Living with Ehlers-Danlos Syndrome: Managing Symptoms, POTS, and Endometriosis

Living with Ehlers-Danlos syndrome (EDS) has been a long and challenging journey for Aimee. Her experience has been marked by chronic pain, fatigue, and a quest to find practical treatments.

Ehlers-Danlos syndrome (EDS) is a group of inherited disorders that affect connective tissues — primarily your skin, joints, and blood vessel walls according to the Mayo Clinic.

In addition to managing EDS, Aimee also contends with related conditions like postural orthostatic tachycardia syndrome (POTS), PCOS, and endometriosis, each adding its own layer of challenges to her daily life. These interconnected conditions require constant management, affecting her overall health and well-being. She has also shared her endometriosis and PCOS experience with Her Health Voice to shine a light on the often undiagnosed disorder.

Living with Ehlers-Danlos Syndrome

EDS can cause overly flexible joints, stretchy skin, and fragile tissues, which make healing difficult. For Aimee, the hypermobile form of EDS meant that her joints would dislocate easily, and she often lived in a state of chronic pain. She also developed severe fatigue that left her unable to live the active life she once had.

"I was in so much pain, dizzy, and would pass out. I had to crawl to the bathroom."

"I went from working four jobs, doing online college to work more, and eating super healthy to not being able to get out of bed," Aimee shares. "I was in so much pain, dizzy, and would pass out. I had to crawl to the bathroom."

Like many living with EDS, Aimee struggled to get a diagnosis. Initially, she was misdiagnosed with fibromyalgia, and doctors told her all her tests were normal, despite the debilitating symptoms. It took years of self-advocacy, research, and finally seeing a specialist to get the correct diagnosis.

"I found out that I was misdiagnosed with fibromyalgia and actually had Ehlers-Danlos syndrome, a connective tissue disorder. It doesn't show up on blood tests, so it was really hard to diagnose," Aimee explains

The Physical Impact of EDS

EDS causes a range of physical challenges for Aimee. Beyond the hypermobility and pain, her skin is unusually stretchy, and she’s prone to other connective tissue-related issues, such as prolapse and digestive problems.

"My skin is super stretchy, which is kind of funny—I don't get wrinkles. But inside, it wreaks havoc on everything. I pretty much always feel like I have the flu, with achy muscles and fatigue all day, every day," Aimee shares.

Her EDS also triggered severe digestive issues, leading her to try extreme dietary changes, including the Lion Diet—a regimen of only beef, salt, and water—to manage her gut symptoms. "My gut was so messed up that I only ate those three things for six months," she explains. "It was hard, but it made my gut feel the happiest."

Managing EDS Symptoms and Related Conditions

Aimee’s EDS also brought on POTS, a condition that causes dizziness and fainting when standing up for long periods. She manages this with compression socks, increased salt intake, and plenty of water. "If I don’t wear my compression socks, I can’t get out of bed," she says. "I even sit in the shower because I can’t stand for long."

"I’m in pain all the time."

EDS affects nearly every aspect of Aimee’s life, from her daily activities to her ability to care for her family. "I feel fatigued all day, every day, and if I get up to do the dishes, I need to lay down after. I’m in pain all the time," she says.

Her journey to managing these symptoms also included advocating for herself in the medical system. "Even with the EDS diagnosis, I had to figure it out myself and go to my doctor saying, 'I know I have this.' I had the testing, I knew it was right, but it took years of research and advocating for myself to get there."

EDS and Mental Health

The mental toll of chronic illness has been a major part of Aimee’s journey. Like many people with EDS, she’s had to cope with anxiety, depression, and the frustration of being gaslighted by medical professionals.

"Chronic illness is not just about the physical pain. The mental side of it—the anxiety, depression, and feeling gaslighted by doctors—that’s what I work on in my community," Aimee shares. "I want to help others find purpose and fun, even when they’re in pain."

Aimee now runs a community for people with chronic illnesses, offering support and advice on coping with the mental and emotional aspects of living with chronic conditions. Through her YouTube channel and online platforms, she shares her journey and helps others find joy and meaning in their lives, despite the struggles.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a group of genetic disorders that affect connective tissues, which provide strength and elasticity to your body’s structures according to the Ehlers-Danlos Society. The most common type, hypermobile EDS, causes joints to be overly flexible, leading to frequent joint dislocations and early-onset arthritis. It also affects the skin, making it stretchy, fragile, and slow to heal from wounds.

Other common symptoms of EDS include:

• Overly flexible joints: The connective tissue that holds joints together is looser, causing joints to move beyond the normal range of motion. Joint pain and frequent dislocations are common.

• Stretchy skin: Weakened connective tissue allows the skin to stretch more than usual, often feeling soft and velvety.

• Fragile skin: Skin tears easily and doesn’t heal well. Stitches used to close wounds may tear out, leading to gaping scars.

In more severe cases, such as vascular EDS, the walls of blood vessels, intestines, or the uterus can rupture, leading to life-threatening complications.

Aimee’s Advice for Others with EDS

Aimee encourages others dealing with EDS or other chronic conditions to continue advocating for themselves. "If something doesn’t feel right, push for answers. You know your body better than anyone, and you deserve to be heard."

Her journey is a testament to her strength and determination, showing that while living with EDS is incredibly challenging, it’s possible to find light, meaning, and hope along the way.

Living with Ehlers-Danlos Syndrome: Managing Symptoms, POTS, and Endometriosis