Understanding hypermobility

Okay… this is a post I’ve been meaning to write for a long time. It’s just so important to me, and so complex, that in these times, it’s been hard to find the right time to say it.

But I know it is going to be relevant to so many of you out there, so I thought I would just finally say it.

In the past few months, I’ve been getting answers about some of the things that have been “wrong” in my body, for a long time.

***

As you may know, before SI joint dysfunction, before chronic pain, I was a star high school athlete. I say this not to brag, but to underscore how much things can change.

I ran cross-country and track and, like… I won medals. I placed within the top ten in the state. My relay team competed at Nationals.

People who first met me during my chronic pain days in my 20’s probably wouldn’t be able to believe I was the same person. But…well… I was a machine.

It all changed when I got my first running injury, my junior year of high school. It was called compartment syndrome, and it affects the lower legs.

For two years, I tried conservative treatments and could honestly barely even stand up for long periods of time. By the time I had the surgery two years later, at nineteen, it fixed the injury– but I was extremely weak.

And somehow, I could never bounce back. Things that I could do perfectly before that– bicep curls, deep knee bends– hurt. In my elbows, in my knees. I went to different physical therapists and doctors, only to be told it was in my head. It was a psychological problem.

I did get a lot of answers when I finally learned about something called pain neuroscience education, which I talk a lot on my first, more personal blog, Sunlight in Winter. And that really helped me a lot– learning that, after everything I’d been through– the running, my injury, my surgery– my nervous system was just very confused about what could actually hurt me.

But there was always a piece missing. Why was it, before my injury, I could lift a 10-pound weight into a bicep curl… and now, sometimes it hurt to bend my elbow at all?

In fact, it hurt to do a lot of the things I used to do with no problem at all. In other parts of my body– not just my lower legs, where I’d actually had the injury.

I didn’t realize all along that there actually was an answer.

Somehow, it was missed. It was missed in my early 20’s, and it was missed in my late 20’s after I injured my SI joints.

In fact, it was missed all along… until now.

I have been learning, for the first time, what it means to have hypermobile joints– or, as they say, to “be hypermobile.”

If you have hypermobile joints, it means your body makes connective tissue differently.

There are a range of conditions that fall under this heading of connective tissue disorders. What all of these disorders have in common is that it means our bodies don’t make collagen, or fibrin, or some of the other proteins that make up connective tissue– such as what’s found in our ligaments and tendons– properly.

Our ligaments are stretchier than they’re really meant to be, and don’t do as good of a job holding our joints in place. As a result, we end up using our joints with a greater range of motion than we were meant to have, making us more prone to injury and pain.

Some of these conditions, such as Ehlers-Danlos Syndrome and Marfan Syndrome, can also affect the connective tissue that makes up your internal organs. As a result, they can be quite debilitating and even potentially life-threatening.

However, there are also some conditions at the milder end of the spectrum, such as the condition I believe I have, called benign join hypermobility syndrome. In this case, your internal organs aren’t necessarily affected, and the hypermobility is limited to your joints.

Which is still, of course, debilitating in itself.

Looking back, I can’t believe none of the doctors or physical therapists I saw picked up on it.

Unfortunately, hypermobility– like SI joint dysfunction itself– isn’t a topic that’s very well understood. And it is definitely not covered adequately– if at all– in many health professional graduate programs.

Everything changed when I found Muldowney Physical Therapy.

I started going there last fall because I’d heard they had a good understanding of another health issue that I have, mast cell activation syndrome.

But when I got there, my physical therapist Kathleen started picking up on so many the things “wrong” with my joints that no other physical therapist had been able to explain. 

She was able to tell me why my wrists hurt, why my elbows hurt– the questions that had plagued me since I first started trying to work out again at nineteen.

I’d thought I was going there for just one issue.  But from Kathleen, I began to realize that my chronic pain, years of struggling with SI joint issues, allergies, and mast cell activation syndrome were actually all related.  It’s because it turns out there is a genetic link between all of these conditions.

Kathleen and her husband Kevin specialize in treating joint hypermobility syndromes, such as Ehlers-Danlos.   They didn’t learn about it in grad school– like so many of the truly gifted PT’s, they consciously set out to develop their understanding after seeing many of their patients struggle.

And that is why, even though I set out to find a place that specialized in mast cell, I ended up in a place that specializes in another issue I didn’t know I had– joint hypermobility.

How does this relate to the SI joint?

