Adrienne McGuire's EDS Story

I am thrilled to welcome an amazing guest poster to Defying Gravity, Adrienne McGuire. Check out Adrienne's other compelling reads at Daily Path.

I’m 37 years old and was diagnosed with Ehlers-Danlos Syndrome Type III just last year. I have two children who are both very active and require a lot of physical and emotional attention, which can be a real challenge when you’re suffering, which I have been for most of their lives. I saw many different doctors over the years, all of whom proclaimed that they could find no reason for my pain. Some chalked it up to anxiety; others called it fibromyalgia. But I knew there was something else going on.

Hindsight is 20/20; isn’t that what they always say? Looking back now, I can see that my EDS and POTS problems started when I was young with several fainting spells and a distinct inability to withstand any amount of heat without passing out or nearly passing out. I had horrible shoulder and back pain as young as 13 and have ever since. My neck has been in and out of spasm since age 20. At age 22 my entire body began to twitch, which I now know was from overuse. By 25, my legs were constantly aching so badly I was in tears daily. And that was eleven years before my diagnosis.

Last year I had to say goodbye to the old me and say hello to the new me with limitations when a rheumatologist told me I have the hypermobile form of EDS along with a case of POTS that fluctuates with hormones, as do my other EDS symptoms. As I educated myself about the disorder, I realized that the only way to control the symptoms was to slow down. I had to explain to my children that I can’t do all of the physically active things that we used to do, and that was really tough. I mourned my lost abilities to run, hike, carry my kids, and play on playgrounds. I had a mental break and ended up in the emergency room several times. That was 9 months ago. Today, I am moving forward.

Though I lost some abilities, I gained so much in the way of mental strength and focus. I could no longer work as a legal assistant but I became insanely determined to create a life for myself that worked. By pacing, therapy (both physical and mental), trial and error to find effective medications and supplements, meditation, and learning how to ask for help, I have managed to look at my life with a positive spin. I now wear silver ring splints all the time and other supports as needed for wrists, knees, elbows and neck. I take medications that control my POTS symptoms which means I can get out more, albeit in short bursts. I recently talked to my doctor about getting a wheelchair for long outings. But, overall, when I look at my life now, with a disability, I am so much happier and grounded than I ever was before.

Adrienne McGuire is a writer, website consultant and wellness enthusiast who abandoned the corporate ladder to create a life that worked for her.  Her journey down the road less traveled took her to www.dailypath.com, where she is now an integral part of the writing team.