Myths and Facts About Hypermobile Ehlers-Danlos Syndrome

Nonexperts often misunderstand diseases like hypermobile Ehlers Danlos Syndrome (EDS). Harmful myths about what it’s like to have this connective tissue disorder can lead to adverse health outcomes, mental health stress, and social alienation for people living with it.

When you and the important people in your life understand the facts about hypermobile EDS, which may be 10 times more common than previously thought, you can focus on managing the real impacts it has on you.

At Alpenglow Pain & Wellness, their practice in Anchorage, Alaska, interventional pain physicians Dr. Nichelle C. Renk and Dr. Mary Beth Calor specialize in EDS treatment and support. Dr. Renk and Dr. Calor are the only specialized EDS provider in the state, and they demystify your symptoms and bases your treatment plan on up-to-date science.

Once you’ve learned the truth behind these common hypermobile EDS myths, you can pursue evidence-based treatment with more confidence.

Myth 1: Hypermobile EDS isn’t that big of a deal

Fact: As a connective tissue disorder, hypermobile EDS affects your entire body, including your blood vessels, skin, and joints. EDS patients are at heightened risk for chronic musculoskeletal pain, as well as depression. It’s absolutely a big deal to adapt to this diagnosis.

Myth 2: People with hypermobile EDS are oversensitive

Fact: People with hypermobile EDS live with several clusters of symptoms that need ongoing attention and care. It’s important to understand that this often-inherited condition doesn’t just mean a person has highly flexible joints.

EDS causes structural problems with the way your body uses the protein collagen. That may mean your joints are hypermobile, increasing your risk of dislocation, arthritis, and chronic joint pain.

EDS patients also often suffer from very stretchy or fragile skin, which can pose challenges for treating injuries and healing from surgery.

You need to be sensitive to your physical limitations when you’re living with a connective tissue disorder. Too much physical stress can cause lasting harm. Dr. Renk and Dr. Calor help you find ways to build physical strength and live a full life while not threatening your resiliency.

Myth 3: You can’t do anything to treat EDS

Fact: You have options when it comes to EDS treatment. Dr. Renk and Dr. Calor review potential treatment plans with you. You may benefit from approaches such as:

Physical and occupational therapy for joints and muscles
Massage therapy
Assistive devices like braces
Pain psychology
Novel, safe medications like low dose naltrexone (LDN), topicals, muscle relaxants, and antihistamine medications
Nutritional support and vitamin supplementation
With appropriate patients, procedures for migraine headaches or spinal or joint pain

Dr. Renk recommends only limited use of other medications for pain management. She supports you in making the lifestyle modifications you need to reduce symptom flare-ups and minimize the health risks you face from your EDS.

Myth 4: Any provider can treat hypermobile EDS

Fact: While the impacts of hypermobile EDS on your body are complex, the right information and approach can lead to successful treatment. You need care from an expert who specializes in EDS.

Contact Dr. Renk and Dr. Calor at Alpenglow Pain & Wellness for your EDS diagnosis and treatment needs. For information and support, schedule your personal consultation by booking online or over the phone today.