Effective Treatment for Hypermobile Ehlers-Danlos Syndrome

Understanding hEDS Disease

If you or a loved one has been diagnosed with Ehlers-Danlos Syndrome (EDS), it's important to understand the condition and its specific subtypes. One subtype of EDS is Hypermobile Ehlers-Danlos Syndrome (hEDS).

What is Ehlers-Danlos Syndrome (EDS)?

Ehlers-Danlos Syndrome (EDS) refers to a group of genetic connective tissue disorders that affect the body's production of collagen, a protein responsible for providing strength and elasticity to various tissues. There are 13 different subtypes of EDS, each with its own specific symptoms and characteristics; affecting the skin, joints, blood vessels, and other organs.

Individuals with EDS often have joint hypermobility, which means their joints can move beyond the normal range of motion. They may also experience stretchy skin, fragile blood vessels, and other symptoms specific to the subtype of EDS they have.

Hypermobile Ehlers-Danlos Syndrome (hEDS)

One of the most common EDS subtype is Hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is usually characterized by joint hypermobility, often accompanied by chronic pain and other related symptoms.

While joint hypermobility is a common feature in hEDS, it's important to note that not all individuals with hypermobility have hEDS.

hEDS is diagnosed based on a person's medical history and a physical examination, as there are currently no genetic tests to confirm the the condition. Diagnosis requires the presence of characteristic symptoms and a thorough evaluation by a healthcare professional.

Some key features of hEDS include:

• Joint hypermobility: This is the primary characteristic of hEDS. It refers to the ability of joints to move beyond the normal range of motion. This can lead to joint instability, frequent dislocations, and chronic pain.
• Chronic pain: Individuals with hEDS often experience chronic pain, which can be widespread and affect different areas of the body. Pain management strategies, such as medication and physical therapy, are often a crucial part of the treatment plan.
• Skin involvement: While not as prominent as in other subtypes of EDS, individuals with hEDS may have skin that is slightly stretchy or velvety to the touch.
• Additional symptoms: hEDS can also present with other symptoms such as gastrointestinal issues, autonomic dysfunction, and fatigue. These symptoms can vary in severity and may require individualized management.

It's important to keep in mind that the symptoms and severity of hEDS can vary among individuals. Consulting with a healthcare professional who specializes in hEDS is essential for an accurate diagnosis. To learn more about the symptoms associated with EDS, check out our article on Ehlers-Danlos Syndrome symptoms.

In the next section, we will explore the treatment options available for hEDS, including a multidisciplinary approach that addresses the various aspects of the condition.

Treatment Options for Hypermobile Ehlers-Danlos Syndrome Symptoms

If you have been diagnosed with hEDS, there are various treatment options available to help manage your symptoms and improve your quality of life. It's important to approach treatment from a multidisciplinary perspective, addressing both the physical and emotional aspects of the condition. Treatment for hEDS typically involves a combination of medication and pain management, as well as physical therapy and exercise.

Multidisciplinary Approach to Treatment

Managing hEDS often requires a multidisciplinary approach, involving primary care physician, rheumatologist, orthopedic specialist, physical therapist, pain management specialist, and mental health professional. Collaborating with these experts ensures a comprehensive and personalized treatment plan that targets your specific needs.

Medication and Pain Management

Medication and pain management strategies play a crucial role in alleviating the symptoms associated with hEDS. The specific medications prescribed will depend on the nature and severity of your symptoms.

Pain relievers, such as nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen, or topical analgesics, may be recommended to help manage mild to moderate joint and muscle pain. Anticonvulsants, antidepressants, or muscle relaxants may be prescribed to help manage muscle contractions and chronic pain, modulating pain signals in the nervous system, and improving sleep quality and overall function.

Its important to consult with your healthcare professional to determine the most suitable medications for you, as some medications may be contraindicated for individuals with hEDS.

For more information on medications to avoid, refer to our article on essential medications for Ehlers-Danlos Syndrome.

Physical Therapy and Exercise

Physical therapy and exercise are integral components of managing hEDS. A physical therapist with experience in treating individuals with hEDS can create a customized exercise program that focuses on strengthening the muscles around your joints, improving stability, and increasing flexibility.

Gentle exercises, such as low-impact aerobic activities, stretching, and resistance training, can help improve joint function and reduce the risk of injuries. For more information on physical therapy for hEDS, refer to our article on Ehlers-Danlos Syndrome physical therapy.

Remember to consult with your healthcare professional before starting any exercise program to ensure its suitability for your condition. They can provide guidance on the appropriate intensity and frequency of exercise, taking into consideration your individual limitations.

By adopting a multidisciplinary approach to treatment and incorporating medication, pain management techniques, physical therapy, and exercise, you can effectively manage your hEDS symptoms and improve your overall well-being.

