Are you one of those people who could do all sorts of acrobatic, super-flexible party tricks in middle school? While seemingly harmless, hypermobile joints can sometimes come with a hidden twist: wonky immune system and underlying chronic conditions. As an immunologist with wonky immune issues, I'm here to dig into that surprising connection, drawing on both my scientific background and patient experiences.

Let's Talk Hypermobility

Maybe you've heard that bendiness gets classified as “hypermobility.” It refers to extra flexible joints, often a telltale sign of connective tissue disorders -- those tissues act as your body’s support system and “meat suit.” 😉

But there is a range of hypermobility. In recent years, we've heard even more discussion about Hypermobile Ehlers-Danlos Syndrome (hEDS).

Common signs and symptoms that may point to this include:

• Extra flexible joints ("double-jointedness")
• Joints that click and crack a lot
• Pain in those joints
• Sprains and dislocations - it's especially important if troubling those knees and ankles.
• Soft, velvety skin that bruises and scars easily.

Hypermobility: The Secret Link to Immune System Issues

While some brush it off to merely being able to do cool party tricks, what if some aren't so lucky and there is also an immune component? Well, some may develop immune dysfunction! This is an umbrella term and includes immune deficiencies that may affect proteins that help protect us, immune system dysregulation, autoimmune issues, and/or those overactive Mast Cells from our MCAS episode.

We can link the dots between two seemingly unrelated conditions, hypermobility and immune dysfunction, thanks to some brilliant minds in research, such as what Dr. Anne Maitland, Brock, and colleagues discovered in 2021 that they’re so connected. In a fascinating research, that particular study found 46% of those suspected of having mast cell activation disease actually had a mast cell activation disorder – a notable overlap. But even more importantly, it showed that those with immunoglobin deficiency also correlated to those with hypermobility. And here are a few ways it may impact you.

Chronic inflammation, a persistent, low-grade activation of your immune system, may contribute to pain and join instability, which makes you wonder:

Okay, What Now? Understanding Testing & Gaining Control

If you're thinking, “Hmmm, some of that resonates with my own story,” what do we then do about these seemingly disjointed systems? What can you and those specialized medical practitioners actually do?

Here's that breakdown for diagnosis:

• First, if hypermobility is part of your history, your doctor might use the Beighton score to assess your joint flexibility across that symptom checklist.
• Getting a good look at your medical and treatment history (remember, every detail is important, because those details give clues into which pathways or even which systems are involved). And a great clinical team will also perform that careful and helpful physical exam.
• To test further for immune system dysfunction, checking a few levels may come next: your infection history, childhood vaccinations, and, of course, your blood levels - those immune system proteins we’ve talked about on previous shows, vaccine antibody levels, and complement levels.

Taking Charge: Treatment & Managing the Whole You

A team approach is key – that’s why I love working with the wonderful colleagues over at PRISM Joint and Spine who really do take that full-body and full humanistic viewpoint. They are the models of how to take a collaborative approach. In the meantime though, here are few areas to prioritize:

• Physical & occupational therapy. To strengthen and mobilize. Also for stabilization and support
• Pain management strategies
• Patient education, knowledge is power!

And don't forget that treatment, if it gets to this point of needing it, for immune dysfunction really depends on the specific deficiency. When you address this complicated puzzle of hypermobility and immune responses, it does so much to empower you – both to advocate for that next step and to trust that your body is capable, strong and resilient, and so you can take back your care, one step at a time.

I was thrilled for the opportunity to join Dr. Sarah Cohen’s practice over at Prism, a specialist in pediatric and adolescent medicine whose whole practice is focused on hypermobility syndromes. She brings so much light to this world of often unseen and under-treated conditions that is definitely worth checking out!

It's About Progress

I also want to remind you of something so important that can affect your Sjogren's or similar situation; in the clinic with my patients, to stay in the here and now, and to practice empathy. Let's try to connect that with the people who are suffering daily with this disease. Now what has been demonstrated to work for them or be efficient? We must remember that it will also take time and hard work.

Now it's your turn! Share in the comments:

What questions do you have about hypermobility and immune dysfunction? What tips have helped you find relief? Do you have any stories about working with a truly effective and understanding health practitioner to share?

I look forward to connecting with you!