Perhaps it’s too harsh to say yoga ruined my life, but it has given me chronic pain and joint issues that forced me to completely change my daily routine. All you yogis out there might be wondering- how is that possible? Well, unbeknownst to me, yoga is the last thing a person with my condition should do. Problem is, I didn’t know I had a condition, so I can hardly blame yoga for that.
A little background
Since adolescence, I’ve had trouble with various joints: tendonitis in my shoulders, bursitis in my hips, costochondritis (chest wall/rib inflammation) that lasted for years, pain and inflammation in the base of my thumbs, bunions in my feet along with bouts of plantar fasciitis and a large neuroma in my right foot. I’ve been in physical therapy, undergone ultrasound therapies, surgeries, taken medications, and received countless cortisone shots to alleviate pain.
While all the other kids were playing soccer, softball, or basketball, I was practicing piano. I’ve just never been good at sports. I’m clumsy, slow, and uncoordinated. However, as I’ve aged I’ve realized that in order to maintain my weight and stay healthy I need to exercise. A few years ago, I began walking and then running, but that led me to more intense issues with my feet and legs, so I decided to take up something low impact. Like yoga.
A Yogi’s Life
On New Year’s Day 2017, I resolved to practice yoga every day. I could do yoga at home by watching it on YouTube with Adriene as my instructor, and I jumped in headfirst. January went by and I didn’t miss a beat. From the get-go, I was bending deeper, stretching further, and contorting my body into binds beyond what I was seeing on the screen.
In order to see what my body was capable of, I challenged myself to go further into the practice. Yoga was my new jam and I was good at it. Really good. I was thrilled to finally do something physically that others found challenging, or even impossible.
But then…
By March, I realized something was wrong when my lower back erupted in pain. Then my hands, and thumbs specifically, began to scream at me. My ankles and neck were the next to have issues. I felt like I was literally falling apart. The pain forced me to quit doing yoga altogether.
Maybe it’s my diet?
I’ve heard it said that a person’s diet can contribute to joint pain and inflammation, so I jumped on the Whole30 bandwagon and strictly adhered for the full 30 days. But, in the end, my pain was no better. My hands, in particular, continued to be troubling. In addition to thumb pain, the middle finger on my right hand, without injury, was swollen and painful. As a professional piano player, these symptoms were frightening.
On to the doctor’s office
I made an appointment with my doctor who ordered blood work and X-rays which came back normal. There wasn’t much else he could do but prescribe rest and anti-inflammatories.
A sense of defeat enveloped me as I left his office. On the outside I looked perfectly normal (except for my swollen finger), but how could I be in such pain? Maybe this was all in my head? It was difficult to talk with anyone about what I was experiencing, so I tucked away that part of myself as I always had.
That time when Google actually diagnosed my condition
Then, it hit me. What if there was something to the fact that one of my kids is hypermobile like me? One of my sons can bend his elbows into an inverted “V.” Then, I remembered that a podiatrist way back when mentioned that he thought I might have defective collagen. Armed with this knowledge, I took to Google where I typed in “genetic collagen disorder.” Ehlers-Danlos Syndrome was the first thing to pop up.
Tears poured down my face when I read the symptoms. They fit me to a “t.” I was shaking when I called my doctor’s office who, thankfully, had an appointment later that afternoon. What if everything I’d experienced since I was a kid wasn’t in my head? That the pain was real and that this was the reason?
It seemed as if a light bulb clicked on for my doctor, as well, when I asked, “What if this could be Ehlers-Danlos Syndrome?” Thankfully, he’d heard of the condition and after some quick research referred me to genetics at Mayo Clinic.
Finally, after a lifetime of issues, a diagnosis
Three months later, a geneticist at Mayo Clinic officially diagnosed me with hypermobile Ehlers-Danlos Syndrome (hEDS), a rare connective tissue disorder resulting in lax joints which cause subluxations (partial dislocations) and complete dislocations of joints throughout the body along with a myriad of other issues. Basically, my body lacks the genetic know-how to create collagen which is the foundational protein in ligaments, cartilage, skin, eyes, and more. Not only is joint pain/subluxations/dislocations common, but tight, spastic muscles and chronic fatigue accompany the condition due to the fact that the body has to work harder simply keeping itself together.
I also learned there are six types of Ehlers-Danlos Syndromes with the hypermobile type being the most common.
Additionally, associated with hypermobile Ehlers-Danlos Syndrome are Mast Cell Activation Disorder (MCAD) and Postural orthostatic tachycardia syndrome (POTS) which function as comorbidities of hEDS. MCAD explains why I’ve had chronic hives since 2004.
Breaking up with yoga
So, how did yoga ruin my life? Well, for people with hypermobile Ehlers-Danlos Syndrome, recovery of an over-stretched ligament takes a very long time if recovery is even possible. That means joints are looser than ever causing more subluxations, dislocations, pain, and inflammation. In order to compensate, the muscles surrounding the joint work harder (spasm) to try to keep the joint in place producing chronic pain.
In other words, practicing yoga stretched me out like a rubber band that has now lost its shape. So, while I had joint problems prior to practicing yoga, my issues have dramatically increased since January. My hip partially dislocated dancing at my niece’s wedding in August!
A new routine
There is no cure for this condition, only treatment that involves strengthening the muscles in order to keep joints secure. Kevin Muldowney, P.T., created a therapy protocol for people with hEDS called the Muldowney Method which I have begun to practice. It takes six months to a year for this protocol to be effective and then I’ll need to continue it for the rest of my life. Others with hEDS have experienced dramatic results following this protocol.
In terms of my hands, I’ll need bracing, therapy, and daily practice at the piano in order to keep them in shape. Keeping up my skill is going to take hard work and I’m determined to do just that. Some days are pain-free, but many days are not.
As much as I can say yoga ruined my life, I do miss it. I appreciated the mindfulness and self-awareness that came from my practice. I’m finding different ways to continue that, but until I learn more about how my body works, yoga and I had to break up.
Of course, yoga, it wasn’t your fault, and believe me when I say it was definitely me, not you.
For more information on Ehlers-Danlos Syndromes visit The Ehlers Danlos Society.
