Becoming my own advocate

Posted December 26, 2018

by Suzanne H.

I’ve lived most of my life believing my unusual flexibility made for a fun sideshow at a party and a star student in the occasional yoga or pilates class. My husband never understood how I or why I could casually stand in the first position, feet pointed out like a ballerina. Frankly, neither could I. Anyone who has ever held my hand has commented how squishy and elastic-like my skin is. To me, it just felt normal. When I received a scoliosis diagnosis as a teenager, my parents deliberated, “to brace or not to brace.” Somehow, I avoided it.

For 47 years, the signs and symptoms of EDS were there, I just didn’t have a diagnosis.

Everything changed in December 2013. I was ice skating with my husband and youngest son who was 10 at the time and I fell hard on my lumbar spine. An MRI later showed that I herniated a disc. The pain was like nothing I had ever felt.

My doctor suggested treating my injury with injections and physical therapy. This helped–for a short while. For the next 3 years, I went through rounds of injections and physical therapy. I tried a variety of pain medications. Nothing relieved the pain for good. In fact, the pain got worse. My mobility decreased. I begged for a new MRI.

In 2016, my chiropractor ordered a new MRI. It showed further deterioration. I went in for a surgical consult and I was admitted immediately for a microdiscectomy and laminectomy on L4/L5 for a badly ruptured disc. At this point, I could barely walk.

As I was recovering, I did not feel as well as I thought I should have. I made many calls to my surgeon. He told me I needed time. Six months later, my surgeon agreed that I should not still be in pain. He ordered an MRI.

According to my surgeon, my MRI revealed nothing. Yet, I was feeling worse than before my surgery. He said there was nothing he could do for me. He referred me to pain management.

I had a very compassionate pain management doctor. But, I did not want this to be my answer. I was determined to figure out the cause for this pain. I had to be my own advocate, my own detective. My search brought me to doctors in three states.

A semi-retired doctor who specializes in spinal pain was the first to suggest I might have a connective tissue disease. He recommended I see a geneticist. I found one close to home.

In May 2017, at the age of 47, I was diagnosed with a hypermobility spectrum disorder. This diagnosis explains my entire life. 

Since June 2017, I have been in physical therapy 3 days a week. I am stronger, but not without pain. I feel like I have a long way to go before I can be released from physical therapy and manage this on my own. I am hopeful that day will come.

I don’t know why I have this condition, but I know there is a reason. Perhaps it is to help ensure it doesn’t take the next person 47 years to get a diagnosis.

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