Welcome back to the Bendy Club blog! This week, we’re focusing on a fundamental aspect of health that often gets overlooked: sleep. For those living with Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS), quality sleep is crucial for managing symptoms and enhancing overall well-being. Let’s dive into why sleep is so important and explore practical tips for better rest.
Why This Matters
Sleep is essential for physical and mental health. It allows the body to repair and regenerate tissues, consolidate memories, and regulate hormones. For individuals with EDS and Hypermobility, who often experience chronic pain, fatigue, and other symptoms, getting enough restful sleep can significantly impact their quality of life.
The Importance of Sleep with EDS and Hypermobility
- Pain Management: Quality sleep can help reduce the perception of pain and improve pain tolerance. Poor sleep, on the other hand, can exacerbate pain and make it harder to manage daily activities. This can compound meaning a poor night of sleep can increase pain levels making sleep in the future more difficult.
- Energy Levels: Adequate rest is crucial for maintaining energy levels. Those with HSD and EDS often struggle with chronic fatigue, and proper sleep can help mitigate this symptom.
- Mental Health: Sleep is vital for mental health. It helps regulate mood, reduce stress, and improve cognitive function. Lack of sleep can lead to increased anxiety and depression, which are common in those with chronic illnesses.
- Maintaining Diet: A single night of poor sleep can lead people to crave higher carbohydrate and fatty foods. The increase in cortisol that is experienced with poor sleep will encourage people to seek out higher calorie foods. This makes sticking to a diet more difficult.
- Immune Function: Sleep boosts the immune system, helping the body fend off illnesses and recover more quickly from infections.
- Overall Well-being: Good sleep supports overall health, from cardiovascular health to hormone regulation. It’s a cornerstone of a healthy lifestyle.
Action Steps for Better Rest
- Establish a Sleep Routine: Go to bed and wake up at the same time every day, even on weekends. This helps regulate your body’s internal clock. This cannot be over stated. If you want to have quality sleep you must do this. Sleeping less during the week and trying to recover lost sleep on the weekend is a recipe for disaster.
- Create a Sleep-Inducing Environment: Make your bedroom a sanctuary for sleep. Keep it cool, dark, and quiet. Consider using blackout curtains, earplugs, or a white noise machine. Make sure that your body knows that the bedroom is for sleep. Do not lie awake in your bed on your phone or tablet. This is training your brain that the bed is a place to be a awake making quality sleep even more difficult.
- Invest in a Good Mattress and Pillows: A supportive mattress and pillows can make a significant difference in comfort and pain levels. Look for products designed to support joint and spine health.
- Limit Blue Light Before Bed: Exposure to blue light from screens can interfere with your sleep. Try to avoid screens for at least an hour before bed. When using screens prior to bed there are tools you can use to block the blue light including blue light blocking glasses, changing to the red light function on your phone, a program called F.lux on your computer, and using red LED bulbs in your bedroom and bathroom at night.
- Keep it Cool: The ideal sleep temperature is around 60-70 degrees F depending on where you live and your personal comfort levels. To initiate sleep your core body temperature needs to cool by about 2-3 degrees which can be accomplished in a couple of different ways. One option is to set the air conditioning down slightly so the bedroom is cool. If you tend to overheat during the night there are other options like the chilipad which is going to precisely control your beds’ temperature. One counter intuitive option is to take a hot shower or bath before bed to heat your body up temporarily, but when you get out you will dissipate the heat quickly because all of your blood vessels are at the surface of your skin. This will then cause your body temperature to drop that 2-3 degrees quickly getting you ready for deep restorative sleep.
- Practice Relaxation Techniques: Incorporate relaxation techniques into your bedtime routine. This could include deep breathing exercises, progressive muscle relaxation, or meditation.
- Stay Active: Regular physical activity can improve sleep quality. However, avoid vigorous exercise close to bedtime, as it can be over stimulating.
- Watch Your Diet: Avoid large meals, caffeine, and alcohol close to bedtime. These can disrupt your sleep. Instead, opt for a light snack if you’re hungry before bed.
- Manage Pain: If pain is keeping you awake, speak with your healthcare provider about pain management strategies that can help you sleep better.
Patient Story: Lisa’s Path to Better Sleep
Lisa, living with EDS, struggled with chronic pain and fatigue, making it difficult for her to get restful sleep. After consulting with her healthcare provider and making a few adjustments to her sleep routine, including investing in a supportive mattress, really focusing on having a consistent sleep schedule, and practicing relaxation techniques, she noticed a significant improvement. Her quality of life improved dramatically giving her more energy and making her chronic body pain less intense.
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 and discover new strategies for effective healthcare management.
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Thank you for being part of the Bendy Club. Together, we can make a difference!
Warm regards,
The Hypermobile Solutions Team
References
Walker, M. P. (2018). Why we sleep: The new science of sleep and dreams. Penguin Books. https://www.amazon.com/Why-We-Sleep-Unlocking-Dreams/dp/1501144316
Sleep problems in EDS and HSD. The Ehlers Danlos Society. (2023, November 21). https://www.ehlers-danlos.com/sleep/
How to sleep better. Harvard Health. (n.d.). https://www.health.harvard.edu/topics/sleep
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.