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Understanding What Supplements to Take for hEDS

4 min read

Over 86% of patients with Hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) experience some form of gastrointestinal symptoms, which can lead to micronutrient deficiencies. Understanding what supplements to take for hEDS can be a crucial part of a comprehensive management strategy, working alongside medical care to address specific symptoms like joint pain, fatigue, and autonomic dysfunction.

Quick Summary

This guide examines key vitamins, minerals, and other supplements that can help manage symptoms of hypermobile Ehlers-Danlos syndrome, including joint support, fatigue, and issues related to connective tissue. It highlights the importance of addressing common deficiencies under professional medical supervision.

Key Points

  • Consult a Professional: Always work with an hEDS-aware doctor or registered dietitian before starting new supplements to create a safe and effective, personalized plan.

  • Address Deficiencies: Many people with hEDS have nutrient deficiencies, particularly in Vitamin C, Vitamin D, Magnesium, and Iron, which can worsen symptoms like fatigue and pain.

  • Manage Fatigue: Coenzyme Q10 and B vitamins (especially B12) are often used to help combat the severe fatigue common in hEDS.

  • Support Joint Health: Supplements like Glucosamine, Chondroitin, and Omega-3 fatty acids can provide support for joints and help manage pain and inflammation.

  • Collagen Supplements Aren't a Cure: Ingesting collagen does not fix the underlying genetic defect in hEDS, but ensuring adequate overall protein intake is important.

  • Consider Related Conditions: If you also have POTS or GI issues, supplements like electrolytes (for POTS) and probiotics (for gut health) may be necessary.

  • Focus on Foundational Nutrition: While supplements can help, a balanced, whole-foods diet is the foundation for optimal health and symptom management.

In This Article

Navigating the world of supplements for a complex condition like hypermobile Ehlers-Danlos Syndrome (hEDS) can be challenging. Because hEDS is a genetic disorder affecting collagen, supplementation is not a cure, but a complementary approach to help the body function optimally and mitigate symptoms. Many people with hEDS and co-morbidities like Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) experience a range of symptoms, including fatigue, pain, and gastrointestinal issues, which can benefit from targeted nutritional support.

Essential Vitamins for Connective Tissue and Overall Health

Vitamin C: A Key Cofactor

Vitamin C is a vital cofactor in the synthesis of collagen, the very protein that is structurally defective in hEDS. While supplementation cannot fix the underlying genetic issue, ensuring adequate Vitamin C intake can support the body's attempts to produce the best possible quality of collagen. It also acts as an antioxidant and is important for wound healing, which can be an issue for many with hEDS.

Vitamin D: For Bone and Immune Support

Low vitamin D levels are common in individuals with hEDS. This fat-soluble vitamin plays a crucial role in calcium absorption, bone mineralization, and immune function, all of which are important for managing hypermobility. However, testing for optimal levels and working with a doctor is key, as over-supplementation should be avoided.

B Vitamins: Fuelling the Body

B vitamins are essential for energy metabolism, and deficiencies can contribute to the pervasive fatigue experienced by many with hEDS. Vitamin B12 deficiency has also been linked to Postural Orthostatic Tachycardia Syndrome (POTS), a common comorbidity, and supplementation may help reduce orthostatic symptoms.

Key Minerals for Neuromuscular and Joint Function

Magnesium: The 'Master Mineral'

Magnesium plays a critical role in over 300 bodily processes and is particularly important for hEDS patients due to its effects on muscle and nerve function. Deficiency can exacerbate pain, cramps, and fatigue. Different forms of magnesium have specific benefits:

  • Magnesium Glycinate: Often used for its calming properties and potential help with sleep.
  • Magnesium Oxide: A form known for its laxative effects, which can help with constipation common in hEDS.
  • Magnesium L-Threonate: May be beneficial for neurological issues and mood.

Iron: Combating Fatigue

Iron deficiency and anemia are common in those with hEDS, often contributing significantly to fatigue and weakness. Since iron is vital for oxygen transport in the blood, identifying and correcting low levels can lead to a notable improvement in energy and overall well-being.

Targeted Supplements for Symptom Management

Coenzyme Q10 (CoQ10)

This antioxidant is involved in energy production within cells, and many hEDS patients report positive effects, particularly on fatigue and muscle weakness. Research is still emerging, but anecdotal evidence suggests it can be a valuable supplement for symptom relief.

Glucosamine and Chondroitin

Glucosamine is a building block for connective tissue and joints, and supplementation may help support cartilage health and reduce joint pain. When combined with chondroitin, another component of cartilage, it can be an effective support for joint integrity, particularly with degenerative issues.

