My hypermobility history, Part 2: “You need to always keep your muscles strong”

Hi everyone,

So this post picks up where my last post left off… where a doctor told me, at age 19, that I needed to “always keep your muscles strong… or else you’re going to have a very difficult life.”

I didn’t understand what he meant, didn’t understand that sorrowful, grave look on his face.

I didn’t understand why he was looking at me the way you might look at someone to whom something awful had befallen.

It couldn’t be that hard, right? I loved to exercise. Fitness was my thing. Now that I’d had the surgery to fix my lower leg injury, everything was going to fall back into place.

But it did not.

Now I know why. Now, over a decade later, after multiple failed attempts at PT, seeing doctors, even a stint at one of Boston’s most “prestigious” pain clinics (like the “Harvard” of pain clinics)…

There was always something wrong. I’d go to do a bicep curl with a one-pount weight– or with no weight at all– and it would hurt. Prior to my injury, when I was still in top athletic shape, I could do those with 10 pounds.

No one could really explain why, except to say that I must have tried to re-start the exercise with a higher weight than my body could handle. Fine, I guessed that made sense… except how could “no weight at all” be too hard for my body to handle?

It hurt to type. At a computer. For any length of time at all. This dull pain would build up in the front of my wrists. I learned that if I used the right ergonomic keyboard, with a keyboard tray at just the right height, I could work around it. But why had this never been a problem before?

My knees hurt. Sometimes a dull ache, sometimes a grinding and a stabbing. It took a long, long time to get a diagnosis for that (chrondromalacia patella). In this process I learned I had multiple risk factors for having knee problems (my knees were hypermobile and bent too far backwards; I was also knock-kneed). But no one ever thought to examine the rest of my joints…

I sprained my ankle once. I stumbled, and my ankle wobbled back and forth, on a tree root. It was maybe a minor sprain. But it hurt, a lot. Every time I took a step, my body screamed at me not to use that foot. In all earnestness, I asked the doctor who was covering that day if I should get a note excusing me from returning to work. He looked at me as if I was crazy.

For so long, I wondered what was wrong with me.

It did help me a lot to learn about pain neurophysiology education— to understand the idea that sometimes, after a traumatic experience (such as a leg injury and a subsequent surgery) the nervous system can go into wind-up mode. It thinks every little thing is trying to hurt you, and decides to make you feel pain accordingly.

Learning about this process– and how to help calm it down– did make a big difference in raising my level of function.

But I always wondered if something else was wrong.

How could having just one leg injury, and not being able to exercise for so long, give me such a completely different injury?

After all, my injury was only in one place. It wasn’t in my hands, my wrists, my elbows, my knees.

Sometimes, other people could tell, too. My kinesiology professor once had that same alarmed look on her face that Dr. Steiner had once had, after I’d told her my story.

“There has to be something else,” she said. “That doesn’t add up. People don’t just get one injury, have a surgery, and then never be able to get back into exercise for their whole life. Something else has to be wrong.”

I didn’t want to believe her, wanted to think she was the one who was wrong. But I knew that look on her face, knew that her decades of treating patients, teaching university-level classes, and managing graduate students had given her the intuitive sense to know…

Something else was wrong.

Now, I know.

I am hypermobile. And this is what it means to be hypermobile.

What Dr. Steiner picked up on, all those years ago, is that my ligaments and other connective tissue are “stretchy.” It’s a genetic difference– hypermobile people’s bodies produce collagen, fibrin, and certain other structural proteins differently.

Sometimes, the problem can be hidden, as it was hidden in me, as a super-strong high school athlete. At that time, I’d had enough muscle strength to more or less compensate for it.

But that first serious injury I got– compartment syndrome– was so debilitating. It hurt to even stand up for a few minutes at a time. Of course, in that year or so that I waited to have surgery, I lost much of the muscle strength that I had.

That is when my joints stopped functioning properly– when I no longer had the right baseline of strength to keep them in place.

Mysterious elbow pain? Hypermobility.

My weird wrist pain? Hypermobility.

Knee pain that seemed to come out of nowhere? Hypermobility.

Abnormally pronounced reaction to a minor ankle sprain? Hypermobility.

I’ll be explaining more about hypermobility in future posts– about everything I’ve learned, my experiences, and how the treatment recommendations for hypermobile people are different. (I’m still very much learning about this myself, but as they say, teach what you are learning!).

The thing is, like SI joint dysfunction, when you find the right people to really help you understand it, it can make all the difference in the world.

Thanks to a really great treatment team I am finally beginning to understand some of the things that happened to me, and it’s all starting to make sense now.

For more on hypermobility, you can check out the posts I’ve written so far:

How I learned I’m hypermobile

My hypermobility history, Part 1: The first time someone ever told me I was hypermobile

New England area hypermobility resources

Stay tuned for more to come!