I know from my conversations with readers that many of you know you’re hypermobile. (I’m so jealous because it seems like many people found out earlier than me!).

However, I also wanted to be sure to put this out there because my suspicion is there are a lot of people struggling with SI joint issues who don’t know they’re hypermobile.

I didn’t know I was hypermobile either.

That’s because people with hypermobile joints can often compensate, at least for a while. For some of us, our muscles are strong enough that it covers up the problem lying underneath.

That’s how, at 15, I could win races and run 40 miles a week — but once I spent those two years waiting to have surgery, I lost my muscle strength, and the underlying problem was revealed. That’s why things that never hurt me before– typing at a computer, trying to do a bicep curl– seemed impossible.

For us, it is harder to recover from an injury like SI joint dysfunction.

Our bodies don’t make our ligaments 100% properly, and as a result, it’s much easier for us to sprain them. And then, you can imagine if the ligaments weren’t made properly, it’s going to be even harder for our body to heal them.

How many times have I heard, or seen, people say it’s “impossible” to sprain the ligaments of the SI joint?

That those ligaments are simply too strong?

I always knew, intuitively, that those statements were not true about my body. How could it be, when I’d just make one wrong move and have the sensation of my SI joint ligaments ripping and stretching like a piece of taffy, as the bones moved out of place?

Now I know it’s because I don’t have normal connective tissue. Now, I just roll my eyes when I hear those statements, because clearly, the people who make them are unaware of the existence of people like me.

I have so much more to say about this in the future…

But for now, I wanted to begin to try to put this out there. If your SI joints seem to move out of alignment way more than any PT understands…

Or if you’re wondering if there might be a connection between your other health issues (chronic pain, digestive problems) and your SI joint dysfunction…

You may be hypermobile.

And, like SI joint dysfunction, I’m happy to say that once you find the right doctors and physical therapists who understand the issue, a lot of things can change for the better.

Muldowney Physical Therapy has helped me begin to understand so much about the relationship between my joint hypermobility, allergies, and mast cell.

And since then, I’ve begun to connect with patient groups and have even discovered a few doctors in the Boston area who are truly experienced with hypermobility. It’s made all the difference in the world to find people who understand the exact issues that I have.

I have so much to say about all this in future posts. For now, check out:

Muldowney Physical Therapy— they are quite honestly my top PT recommendation for all of New England. Whether you have hypermobile joints or not, their knowledge of the SI joints is unparalleled.

Kevin Muldowney’s book Living Life to the Fullest— presents the Muldowney protocol for hypermobile patients working with their own PT’s.  (You can also click here to purchase the downloadable PDF version).  

Ehlers-Danlos Society— have a lot of great info on Ehlers-Danlos as well as other hypermobility spectrum disorders

My Mast Cell Journey blog— It’s taken me a long time to start to write up some of the scientific nitty gritty of mast cell, but I’ve been fortunate enough to see some of the best mast cell doctors in the world, and I’m determined to pass my good luck on.

Stay tuned for more!

 

 

4 thoughts on “Understanding hypermobility

  1. laura Balsley says:

    You never cease to amaze me.

    Thank you for your utmost kindness to keep on sharing what you have learned.. I have gained SO much from you.

    Hugs!!

    Laura

    Like

  2. Lawrence Segel MD says:

    This is a wonderful site I just discovered. My SI saga began in 2003 and I am still plagued with it. I am an MD, but as Christy suggested, we don’t learn very much about SI joint issues in medical school. My biggest word of caution is be very careful receiving “adjustments” if you have lax SI ligaments (more so, with hyper-mobility syndromes). These “high” velocity maneuvers further stretch and can even tear these ligaments. That was my fate after a few treatments. My SI ligaments actually tore and I developed what is called an “upslip” on my left side (the pelvis shifted up, my leg length changed, and my belly button even went off center). I was very disabled for years with difficulty standing in place or walking. Slowly, over the years, I was able to get back some sense of normality with physiotherapy, osteopathy, prolotherapy, walking thru pain with my dogs, etc. But, it is constantly an issue as I get older.
    Your site is a great resource providing knowledge and hope for anyone with this problem.
    Well done!

    Like

  3. ssimpson097 says:

    Hey Christy! Love love LOVE this post. I was recently diagnosed with hypermobility, after years of being denied and deferred by doctors. I also am trying to bring awareness and aide to those affected by it. Keep at it!

    -Sam

    Like

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