Welcome to the Bendy Club blog! This week, we’re focusing on dysautonomia—a condition that many with hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndrome (EDS) frequently experience. Understanding dysautonomia is crucial for managing symptoms and improving your quality of life.
What Is Dysautonomia?
Dysautonomia refers to a group of disorders that affect the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure, and digestion. Often misunderstood and misdiagnosed, dysautonomia can present a variety of symptoms that can significantly impact daily life.
Recognizing Symptoms Early
Recognizing the symptoms of dysautonomia early can make a big difference in management and quality of life. Symptoms can include:
- Dizziness and lightheadedness
- Heart palpitations
- Blurred vision
- Chronic fatigue
- Gastrointestinal issues
- Anxiety and mood swings
Real-life Insight: Many patients I encounter have seen numerous specialists without them even considering dysautonomia as the cause. One patient, in particular, had been experiencing unexplained dizziness and heart palpitations for years. It wasn’t until she was diagnosed with dysautonomia that we could begin effective treatment.
Action Steps for Managing Dysautonomia
Understanding dysautonomia is the first step, but knowing how to manage it is equally important. Here are some actionable steps:
- Seek Proper Diagnosis: Finding a healthcare professional knowledgeable about dysautonomia is crucial. Proper diagnosis can lead to better-targeted treatments.
- Monitor Your Symptoms: Keeping a detailed log of blood pressure and heart rate as well as the symptoms you experience can help determine the severity of your condition and if any trends are present. Check out the Hypermobility Solutions Heart Rate and Blood Pressure Log to start tracking today!
- Stay Informed: Educate yourself about dysautonomia. Knowledge empowers you to take control of your health. Resources like Dysautonomia International offer valuable information.
- Physical Therapy: Engage in a tailored physical therapy program to help improve circulation, tolerance to orthostatic changes, and improve symptoms like dizziness and fatigue. Simple practices like having a routine before getting up from a prolonged time sitting or laying can be very effective in preventing severe symptoms. Check out this video for an example; https://youtu.be/xCxSVO5PRTA?si=yJJXZ5og15rE-Lfs
- Hydration: Maintaining adequate hydration is KEY. Dysautonomia can be greatly improved by increasing your total intravascular volume i.e. having more fluid in your circulation. Generally I recommend patients to ensure 2-3L of water daily and increase if they are profusely sweating for 30 or more minutes. The easiest way to do this is buy a 1L stainless steel water bottle online and drink 2-3 per day.
- Electrolyte Supplementation: Drinking water alone is not enough. In order to increase the amount of blood volume you need to also use electrolytes. There are many different electrolyte supplements out there, but I generally recommend simple, cheap Sodium Chloride tablets. I generally start with 1-2g daily of Sodium Chloride tablets and go up from there if needed.
- Compression Garments: Using compression socks, spanks, and abdominal binders can help prevent blood from pooling in the lower extremities. This can be very helpful especially on days with increased symptoms.
- Mind-Body Practices: Incorporate practices like deep breathing exercises to help manage stress and improve autonomic function.
- Community Support: Join support groups or online communities for emotional support and shared experiences.
Patient Story
One of my patients, Sarah, struggled for years with unexplained dizziness and heart palpitations. She was often dismissed by doctors, told that her symptoms were “just anxiety.” After a comprehensive evaluation, she was diagnosed with dysautonomia. With a tailored management plan, including increased hydration, electrolyte supplementation, physical therapy, and lifestyle modifications, Sarah has significantly improved her quality of life. Stories like Sarah’s underscore the importance of proper diagnosis and personalized care.
Share Your Journey
We encourage you to share your experiences and connect with others on our social media platforms. By building a supportive community, we can help each other navigate the challenges of living with HSD and EDS.
Connect with Us
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Ready to Take the Next Step?
For those seeking personalized guidance, our 1-on-1 coaching program offers tailored support to address your specific needs. With expert advice and a comprehensive plan, you’ll gain the tools and confidence to manage dysautonomia and live your best life. Learn more and sign up here.
Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
P.S. Stay tuned for next week’s blog where we’ll explore “Living with POTS: Practical Tips and Strategies”. Exciting insights await!
References
Gazit, Y., Nahir, A. M., Grahame, R., & Jacob, G. (2003). Dysautonomia in the joint hypermobility syndrome. The American Journal of Medicine, 115(1), 33–40. https://doi.org/10.1016/s0002-9343(03)00235-3
Dysautonomia International. (n.d.). What is Dysautonomia?
The Ehlers-Danlos Society. (n.d.). Dysautonomia and POTS
Home. The Ehlers Danlos Society. https://www.ehlers-danlos.com/
What is HSD?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-hsd/
What is eds?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Jovin, D., Atwal, P., Herman, K., Block, N., Maxwell, A. J., Mitakides, J., Maitland, A. M., Saperstein, D., Hamilton, M., Schofield, J., Koby, M., Klinge, P., McElroy, A., Bluestein, L., Chopra, P., Tishler, J., Pocinki, A. G., Varga, J., Dempsey, T., … Lane, K. (2020). Disjointed: Navigating the diagnosis and management of Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Hidden Stripes Publications, Inc.
Smith, C., & Wicks, D. (2017). Understanding Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: (previously known as Ehlers-Danlos Syndrome Hypermobility Type & Joint Hypermobility Syndrome, respectively). Redcliff-House Publications.
Cox, C. (2022). Holding it all together when you’re Hypermobile. Journey2Joy
Disclaimer
This blog is for general informational purposes only and does not constitute the practice of medicine, nursing, or other professional health care services, including the giving of medical advice, and no provider/patient relationship is formed. The use of information on this blog or materials linked from this blog is at the user’s own risk. The content of this blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard or delay in obtaining medical advice for any medical condition they may have and should seek the assistance of their health care professionals for any such conditions.