Omega-3 Fatty Acids

Omega-3 fatty acids, found in fish oil and certain seeds, have anti-inflammatory properties that can help reduce joint pain and overall inflammation. Since chronic inflammation can be a contributing factor to pain in hEDS, this can be a valuable addition to a supplement protocol.

The Role of Collagen Supplements in hEDS: A Critical Consideration

Why Supplemental Collagen Isn't a 'Fix'

There is a common misconception that taking collagen supplements can repair the faulty collagen in hEDS. However, hEDS is a genetic condition, meaning the body's DNA blueprint for producing collagen is incorrect. When you ingest collagen, the body breaks it down into individual amino acids before it can be used to build new proteins. The body's faulty genetic instructions will then be used to rebuild new collagen, regardless of the source of amino acids.

While collagen supplements won't fix the underlying issue, they can be beneficial for individuals who have a low overall protein intake. Adequate protein is essential for providing the body with the building blocks it needs for tissue repair and general health.

Supplements for Related Conditions (POTS and GI Issues)

For those with POTS, managing blood volume is key. Electrolyte supplements, especially those containing extra sodium, can be very helpful. Salt tablets and increased fluid intake are commonly recommended to help with the associated symptoms. For GI issues, probiotics and soluble fiber can help optimize the gut microbiome and improve nutrient absorption.

Comparison of Key hEDS Supplements

Supplement Primary Benefit Supporting Research/Evidence
Vitamin C Collagen synthesis, wound healing, antioxidant Essential cofactor for collagen synthesis; potential for improved bruising and bleeding.
Vitamin D3 Bone health, immune function, mood Low levels common in hEDS patients; crucial for calcium absorption and bone density.
Magnesium Muscle and nerve function, pain relief, constipation Deficiency can exacerbate fatigue, muscle cramps, and pain.
Coenzyme Q10 Fatigue, muscle weakness, energy production Often reported to alleviate fatigue and muscle weakness.
Glucosamine Joint pain, connective tissue support Aids in repairing and maintaining connective tissue and joints.
Omega-3s Anti-inflammatory, joint health Helps reduce inflammation and joint pain.

Conclusion: A Personalized Approach is Best

While supplements can provide meaningful support for managing hEDS symptoms, they are not a one-size-fits-all solution. A personalized, patient-centered approach is essential. Working with an hEDS-aware healthcare team, including a doctor and a registered dietitian, can help you identify specific deficiencies and create a safe and effective supplementation plan. Remember that nutritional support is just one component of managing hEDS, alongside other therapies like physical therapy, pain management, and hydration strategies.

For more information and resources on managing hEDS, visit The Ehlers Danlos Society: https://www.ehlers-danlos.com/.

Note: Always consult with a qualified healthcare professional before starting any new supplement regimen.

Frequently Asked Questions

Collagen supplements do not fix the underlying genetic issue in hEDS. The body breaks down all ingested protein, including collagen, into amino acids. It then uses its faulty genetic blueprint to build new, defective collagen, so adding more collagen doesn't correct the problem.

Yes, many individuals with hEDS find magnesium supplements helpful for managing muscle pain and cramping. A deficiency in magnesium is common and can exacerbate these symptoms. Different forms, like magnesium glycinate, can be used for muscle and nerve support.

Fatigue in hEDS may be helped by supplements like Coenzyme Q10, B vitamins (especially B12), and iron, particularly if deficiencies are present. CoQ10 supports cellular energy production, while B vitamins are crucial for metabolism.

Supplements often used for joint pain include Glucosamine and Chondroitin, which support connective tissue, and Omega-3 fatty acids, which have anti-inflammatory effects. These should be considered as part of a broader management plan that includes physical therapy.

Individuals with POTS (Postural Orthostatic Tachycardia Syndrome) often benefit from increased salt and fluid intake to help increase blood volume. Salt tablets or electrolyte supplements can be recommended by a doctor to manage symptoms, especially with adequate hydration.

Yes, it is highly recommended to get a blood test to check for specific nutrient deficiencies before starting supplements. This allows for targeted supplementation and prevents over-dosing on a nutrient you may not need, which can sometimes be harmful.

Yes, to support the gastrointestinal issues common in hEDS, probiotics, prebiotics, and soluble fiber can be helpful. These can help optimize the gut microbiome and potentially improve nutrient absorption.

References

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Medical Disclaimer

This content is for informational purposes only and should not replace professional medical advice.