Welcome to the Bendy Club blog! Today, we’re focusing on coping mechanisms for chronic pain, a common challenge for individuals with Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS). Chronic pain can be debilitating, affecting every aspect of your life. However, there are effective strategies to help manage pain and improve your quality of life. Let’s explore how you can take control of your well-being.
Understanding Chronic Pain in HSD/EDS
Chronic pain in HSD and EDS often stems from joint instability, muscle strain, and other related issues. Pain can be persistent, varying in intensity and location. Understanding the nature of your pain is the first step towards effective management. By recognizing triggers and patterns, you can develop a personalized pain management plan.
Practical Coping Mechanisms
1. Mind-Body Techniques
Mind-body practices such as meditation, deep breathing exercises, and progressive muscle relaxation can significantly reduce pain perception and improve mental health. Apps like Headspace can guide you through these practices. They have a specific course on chronic pain that can give you control over the sensations you are experiencing. Other techniques include cognitive behavioral therapy (CBT) which is a talk therapy teaching individuals about different ways to respond to chronic pain through their thoughts and feelings. This is best done with the help of a professional therapist.
2. Physical Therapy
Engage in a tailored physical therapy program designed for hypermobility patients. Focus on strengthening muscles around unstable joints and improving overall body mechanics. Regular physical therapy can prevent further injury and reduce pain over time. Having daily routines for your therapy is great, but you should also have a quick easy routine when pain levels increase. Work with your PT/OT to build this routine and practice it so you know exactly what to do and how to do it correctly.
3. Heat and Cold Therapy
Applying heat can relax tense muscles and improve blood flow, while cold packs can reduce inflammation and numb pain. Alternate between heat and cold to find what works best for your specific pain.
4. Pain Journaling
Keep a detailed journal of your pain episodes. Note down the intensity, duration, and possible triggers of your pain. This can help you identify patterns and make necessary lifestyle adjustments. Can you improve your workspace, do you need a more supportive chair at home or work, do you need assistive devices in the kitchen when cooking, do certain foods affect your GI system? All of these could be possible triggers for your pain. What modifications can you make to break the pain cycle?
5. Balanced Diet and Hydration
Proper nutrition and hydration can play a significant role in managing chronic pain. Anti-inflammatory foods, adequate protein intake, and staying well-hydrated can support overall health and reduce pain levels.
Action Steps for Managing Chronic Pain
- Consult with a Specialist: Seek advice from healthcare professionals who understand HSD and EDS. A pain specialist can provide you with personalized strategies and treatments.
- Stay Active: Engage in low-impact exercises such as swimming, walking, or using a stationary bike. Regular physical activity can help maintain joint function and reduce pain. Don’t forget to have a dedicated program for building strength and stability. This should be the cornerstone of all HDS/EDS therapy programs.
- Use Assistive Devices: Braces, supports, and ergonomic tools can help manage pain by providing stability to hypermobile joints.
- Prioritize Rest: Ensure you get adequate rest and sleep. Quality sleep is crucial for pain management and overall well-being.
- Join Support Groups: Connect with others who understand your experiences. Support groups can offer emotional support and practical advice.
Patient Story: Emily’s Journey to Pain Management
Emily, a 29-year-old with EDS, struggled with chronic pain for years. It affected her work, relationships, and mental health. After working with us, Emily started incorporating a physical therapy program to build strength and stability, she started using and SI belt with activity, she adjusted her diet to include more anti-inflammatory foods and ensured she stayed hydrated, and we started a medication called Gastrocrom (Cromolyn) to manage her Mast Cell Dysfunction. Over time, Emily noticed a significant reduction in her pain levels and an improvement in her overall well-being. Last time I spoke with her she said this is the best she has felt in years. Her story is a testament to the power of a comprehensive pain management plan.
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.
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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 your condition effectively. 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
References
Godman, H. (2020, August 24). 5 ways to ease pain using the mind-body connection. Harvard Health. https://www.health.harvard.edu/blog/5-ways-to-ease-pain-using-the-mind-body-connection-2020082420788
Pain management in the ehlers-danlos syndromes (for non-experts). The Ehlers Danlos Society. (2022b, March 15). https://www.ehlers-danlos.com/2017-eds-classification-non-experts/pain-management-ehlers-danlos-syndromes/
U.S. Department of Health and Human Services. (n.d.). Chronic pain: What you need to know. National Center for Complementary and Integrative Health. https://www.nccih.nih.gov/health/chronic-pain-what-you-need-to-know
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.