Essential Medication Guide for Ehlers-Danlos Syndrome

Understanding Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a heritable disorder of connective tissue that affects individuals worldwide. EDS is characterized by various symptoms and has a significant impact on the quality of life of those affected.

Symptoms and Diagnosis

The symptoms of Ehlers-Danlos Syndrome can vary among individuals and depend on the specific type of EDS. Common symptoms include joint hypermobility, stretchy skin, easy bruising, and joint and muscle pain. Other symptoms may include chronic fatigue, gastrointestinal issues, and cardiovascular abnormalities. For a more thorough breakdown of symptoms of this condition, refer to our article Ehlers-Danlos Syndrome symptoms.

Diagnosing EDS involves a comprehensive evaluation of medical history, physical examination, and genetic testing. The 2017 International Classification for EDS outlines specific criteria for diagnosing each subtype of EDS. However, for hypermobile Ehlers-Danlos Syndrome (hEDS), the most common subtype of EDS, there is currently no identified genetic marker and diagnosis is primarily based on clinical evaluation.

Impact on Quality of Life

Ehlers-Danlos Syndrome can significantly impact the quality of life of individuals affected by the condition. Chronic pain is a common manifestation of EDS and has a profound effect on physical, social, and psychological health. Fatigue is another prevalent symptom reported by individuals with EDS, affecting daily functioning and overall well-being (PubMed Central).

The impact of EDS extends beyond physical symptoms. Individuals with EDS may face limitations in their social life, leading to social isolation due to difficulties in keeping up with social groups and making short-term plans. Additionally, EDS can affect sexual life, with challenges related to positions during intercourse and decreased desire due to pain and fatigue.

It is crucial for individuals with EDS to receive comprehensive care that addresses their specific needs. This can involve a multidisciplinary approach, where a team of healthcare professionals collaborates to provide patient-centered treatment. By addressing the symptoms and challenges associated with EDS, individuals can better manage their condition and improve their overall quality of life.

Medications to Avoid

If you have been diagnosed with Ehlers-Danlos syndrome (EDS), it's important to be aware of certain medications that may pose risks or complications due to the unique characteristics of the condition. The following medications should be avoided or used with caution:

Opioids

Although opioids are commonly prescribed for EDS pain, they can lead to opioid use disorder (OUD) and overdose. Implementing opioid tapering plans is crucial to ensure the most effective and safe pain management strategies (NCBI). It is important to consult with your healthcare provider for alternative pain management strategies that are safer for your condition.

Fluoroquinolone Antibiotics

In December 2018, the FDA issued a warning that fluoroquinolone antibiotics, such as ciprofloxacin (Cipro), can increase the risk of aortic aneurysms or dissections in patients with Ehlers-Danlos syndrome (EDS) and other genetic conditions that affect blood vessels.

Anticoagulants and Antiplatelet Agents

For individuals with EDS, there is an increased risk of bruising and injury due to the fragility of blood vessels and tissues. Therefore, medications that increase the risk of bleeding, such as anticoagulants and antiplatelet agents, should be used with caution or avoided altogether.

It is crucial to discuss the use of these medications with your healthcare provider to assess the potential risks and benefits and to explore alternative treatment options, if necessary.

In the next sections, we will explore alternative pain management strategies for individuals with EDS, as well as the importance of a comprehensive care approach that involves patient-centered treatment and multidisciplinary team collaboration.

Pain Management Strategies

Pain in EDS manifests in various forms including generalized body pain, soft-tissue pain, joint pain, neuropathic pain, headaches, GI pain, TMJ pain, etc. In women specifically, severe dysmenorrhea, vulvodynia, and dyspareunia may also occur. When it comes to managing the chronic pain associated with Ehlers-Danlos Syndrome, a comprehensive approach is key.^1,2,3

NSAIDs

Nonsteroidal anti-inflammatory drugs (NSAIDs), such as Ibuprofen or Naproxen, may help reduce inflammation and relieve minor to moderate pain associated with tissue damage or joint and musculoskeletal pain.

