839359050370495
top of page

EDS Awareness May Management Maneuvers: 31 Days of Smart Strategies for Life with Ehlers-Danlos Syndrome

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.

13 views0 comments

Recent Posts

See All

Kommentare


bottom of page