How Do I Get an hEDS or HSD Evaluation From a Doctor?

If your concerns about joint pain or instability have been dismissed as just being “double-jointed” or having normal flexibility, it can be deeply frustrating. One helpful advocacy tool is to shift the conversation away from just your flexibility and toward your functional limitations and injury history.

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) are legitimate clinical diagnoses based on specific frameworks, not just how far your joints bend ^[1][2]. hEDS is diagnosed using the strict 2017 international criteria, while HSD is the diagnosis for symptomatic joint hypermobility that causes issues but does not meet the criteria for hEDS or another condition ^[3][4]. Both can cause substantial disability and deserve appropriate management ^[4].

Prepare a Structured Symptom History

Doctors often have limited time, and it can be hard to remember everything during a short appointment. Bringing a concise, organized summary of your medical history helps them see the pattern of your symptoms. Consider documenting the following:

• A timeline of injuries: List recurrent sprains, subluxations (partial dislocations where the joint slips out and back in), or full dislocations ^[5][6]. Note any emergency visits, physical therapy, or imaging reports.
• Functional limitations: Clearly explain what activities you have had to modify or stop. For example, note if joint instability prevents you from walking certain distances, working, sleeping, or performing self-care ^[5].
• Associated non-joint symptoms: Some people with hEDS or HSD report other issues, such as chronic fatigue, dizziness upon standing (orthostatic intolerance), gastrointestinal problems, or pelvic symptoms ^[2][7]. While these are not part of the diagnostic criteria for hypermobility and must be evaluated on their own merits, they provide important context about your overall health ^[8].
• Family history: Mention any blood relatives diagnosed with a connective tissue disorder or severe hypermobility ^[2].
• Red flags: Be sure to promptly report a family history of early-onset aneurysms, unexpected organ ruptures, marked skin fragility, or sudden unexplained deaths. These are not typical of hEDS or HSD, but are critical warning signs that may point to other serious inherited conditions, like vascular EDS, which require urgent cardiovascular or genetic assessment ^[9][10].

Why Normal Test Results Do Not Tell the Whole Story

It is very common for patients with hEDS or HSD to have completely normal X-rays or MRIs, even when experiencing severe pain or recurrent subluxations ^[11]. Standard imaging does not directly measure the generalized looseness of connective tissue, and static scans may miss dynamic or position-dependent instability ^[11][12]. While a normal scan does not establish or exclude hEDS or HSD, imaging is still important to investigate specific joints or alternative causes of pain ^[1].

Furthermore, your doctor might assess your flexibility using the Beighton score—a 9-point system testing the fingers, elbows, knees, and spine ^[13]. A low score does not automatically exclude a hypermobility disorder ^[13]. The 2017 hEDS criteria use age-specific thresholds, and if you are older or have acquired stiffness, doctors can use a 5-part questionnaire to assess your historical hypermobility ^[2]. Additionally, the Beighton score does not test joints like the shoulders, hips, ankles, or jaw ^[14]. Symptomatic hypermobility in just one or a few specific joints that causes pain or instability is known as localized HSD ^[13].

Asking for a Clinical Assessment or Referral

There is currently no confirmatory genetic test or blood test for hEDS or HSD ^[1]. Diagnosis is primarily clinical, meaning it relies on your medical history, a physical exam, and ruling out other possibilities ^[1][2].

If your primary care doctor is not comfortable performing this evaluation, you can ask for a referral. You might say: “I understand my imaging is normal, but my joint instability is still interfering with my life. Can we evaluate this using the 2017 hEDS diagnostic framework and HSD criteria, or can we find a clinician experienced in hypermobility who can?”

Referral pathways vary widely depending on where you live. Diagnoses are often made by primary care doctors, rheumatologists, physical medicine and rehabilitation (PM&R) doctors, or sports medicine physicians ^[10][2]. A referral to a geneticist is particularly important if your exam or family history raises suspicion for a different heritable connective tissue disorder ^[10].

Finally, remember that the clinician should consider and investigate alternative or coexisting explanations for your symptoms ^[3]. Conditions like inflammatory joint diseases, neuromuscular issues, or other structural problems can coexist with hypermobility. Any new or worsening symptoms should be evaluated carefully rather than simply blamed on being “double-jointed” ^[2][15].