However, it's important to note that NSAIDs should be used with caution due to potential gastrointestinal and renal side effects long term, especially for EDS patients that are already suffering gastrointestinal symptoms due to connective tissue fragility caused by the condition.

Acetaminophen

This over-the-counter pain reliever can help alleviate mild to moderate pain. It is important to follow the recommended dosage guidelines and consult with your healthcare provider, especially if you have any underlying liver conditions.

Anticonvulsants and Antidepressants

These medications may be prescribed to manage neuropathic pain, which is commonly experienced by individuals with EDS. They work by modulating pain signals in the nervous system and can be beneficial in reducing pain, improve sleep quality and improving overall function.

It's important to consult with your healthcare provider to determine the most suitable medications for your specific pain management needs. They will consider your individual symptoms and medical history to develop a personalized treatment plan.

Topical Analgesics

Lidocaine or CBD patches are short-lasting drugs for local pain relief, and can be useful when joints misalign, gum pain, and in serious cases of painful intercourse (dyspareunia).

Muscle Relaxants

Some drugs, or combinations of muscle relaxants, such as baclofen, cyclobenzaprine, or tizanidine, may improve uncontrolled muscle contractions and pain that occurs in EDS. However, routine use is discouraged due to theoretical risk of increasing joint instability and consequently worsening muscle pain.

Hormonal Control

For those with painful periods or worsening EDS symptoms around menstruation, some findings suggest when menstrual disorders are treated and alleviated by a combination of hormonal contraceptives or progestin-only contraceptives, EDS symptoms improve and women report less fatigue.⁴

Opioid Use & Opioid Tapering Plans

Opioids, such as tramadol, should be used cautiously in individuals with EDS due to connective tissue vulnerabilities and potential risks of dependency. For individuals who have been on long-term opioid therapy, personalized plans for opioid tapering may be appropriate.

Tapering opioids involves gradually reducing the dosage under the guidance of a healthcare professional. This approach helps to minimize potential dangers associated with long-term opioid use, such as misuse and overdose. Proper tapering is essential to ensure a safe transition and minimize the risk of withdrawal symptoms and increased pain.

A comprehensive pain management approach for EDS should address both the physical and psychological aspects of pain. This may involve a combination of non-opioid medications, physical therapy, psychological support, and other modalities tailored to your specific needs.

Alternative Care Approach

When it comes to managing Ehlers-Danlos Syndrome (EDS), taking a comprehensive care approach alongside the use of medication is essential to address the complexities of the condition and ensure the best possible outcomes.

Physical Therapy

Physical therapy may involve a combination of exercises, stretches, and manual therapy techniques. Regular participation in these exercises can help manage symptoms, prevent injuries, and improve overall physical function. For more information on physical therapy for EDS, refer to our article on Ehlers-Danlos Syndrome physical therapy.

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.²

Seek RELIEF® for Hypermobile Ehlers-Danlos Syndrome‍

Studies have linked the hypermobile Ehlers-Danlos Syndrome (hEDS) subtype 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

Focusing on addressing fascial abnormalities, RELIEF® may help in relieving pain and discomfort caused by fascia-related issues in hEDS patients. RELIEF® combines ultrasound guidance and hydrodissection to release fascia restrictions, reduce inflammation, and promote tissue healing - without the need for steroids, medication, surgery, anesthesia, or post-procedure immobilization.

By utilizing a patient-centered treatment approach and fostering multidisciplinary team collaboration, individuals with EDS can receive comprehensive care that addresses their unique needs and challenges. This approach aims to enhance the quality of life for individuals with EDS and improve their overall well-being. For more information on treatments for EDS, please refer to our article on Ehlers-Danlos syndrome treatments.

Contact us today to schedule a consultation and learn more about how RELIEF® may be able to help manage hEDS symptoms.

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