Validated Assessments & Tools

You and I alone can't diagnose hypermobility. Only licensed medical providers interpret these assessments for diagnosis or medical decision-making. I do not order tests, change medications, or provide medical clearance, and I always encourage you to review content of our discussions with your licensed clinical team. AND YET... You’re here because the care gap in this wildly complex, poorly defined, and massively impactful arena of healthcare is huge. Patterns relating hypermobility, sensitivity, and many other co-occurring conditions are often missed outside of hypermobility-specialized care. I’ve seen clients from youth through their eighties who had no idea they had long lists of clearly observable hypermobile traits alongside a medical file full of “unlucky” medical mysteries. If you're like my typical clients, you've been searching for answers for years.

You and I can't treat or prescribe. So what are we here to do together? We can get you further in understand and expressing your felt situation, correlating it with categories of research that may be relevant, and gathering data with these high-reliability tools that your current healthcare providers may not even know to look for.

The structured assessments and other tools linked below take a concrete, standardized, and validated look at symptoms, signs, and patterns often missed in hypermobile and/or immunologically sensitive or sensitized bodies. They help you and your local clinicians see your “big picture,” describe your experiences more clearly, track changes over time, and communicate more effectively. Patterns can be elucidated and condensed into a format that helps less-aware doctors recognize common links behind seemingly disparate outcomes.

You’re welcome to complete any or all of these assessments on your own and bring the results and any questions to your doctor. You can also book a session with me if you’d like support understanding their terminology, navigating questions and objections that often come up (such as those listed below), or finding specialists appropriate to whatever the assessments may suggest. Specialist care can provide life-changing observations and treatment options that may not arise elsewhere, but it’s often hard to access quickly and may require travel and/or payment out of pocket. Even with a specialist, you’ll still need a local team that understands your conditions well enough to help with day-to-day concerns. If you find that your current local clinicians are not familiar with the patterns you’re seeing and do not have the bandwidth to learn about them right now, you may want to explore more aware care locally. You can start with this list of practitioners and larger directories. We can also look together at how to build a local team that fits your needs and constraints. If your current care team is ready to learn, please put them in touch. I’ll gladly connect them with free, high-quality training (including continuing education options for medical providers), large international networks of highly aware practitioners generous with their knowledge, our local community, and any additional resources I can locate. (Here’s a printable letter you can use to introduce them to numerous resources directly.)

The following list is still very much a work in progress--hopefully you'll find the list itself useful where resources have not yet been found and linked.

Chemical & Environmental Sensitivities

Various sensitivities are common with and without hypermobility traits. While these have been ignored or disbelieved by many healthcare providers in the past, there are many who now work well with them--often because they've had to learn to work with their own sensitivity.

QEESI & source material
COMPASS-31 & source material
MCAS validated questionaire & source material

Hypermobility: Ehlers-Danlos Syndrome, Hypermobile Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorder, Etc.

This article from The Ehlers-Danlos Society discusses open questions around which hypermobility assessment methods are most useful in screening in all those affected. I focus my tools and guidance on the more commonly missed hypermobility patterns. Certain rarer and more serious hypermobility syndromes like Marfan, Stickler, Loeys-Dietz, and Osteogenesis Imperfecta have clearer genetic and structural red flags that medical teams routinely screen for. Because these fall outside the scope of my deep familiarity, I do not include assessments specifically for them here. However, if you're finding that you score high on hypermobility assessments and these conditions remain undiagnosed, you'll be a few steps further in the right direction showing up to see your doctor with some concrete assessments to show them.

Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS)
Beighton scoring system & technical explanatory material
Hospital del Mar & source
Hakim & Sahota Upper/Lower Extremity Hypermobility Assessment & source
EDS Rarer Types Red Flags table

SIGNS Systemic Features & source

Dysautonomia

Dysautonomia is dysfunction of the autonomic nervous system (ANS). The ANS controls your sweating, heart rate, breathing, blood flow regulation, and much more--many of the normally and rather necessarily automatic functions of your body. Many people's ANS's were disrupted or worsened by Covid. But many who are hypermobile or immunologically sensitive were previously affected; this group has been more likely to experience new ANS dysregulation due to Covid as well. Research has recently been propelled by the broader impact instigated by Covid. Here's a great, central resource: dysautonomiainternational.org.

5PQ & source
Autonomic Composite Symptom Test & source
NASA Lean Test & source
Active Stand Test & source
Heart Rate Variability & source
Lumia device & source (I have no conflicts of interest)

Neurovascular Compression Syndromes

These often come and go in severity and activity status since they depend in many cases in a hypermobile body not on stable, consistent factors like scarring so much as current arrangement of less stable internal organs, active inflammation, and deep impacts of posture, stress, and the like. You can review these assessments for past or intermittent relevance

Median Arcuate Ligament Syndrome
Superior Mesenteric Artery Syndrome
Nutcracker Syndrome

Pelvic Venous Congestion

Unexplained Genitourinary Pain

Vulvodynia/Vestibulodynia "Patient Reported Outcome" measurement tool & technical explanatory material

Endometriosis

Chiari Malformation & Tethered Cord

Less common than many of the preceding conditions, these deserve specialist attention as soon as possible if suspected. They often cause symptoms for years before found and are much more common with hypermobility conditions than without. Treatments exist.

Chiari Malformation
Tethered Cord

Symptoms That May Be Associated With Dietary Limitations

https://pmc.ncbi.nlm.nih.gov/articles/PMC3875022/

"My Team & I Are Ready To Go, But Where...?" - Problem #8146

Your doctors are great. They agree hypermobility may in fact be relevant, but they don't know this world deeply, nor who to send you to.

Solutions:

1) Connect them: I'll connect them to bootcamps and other resources of any scale they're open to, including physician mentors.

2) Learn all you have the bandwidth for: Self-advocacy and professional and/or community support are essential for getting marginalized conditions to appropriate care on an appropriate timeline.

3) Connect with me: I'll offer whatever resources and possible referrals I can even in our first, free fifteen minute consultation. I also offer a long list of doctors locally and in nearby states who are better than average to masterful at working with these conditions. If you'd like, book a consultation or a full session now.

"If This is a Reasonable Possibility, Why Has No One Else Seen It?" - Problem #212

You're not diagnosed. You've searched for answers for years with smart, educated people on your side. Tik-Tok introduced you to EDS/MCAS/etc. You know better than to trust the algorithm. How can you focus your efforts on assessing the relevance of this particular rabbit hole among all the others that look possibly interesting, though it's never yet so much as been brought up?

Solutions:

This topic and all of its crazy interconnections is still niche, still new in the science and thus often missed for years until a true, niche-specific specialized happens to come into the picture. You don't need confidence in your own impressions to try a few of the validated assessments below and see whether they begin to clarify a picture of relevance. If they do, take your results to your doctor and ask what they think... or jump straight to a doctor who's deeper in this particular game.

"This Doesn't Make Sense" - Objection #17

How could such a long list of possible explanations as I'm coming up with via the assessments all be relevant? That's not how it works! I swear I'm not a hypochondriac... (even though some people have suggested it through their eyerolls over the years.)

Solutions:

Of course you're not a hypochondriac! (Or maybe you are? Is that a thing? Whatever....) Look, we're talking about differences in collagen production or structure, in the ability to clear toxins without special methods, in the production of certain chemicals, in how the immune system tends to work and not work for you specifically. All of it happens throughout the body, in every system. So one overarching diagnosis actually encompasses and produces all the other possible periodic or persistent effects. If hypermobility or any of the other important underlying themes are in fact relevant and we can get you into proper care, it's likely that at least some of your many kinds of symptoms can be optimized, medicated, or otherwise treated away.

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