art is good for balance and joint health.
Biofeedback: Learn to control certain body responses, which can help manage pain.
19. Creativity and Expression
Art Therapy: Engage in painting or drawing to express yourself and relieve stress.
Music Therapy: Listen to or create music as a form of relaxation.
Writing or Journaling: Writing about your experiences can be therapeutic.
20. Environmental Adjustments
Get Sunlight Daily: Helps to absorb deficient vitamin D.
Reduce Clutter: A tidy space can reduce the risk of falls and stress.
Appropriate Lighting: Bright, non-glare lighting can help prevent accidents.
Air Quality: Use air purifiers if allergens or air quality is a concern.
21. Assistive Technology
Voice-Activated Devices: Use technology that minimizes physical strain.
Mobile Apps: Utilize apps for medication reminders, symptom tracking, or relaxation.
Adaptive Computer Equipment: Consider ergonomic keyboards or mouse devices.
22. Coping Mechanisms
Recognize Limitations: Accept your limits and don’t push yourself too hard.
Celebrate Small Victories: Acknowledge and celebrate small accomplishments.
Problem-Solving Skills: Develop strategies for addressing day-to-day challenges.
23. Professional Support
Occupational Therapy: An occupational therapist can suggest modifications for daily living.
Specialist Consultations: Regularly consult with specialists familiar with hEDS, like Pilates trainers.
Holistic Health Practitioners: Consider holistic approaches under professional guidance.
24. Hygiene and Grooming
Easy-to-Use Hygiene Products: Choose items that are easy to handle.
Gentle Skincare Products: Use products that are kind to sensitive skin.
Bathing Aids: Utilize shower chairs or bath mats for safety.
25. Mobility Aids
Walking Aids: Use canes or walkers if necessary for stability.
Wheelchairs: For long distances, consider using a wheelchair.
Vehicle Modifications: Adapt your vehicle for easier access and comfort.
26. Family and Caregiver Support
Family Education: Educate family members about how they can assist.
Respite Care: Arrange for occasional respite care for yourself and caregivers.
Collaborative Care Plan: Work with family to create a care plan.
27. Financial Management
Insurance Navigation: Understand your medical insurance and what it covers.
Budget for Health Needs: Prioritize your budget for health care expenses.
Financial Assistance Programs: Explore programs that can provide financial aid.
28. Emergency Preparedness
Medical Alert System: Consider a medical alert bracelet or system.
In Case of Emergency (ICE) Info: Keep emergency contact information easily accessible.
Medication List: Always carry a list of your medications and dosages.
29. Community Involvement
Volunteering: Engage in volunteer work that accommodates your abilities.
Community Programs: Participate in local programs or support groups.
Advocacy and Awareness: Help raise awareness about hEDS in your community.
30. Navigating Healthcare
Informed Consent: Understand treatments and procedures before consenting.
Second Opinions: Don’t hesitate to seek second opinions when necessary.
Patient Rights: Know your rights as a patient.
31. Maintaining Independence
Self-care Skills: Develop skills for managing your own care as much as possible.
Home Safety: Ensure your home is safe and accessible.
Goal Setting: Set achievable goals for maintaining independence.