Hi Friend
For many in the chronic illness community, the word "hypermobility" is often dismissed by doctors with a shrug and a comment like, "Oh, you’re just double-jointed."
But if you are living with the "Trifecta" (hEDS, MCAS, and POTS), you know that being "bendy" is the least of your problems. The real issue is that your "scaffolding" (collagen) is failing to support your internal systems, leading to the widespread pain of Fibromyalgia and the profound exhaustion of ME/CFS.
Because hEDS is so underdiagnosed, many patients wait over a decade for answers. Today, I want to pull back the curtain on how hEDS is actually diagnosed and what the official 2017 Ehlers-Danlos Society criteria actually look like.
The Diagnostic "Gold Standard"
The first thing to understand is that unlike the rarer types of EDS (like Vascular or Classical), there is currently no genetic test or blood test for hypermobile EDS (hEDS).
The diagnosis is purely clinical. This means a specialist must go through a specific three-part checklist. If you don't meet all three, you may instead be diagnosed with HSD (Hypermobility Spectrum Disorder), which carries many of the same systemic burdens but doesn't hit every "check" on the hEDS list.
The 3 Pillars of hEDS Diagnosis (2017 Criteria)
To be diagnosed with hEDS, you must satisfy all three of the following criteria:
Criterion 1: Generalised Joint Hypermobility (The Beighton Score)
This is the "Circus Tricks" test most people recognise. You are scored on 9 points:
Can you place your palms flat on the floor with straight legs? (1 point)
Do your elbows hyperextend? (1 point each)
Do your knees hyperextend? (1 point each)
Can you touch your thumb to your forearm? (1 point each)
Can you bend your pinky finger back past 90 degrees? (1 point each)
The Threshold: Adults usually need a 5 out of 9 to pass this stage. (Note: The score requirement drops as you get older, as we naturally stiffen with age).
Criterion 2: Systemic Involvement & Family History
This is where we "Join the Dots" beyond the joints. You must meet TWO of the following sub-sections:
Part A (Systemic Signs): You need at least 5 features from a list of 12. These include things like: unusually soft/velvety skin, mild skin hyperextensibility, unexplained stretch marks, hernias, pelvic organ prolapse, dental crowding, or a high-arched palate.
Part B (Family History): Having a first-degree relative (parent or sibling) who independently meets the 2017 criteria.
Part C (Musculoskeletal Complications): Chronic widespread pain for >3 months OR recurrent joint dislocations in the absence of trauma.
Criterion 3: Exclusion of Other Conditions
A doctor must confirm that your symptoms aren't better explained by other connective tissue disorders (like Marfan Syndrome) or autoimmune conditions (like Rheumatoid Arthritis).
Joining the Dots: The hEDS "Domino Effect"
At MEND, we don't look at your symptoms in silos. We look at how hEDS acts as the "anchor" for these other conditions:
1. The link to POTS (The "Stretchy Veins" Problem)
If you have hEDS, your blood vessels are made of that same "stretchy" collagen. When you stand up, your veins are too compliant; they stretch and allow blood to pool in your legs. Your heart has to race to pump that blood back to your brain. This isn't a heart defect—it's a structural failure of your "pipes."
2. The link to MCAS (The "Shaky House" Problem)
Mast cells are the security guards of your immune system, and they live inside your connective tissue. In hEDS, the connective tissue is constantly shifting and micro-tearing. This puts your mast cells on high alert. When the "house" is constantly shaking, the "security guards" start firing off inflammatory chemicals at everything. This is why hEDS and MCAS are almost always found together.
3. The link to Fibromyalgia & ME/CFS (The "Nervous System" Problem)
If your joints are unstable, your muscles are in a state of permanent "guarding" to keep you together. This leads to chronic, widespread pain. Furthermore, when your body is structurally unstable, your brain stays in a state of High Alarm.
This "Alarm" consumes massive amounts of energy, leading to the profound exhaustion we call ME/CFS. Many people diagnosed with "Fibromyalgia" are actually dealing with the systemic neural-inflammation caused by hEDS.
Why a Diagnosis Matters
Receiving an hEDS diagnosis isn't just about "getting another label." It changes the way you manage your health:
It explains why you are "sensitive" to medications.
It explains why standard exercise (like high-impact cardio) makes you crash.
It validates that your pain is physical, not "functional" or "in your head."
How MEND Clinic Joins the Dots
At MEND, we believe that a diagnosis is only the beginning. Once you know your scaffolding is unstable, you can finally stop "fighting" your body and start supporting it. As we can start connecting the dots and look for, diagnose and treat associated conditons’s.
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Stay Well
Disclaimer: The information provided in this newsletter is for educational and informational purposes only and is not intended as medical advice, diagnosis, or treatment. Accessing this content does not establish a doctor-patient relationship between you and MEND Clinic. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this newsletter. Reliance on any information provided here is solely at your own risk.