Cognitive Behavior Therapy (CBT)

The international consortium for EDS recommends utilizing cognitive behavioral therapy (CBT) in EDS patients. CBT has proven efficacy in EDS-related disorders such as anxiety, depression, and fibromyalgia, and can help people with EDS to lead a better quality of life with their untreatable disorder.

Transcutaneous Electrical Nerve Stimulation

Transcutaneous electrical nerve stimulation (TENS) is a type of pain relief therapy. It uses a low-voltage electrical current to block pain or change your perception of it. This therapy has been shown to have a significant effect on pain reduction for EDS patients.

Seek RELIEF® for Hypermobile Ehlers-Danlos Syndrome‍

Studies have linked hEDS with chronic pain linked to changes in the fascia, a collagen-rich connective tissue, that surrounds muscles, joints, and other structures throughout the body, and plays a vital role in structural support and musculoskeletal movement. 

In hEDS, an excess amount of collagen may be synthesized in the fascia, causing abnormal fascial thickness and adhesions. Adhered and thickened fascia often leads to less support and more stress on nearby musculoskeletal structures - leading to chronic pain, joint instability, and diminished functional activity among hEDS patients.^1,2,3,4

RELIEF® combines ultrasound guidance and hydrodissection to help release fascia restrictions and abnormalities related to hEDS, which may help reduce inflammation, promote tissue healing, and ease chronic pain for hEDS patients.

As hEDS is not a particularly well understood condition and medicine continues to strive for the right treatment options, the RELIEF® procedure may be a promising option for hEDS patients.

Lifestyle Adjustments for hEDS

Managing lifestyle adjustments is an essential aspect of living with hEDS. While there is no cure for hEDS, making certain changes in your diet, daily activities, and prioritizing mental health support can greatly enhance your overall well-being. Here are some key considerations:

Diet and Nutrition Considerations

Maintaining a balanced diet and paying attention to nutrition is crucial for individuals with hEDS. While there are no specific dietary guidelines for hEDS, there are some general principles that can be beneficial. Here are some factors to consider:

• Hydration: Staying adequately hydrated is essential for overall health. Aim to drink plenty of water throughout the day.
• Anti-inflammatory Foods: Including foods with anti-inflammatory properties, such as fruits, vegetables, whole grains, and omega-3 fatty acids, can help manage inflammation that may be associated with hEDS.
• Vitamin and Mineral Intake: Ensure that you are getting a variety of vitamins and minerals through a well-rounded diet. Consult with a healthcare professional or a registered dietitian to determine if any specific supplements are necessary.

It's important to remember that dietary choices may vary depending on individual needs and any coexisting conditions. If you have specific concerns about your diet, consult with a healthcare professional or a registered dietitian for personalized guidance.

Managing Daily Activities

Managing daily activities is essential for minimizing symptom flare-ups and maintaining functionality. Here are some tips for managing daily activities with hEDS:

• Pacing: Practice pacing yourself to avoid overexertion. Break tasks into smaller, manageable segments and take regular breaks to prevent fatigue and pain.
• Ergonomics: Ensure that your environment is ergonomically designed to minimize strain on your joints. Adjust your workspace, use supportive cushions, and consider assistive devices if needed.
• Assistive Devices: Utilize assistive devices such as braces, splints, or mobility aids to provide support and reduce joint stress during daily activities.

By making adjustments and incorporating adaptive strategies, you can help reduce the impact of hEDS on your daily life and improve overall functionality.

Mental Health Support

Coping with a chronic condition like hEDS can take a toll on your mental health. It is important to prioritize your mental well-being and seek appropriate support. Here are some steps you can take:

• Support Groups: Connect with support groups or online communities that focus on hEDS. Sharing experiences and insights with others who understand your challenges can provide valuable emotional support.
• Healthcare Professionals: Consult with healthcare professionals, such as psychologists or counselors, who specialize in chronic pain and illness. They can provide guidance and support in managing the emotional aspects of living with hEDS.
• Self-Care: Incorporate self-care activities into your routine to reduce stress and promote mental well-being. This may include activities such as mindfulness exercises, relaxation techniques, or engaging in hobbies that bring you joy.

Remember, seeking mental health support is just as important as addressing the physical aspects of hEDS. For more information on treatments and management strategies for hEDS, visit our article on Ehlers-Danlos syndrome treatments.

Researching and Staying Informed

Staying informed about the latest research, medical advancements, and treatment options is essential for managing hEDS. By keeping up-to-date, you can make informed decisions regarding your treatment and advocate for yourself more effectively.

Research reputable sources such as medical journals, scientific publications, and websites dedicated to EDS and hEDS. The Ehlers-Danlos Society is an excellent resource for educational materials, research updates, and support.

Being well-informed about hEDS can empower you to actively participate in your treatment and seek the care you deserve.

‍Contact us today to schedule a consultation and learn more about how RELIEF® may be able to help manage hEDS symptoms - without the need for steroids, medication, surgery, anesthesia, or post-procedure immobilization.