9. Breaking Down the SPIDER Outcome Measure for EDS and Hypermobility

If you’ve ever felt like your EDS or hypermobility symptoms are “all over the place” — from joint pain to digestive issues to fatigue — this episode is for you.

April Patterson dives into the SPIDER outcome measure, a powerful tool that captures the full-body impact of connective tissue disorders like Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). Unlike traditional assessments that focus only on joint flexibility, the SPIDER evaluates eight key systems including neuromuscular, cardiac, gastrointestinal, and psychological domains.

Learn how this questionnaire helps identify symptom patterns, puts lived experience at the centre of care, and guides better treatment decisions — so patients and practitioners aren’t left guessing.

Whether you’re a clinician, a patient, or supporting someone with EDS, this episode will help you better understand what’s really going on beneath the surface.

Take the SPIDER test here: april-uqnuykdm.scoreapp.com

Disclaimer: Before making any health changes, consult with a healthcare professional.

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Transcript

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Welcome to the RX Physiotherapy Podcast, your go-to destination for all things physio, rehab, health and wellness. I'm April Patterson, and each week we will dive deep into fascinating topics within the health world. From physiotherapy to nutrition and beyond. We cover it all. So sit back, relax, and enjoy the journey as we explore the exciting world of health and wellness. Let's get started. So welcome back friends to the RX Physio and Hustle Heart Podcast. Today we're gonna break down. The spider outcome measure for individuals who have EDS or hypermobility. So you've probably heard the phrase before, if you can't connect the issues, think connective tissues. And that's because connective tissue is everywhere. It holds your body together quite literally. So when someone with EDS or hypermobility spectrum disorder, both of which affect the connective tissue, the symptoms can feel totally random. They can have joint pain, digestive issues. Can feel faint. Their heart's racing, bladder problems, feel anxious, depressed, and weird, fatigue after basically doing nothing. It's not in their head, it's in their collagen. Which is the protein that gives structure and stretch to everything from joints to organs. So what is the spider? It's the type of questionnaire that helps people with high mobility track the real life impact of their symptoms across their entire body. It measures eight key systems, neuromuscular, which is your joint, your strength, coordination, pain, fatigue, cardiac disorder, anomia, like dizziness, and heart racing. Gastrointestinal symptoms, urogenital symptoms, which is your bla bladder anxiety and depression. So instead of just looking at how bendy your elbows are or how far your mouth opens, the spider asks how much of this is affecting your daily life? Just school, work, social stuff. Hobbies and basic tasks, which is gold because e, d, s and hypermobility are multi-systemic conditions. But most, most care healthcare systems treat them like they're just about the joints. So how does it work? There's 31 questions and you score from zero, which is not present to a hundred, which is disabling. Then the answers are grouped into domains such as pain, fatigue, anxiety. And averaged into scores out of about a hundred. So if your fatigue domain scores at 75, it means it's having a marked impact on your daily life. So the spider is so powerful for individuals 'cause it shows that it's not, that they're symptoms that they're experiencing, although they seem disconnected. Are actually part of a bigger picture. So it shows patterns across different symptoms. So the individual that's feels confused because they're feeling fatigued and dizzy, they've got bladder issues, but then they also have chronic pain. The understanding while these different systems are being affected, but what it also does is it puts the lived the person in front of you is experience at the center of their care. So say if an individual with EDS came to me and. Their main issue was gut symptoms. I would be referring them on to the appropriate specialist to help them with this first. And although I might be able to do things to help along the process, I'm understanding that the biggest struggle for that individual currently is their gut. So I can give them breathing patterns and, um, exercises to help reduce stress, and that can help move the the gut. But if they have severe SIBO or food intolerances going on that I haven't been assessed, then my impact is gonna be a lot smaller than what a gastro technologist can help them with. So again, I love this quote, and I don't know where I heard it. I've heard it multiple different. Places. If someone has joint pain, gut issues, and dizziness and mental health struggles, don't try to treat them all as like eight separate problems. Treat them like a person with connective tissue condition. And if you can't connect the issues, think connective tissues. So as a physio, I remember it's not all about strengthening the glutes. It's not all about core activation. It's about helping someone feel safe, capable, and connected from head to toe. And if you're someone living with EDS or hyper mobility, and this is coming from someone who also has lived experience in this area, you are not imagining it. You're not lazy, you are not too complicated. Your body is just playing with a different set of rules, and we're finally learning how to support it. So you can download. Despite from the EDS society, I would recommend if you are starting with a new health practitioner, to take that into them and show them where you're currently ranking. And also use that outcome measure to guide you as to what's the first thing to tick off first.'cause sometimes we can feel like we're going to a billion different specialists, and where do I start to start with the thing that's affecting you the most? And in my experience, one thing gets better and they all feed into each other because you are a whole person. And if you've got severe gut issues going on, no wonder you feel fatigued all the time. So once you get on top of that gut health, you won't feel as fatigued. Which is gonna help with pain, which is gonna help with everything. So the thing that's affecting you the most, the thing we start with, and just remember that life's a journey and we just get 1% better every day. And thank you so much for listening today. If you are looking for a physio, we have availabilities, and all of our physios are trained in EDS, you'll be assured that you will be in a supportive environment. You won't be gaslit. We'll put you at the front of treatment and we will guide you the best we can based on what we have at the current time in terms of research. So thank you so much and see you in the next podcast.