Welcome back to the Bendy Club blog! This week, we’re diving into an intriguing topic that affects many in our community: the connection between autoimmune disease and hypermobility. Understanding this link is crucial for better management and improving your overall quality of life.
The Autoimmunity-Hypermobility Link
Research suggests that there is a significant overlap between hypermobility spectrum disorders (HSD), Ehlers-Danlos syndrome (EDS), and autoimmune conditions. Autoimmune diseases occur when the immune system mistakenly attacks the body’s own tissues, and hypermobile individuals often experience symptoms that hint at underlying autoimmune issues. There are more than 80 different autoimmune diseases making diagnosis difficult especially in the context of someone with hypermobility. Research has shown that autoimmune diseases are more likely to be present in individuals with EDS than the general population. That being said, those with HSD/EDS may never go on to develop autoimmune diseases, and at the same time those without HDS/EDS can develop autoimmune diseases.
Why This Matters
Recognizing the connection between autoimmunity and hypermobility can lead to more comprehensive care. Addressing both conditions simultaneously can improve symptom management and enhance your overall well-being.
Common Autoimmune Conditions
- Rheumatoid Arthritis (RA): Characterized by joint inflammation and pain, RA can exacerbate symptoms of hypermobility.
- Lupus: An autoimmune disease that can cause widespread inflammation and tissue damage, affecting the skin, joints, and organs.
- Sjogren’s Syndrome: This condition primarily affects the glands that produce tears and saliva leading to dry eyes and dry mouth.
- Hashimoto’s Thyroiditis: An autoimmune disorder affecting the thyroid gland, leading to symptoms such as fatigue, weight gain, and joint pain.
Recognizing the Symptoms
Symptoms of autoimmune conditions can overlap with those of hypermobility, making diagnosis challenging. Common symptoms include:
- Chronic fatigue
- Joint pain and swelling
- Skin rashes
- Digestive issues
- Unexplained fever
- Persistent dry eyes or mouth
Action Steps for Managing Both Conditions
- Seek a Comprehensive Diagnosis: Work with healthcare professionals who understand both hypermobility and autoimmune disease. They can help you get a thorough diagnosis and tailor a treatment plan. This would generally be a rheumatologist. They would perform comprehensive blood work to evaluate for numerous different autoimmune diseases
- Monitor Your Symptoms: Keep a detailed journal of your symptoms to help identify patterns and triggers. This can assist your healthcare provider in fine-tuning your treatment.
- Adopt an Anti-Inflammatory Diet: Foods rich in omega-3 fatty acids, antioxidants, and fiber can help reduce inflammation. Avoid processed foods, sugar, and excessive caffeine. Diet can have a dramatic impact on the symptoms and progression of autoimmune diseases. One great example is the Wahls Protocol for multiple sclerosis. Dr. Wahls has helped thousands with MS gain control of their disease and even reverse it in many cases. With any dietary changes and autoimmune disease it is necessary to be very consistent for a prolonged period of time before you could expect to see significant changes in symptoms.
- Stay Hydrated: Proper hydration supports overall health and can alleviate some symptoms of both hypermobility and autoimmune conditions. For most average sized individuals that is around 2-3L per day.
- Exercise Wisely: Engage in low-impact exercises like swimming or Pilates to strengthen muscles without stressing joints. Always consult with a knowledgeable physical therapist.
- Manage Stress: Chronic stress can exacerbate autoimmune symptoms. Incorporate stress-reducing practices like mindfulness, meditation, or gentle yoga. There are other philosophies linking trauma and autoimmune disease. One good book is The Myth of Normal by Gabor Maté which details this connection and possible ways to heal.
- Regular Follow-ups: Maintain regular check-ups with your healthcare provider to monitor your condition and adjust treatments as needed. If needed medications can be very beneficial for autoimmune disease, but unfortunately they have the tendency to look effectiveness overtime requiring constant monitoring and changes to medications. Establishing with a good rheumatologist that you can connect with is key to managing your symptoms overtime.
Patient Story
One of our community members, Emily, struggled with joint pain and chronic fatigue for years. Initially diagnosed with HSD, she later developed symptoms suggestive of an autoimmune condition. After extensive testing, Emily was diagnosed with both EDS and lupus. With a comprehensive management plan, including dietary changes, and specific anti-inflammatory medications, that are the main treatment for lupus, Emily has seen a significant improvement in her symptoms. In general anti-inflammatory medications like Celebrex, Ibuprofen, Motrin, Meloxicam, etc are not very effective at dealing with pain from hypermobility because it is not due to an inflammatory pathology, but when someone has a systemic inflammatory autoimmune condition these medications can be highly effective. Her journey highlights the importance of understanding the autoimmunity-hypermobility connection and seeking appropriate 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.
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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
The Ehlers-Danlos Society. Autoimmunity and EDS. https://www.ehlers-danlos.com/wp-content/uploads/2022/02/Allergy_Summit_Series_Clair_Francomano_Autoimmune_Rheumatic.pdf
American College of Rheumatology. The Immune System and Rheumatic Disease. https://rheumatology.org/immune-system-rheumatic-disease
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.