Emotional Support Sisters

In my younger years I had quite a few body contortionist tricks. My favorite one was doing a backbend and then walking my hands through my legs and having my body follow until I was laying on my stomach. I can’t do that one anymore, but I can still pop my shoulder out of place on command and my pinkies are double jointed. I have these abilities because I have joint hypermobility syndrome.

Joint hypermobility is when joints have more than average movement. People with hypermobility are casually called double-jointed. They can bend and twist in unusual ways. Hypermobility can be great for dancers or gymnasts, where flexibility is vital. Joint hypermobility can be asymptomatic. When it is asymptomatic there is nothing to worry about. When it is symptomatic it is judged on a spectrum and has different symptoms.

Hypermobility is divided into 3 groups: generalized, peripheral (hands and feet), or localized (a few joints in the same area). I have generalized joint hypermobility so that is what I’ll focus on. The Beighton score is used to diagnose generalized hypermobility. It tests joint movement in the pinkies, thumbs, knees, elbows, and spine. You get a point for each joint that extends beyond a certain point. There are a total of 9 points. A score of 5 for adults, 6 for children, and 4 for adults over the age of 50 qualify a person for generalized hypermobility syndrome. If anyone is wondering, my score is 9/9.

Hypermobility becomes a disorder when it starts to cause certain problems. They include joint dislocations, joint pain, loss of joint function, cartilage tear, joint degeneration, soft tissue injury, chronic pain, and poor body awareness. A few symptoms that are not directly related to the joints, but are common are fatigue, headaches, GI issues, autonomic dysfunction (unable to regulate different bodily functions), and anxiety.

So what does this look like in real life? It can look a little different for everyone so I’m going to share what it looks like for me.

I started showing symptoms at the ripe old age of 2ish ( I don’t know the exact age because I don’t remember it) with dislocation injuries. I made an escape attempt at a department store and my mom grabbed my arm. Me going one way and my mom going another dislocated my right elbow. My next elbow dislocation happened while being swung around in circles. The final dislocation happened while playing ring around the rosie. I injured my knee at 9 and 18. I injured my ankle the first time when I was 12 and had surgery on it when I was 18. I have tendonitis,which hypermobility increases likelihood of, in my wrist and thumbs from playing the piano.

I did gymnastics and excelled. I could do amazing backbends, my splits were beautiful. I was a regular Gumby. I enjoyed swing dance in high school and could do some pretty awesome tricks because of my flexibility.

As I’ve gotten older the coolness has worn off. My muscles are hypertonic, or really tight because my body is trying to hold itself together. I get regular tension headaches. Sleeping is difficult. My shoulder pops out of place fairly easily. When that happens while I’m sleeping it is very uncomfortable when I wake up and can be hard to put back in. My hips are regularly malaligned. I snap crackle and pop when I start moving. Re-reading this I sound like an 80-year-old complaining of all their ailments, but I am nowhere near 80.

I do have some tips and tricks that help me be more comfortable. I use ice and heat on a regular basis. I have a back brace, a wrist brace, a hip brace, and an ankle brace that I use when things get too painful so that whatever is hurting can take a break. I go to a chiropractor that adjusts using gentle chiropractors so that my ligaments don’t get stretched out further. Massages whether from a human or machine provide temporary relief to tight muscles. I take turmeric regularly to help with inflammation. If all of that doesn’t help then I take an over-the-counter pain reliever.

Hypermobility has been and will continue to be a journey. As I get older, my body changes and so do my coping mechanisms. I continue to research and learn and try to improve my quality of life.

This is for informational purposes only. I am not a doctor so I can’t give medical advice.

Here are some websites if you are interested in learning more.
https://www.ehlers-danlos.com/what-is-hsd/#1668011041344-828c1721-0f66
https://www.collegehillpilatespt.com/2020/05/21/eds-and-tight-muscles-if-my-joints-are-so-loose-why-do-i-feel-so-tight/