Can Older Adults Be Diagnosed With hEDS If Less Flexible?

If your joints have stiffened over time and your current Beighton score is low, it does not automatically exclude a diagnosis of hypermobile Ehlers-Danlos Syndrome (hEDS) ^[1]. The medical community recognizes that flexibility naturally decreases with age, and the official 2017 hEDS diagnostic criteria include specific rules to account for this ^[1][2].

If you are an older adult, or if you have experienced injuries and arthritis that have reduced your range of motion, doctors can evaluate your historical flexibility—how flexible you were as a child or young adult—to determine if you meet the generalized joint hypermobility requirement ^[3][4].

Age-Adjusted Beighton Scores

The Beighton score is a standard physical exam that tests nine points on the body (thumbs, pinkies, elbows, knees, and spine) to measure generalized joint hypermobility ^[5]. Under the 2017 hEDS diagnostic criteria, the threshold for a “positive” score decreases as you age ^[1]:

• Pre-pubertal children and adolescents: 6 or more out of 9
• Puberty through age 50: 5 or more out of 9
• Over age 50: 4 or more out of 9

This adjustment ensures that older adults are not unfairly excluded simply because of natural, age-related changes in their joints.

The 5-Part Questionnaire (5PQ) and Historical Flexibility

Even with these age-adjusted scores, you might fall short of the required Beighton cutoff during an exam today. If your current score is exactly one point below the cutoff for your age group, your doctor can use the Five-Part Questionnaire (5PQ) to assess your past flexibility ^[6][3].

The 5PQ asks:

1. Can you now (or could you ever) place your hands flat on the floor without bending your knees?
2. Can you now (or could you ever) bend your thumb to touch your forearm?
3. As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?
4. As a child or teenager, did your shoulder or kneecap dislocate on more than one occasion?
5. Do you consider yourself “double-jointed”?

If you answer “yes” to at least two of these questions, your past flexibility is considered sufficient to meet the generalized joint hypermobility requirement ^[3][4]. The 5PQ does not add points to your Beighton score; it provides historical context that supports the clinical evaluation ^[3]. If your score is two or more points below the cutoff, the 5PQ cannot override the exam, but your doctor should still consider other joints (like hips and shoulders) to fully understand your history ^[5][7].

Why Joints Stiffen Over Time

It is common for people with hEDS to experience a loss of range of motion as they age ^[1]. If your Beighton score is lower now, it may be due to:

• Degenerative Changes: Conditions like osteoarthritis or adhesive capsulitis (frozen shoulder) can cause stiffness and limit joint movement ^[8].
• Injuries and Surgeries: Past dislocations, sprains, or joint operations can create scar tissue that physically restricts how far a joint can bend ^[9].
• Muscle Guarding and Pain: If moving a joint hurts, or if your body is subconsciously trying to prevent a dislocation, your muscles may involuntarily tighten up (muscle guarding) and restrict your range of motion ^[9]. For example, tight hamstrings can prevent someone with hEDS from touching the floor during the Beighton test ^[9].

It can be invalidating to be told your exam is “normal” or “stiff” after years of joint instability. Providing context about your injuries, pain, and prior flexibility helps clinicians understand why a specific joint may no longer bend as it once did. You may want to record which joints were unusually flexible, list surgeries or arthritis diagnoses, and bring old photographs showing prior flexibility to your appointment.

The Full Diagnostic Picture

Meeting the hypermobility requirement is only the first step. hEDS is currently a clinical diagnosis (meaning there is no single blood or genetic test to confirm it), and it requires more than just being flexible ^[10][11]. Under the 2017 criteria, you must also meet at least two of the following three feature groups ^[12][10]:

1. Systemic features: A specific combination of defined connective tissue signs, such as unusually soft or stretchy skin, unexplained stretch marks, or certain structural heart issues.
2. Family history: A first-degree relative who independently meets the hEDS criteria.
3. Musculoskeletal complications: Chronic widespread pain, recurrent joint dislocations, or severe joint instability.

Your care team must also evaluate whether another condition better explains your symptoms ^[11][10]. Just because you have a history of hypermobility does not mean all current joint stiffness is due to hEDS. Inflammatory conditions, like rheumatoid arthritis, can cause new joint issues and must be diagnosed and treated separately ^[10]. However, hEDS can coexist with these other conditions.

Hypermobility Spectrum Disorder (HSD)

If your symptoms are caused by joint hypermobility but you do not meet the strict 2017 criteria for hEDS, you may be diagnosed with Hypermobility Spectrum Disorder (HSD) ^[11]. HSD is not a “milder” diagnosis; it can be similarly severe and disabling as hEDS ^[13]. The physical therapy, pain management, and joint protection strategies used to treat both conditions are largely the same ^[13][14].