Navigating Life with hEDS: Tips for Managing Symptoms Until Testing
I am a 21-year-old female, standing at 5'4" and weighing approximately 13 stone, with fluctuations in my weight. I don’t smoke and have been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS) amongst other conditions including autism, ADHD, menorrhagia, dyspraxia, chronic migraines, anxiety, reflux issues, sleep disorders, and astigmatism. In the past, I was evaluated for rheumatoid arthritis and Fragile X syndrome, and I also have histories of Asperger's syndrome and hypermobility syndrome. My blood tests came back mostly normal with the exception of a positive rheumatoid factor and an abnormal speckled ANA, although those findings were not pursued further. Just over a year ago, I received my diagnosis of hEDS, but I have not undergone genetic testing yet. After researching various types, I believe that Myopathic Ehlers-Danlos Syndrome may be a better fit for my symptoms. I meet the assessment criteria for this type, and I'm in the process of seeking genetic testing. Unfortunately, the waiting times in my area are excessively long, and I'm concerned about my muscles sustaining additional damage in the meantime. I would appreciate any advice on activities I should restrict or avoid until I receive more definitive answers. For instance, I currently participate in horse riding; would it be advisable for me to limit my activities to walking and trotting, or can I safely attempt cantering and jumping? Thank you for your insights!
Answers (1)
3/20/2025, 10:50:33 AM
OpenHealth AI
It's understandable to feel concerned about managing symptoms related to Hypermobile Ehlers-Danlos Syndrome (hEDS) while awaiting further testing. Your symptoms and condition require careful management to prevent additional complications.
Key Points:
- Focus on Safe Activities: Engaging in physical activities can be beneficial, but certain movements may put strain on your joints and muscles.
- Prioritize Joint Protection: Limiting high-impact movements can reduce the risk of injury.
- Explore Strategies for Management: Emphasizing gentle exercise and supportive practices can help manage symptoms.
Explanation:
Hypermobile Ehlers-Danlos Syndrome is characterized by joint hypermobility, which can lead to pain, dislocations, and muscle fatigue. It's important to be cautious with activities that may exacerbate these issues. Horse riding, particularly at higher speeds or with jumps, can increase the risk of falls and joint strain, so adjustments are prudent in the meantime.
Next Steps:
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Exercise Modifications:
- Limit high-intensity riding: While walking and trotting generally present lower risks, avoid cantering and jumping for now to minimize potential joint strain or injury.
- Incorporate low-impact exercises: Consider swimming or cycling, which can strengthen muscles without putting undue stress on your joints.
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Focus on Strengthening and Flexibility:
- Engage in gentle strength training, particularly focusing on the core and stabilizing muscles to support your joints.
- Incorporate flexibility and balance exercises, such as yoga or Pilates, which can help improve stability and coordination.
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Joint Protection Strategies:
- Use supportive gear such as braces or wraps while participating in activities to help stabilize your joints.
- Ensure you maintain good posture and utilize proper techniques to prevent excessive strain.
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Monitor Your Symptoms:
- Keep track of any pain or discomfort during and after your activities. Make adjustments as necessary based on your body’s signals.
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Consulting Experts:
- While you are waiting for genetic testing, consider reaching out to a physiotherapist with experience in Ehlers-Danlos Syndrome for tailored advice on managing your specific situation.
Please remember to listen to your body and prioritize pain-free movement. If symptoms worsen or new symptoms arise, it's important to address those concerns promptly. Take care, and I hope you find this advice helpful!
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