Updated by Dr. Daens, January 2026.
In the context of Ehlers-Danlos syndrome (EDS), patients are often already being monitored by a rheumatologist-internist, with a medical report that is very useful for confirming the diagnosis and organizing follow-up care.
However, when it comes to physical therapy (and particularly requests for extensions/serious conditions), a functional assessment carried out by a physical therapist and/or a physical medicine and rehabilitation (PMR) doctor and a report from a posturologist are often a real bonus.
✅ The rheumatologist's report: this is essential, but does not always focus on "function."
The rheumatologist (often an internist in Belgium) plays a very important role in:
• make or confirm the diagnosis,
• eliminate other causes,
• coordinate certain examinations, prescribe compression garments and orthotics,
• Manage pain and medical complications, including managing SED comorbidities (dysautonomia, mast cell activation—MCDs/MCAD/MCAS—, digestive disorders, dyssensoriality, proprioception disorders – both external and internal – sleep disorders, internal medicine-style blood tests, etc.).
However, consultations are generally more focused on the illness and its medical criteria, and less on a detailed assessment of:
• walking,
• endurance,
• everyday abilities,
• muscle limitations,
• compensation strategies,
• the concrete functional impact.
This is not a flaw: it is simply not the focus of rheumatology/internal medicine assessments.
✅ Functional assessment: what helps to "translate" SED into concrete difficulties.
In SED, the problem is not just "having hypermobility," but above all what this entails on a daily basis:
• Joint instability (subluxations, dislocations)
• mechanical pain
• fatigue and exercise intolerance
• difficulty standing, walking, carrying, writing, driving, etc.
• muscle deconditioning
• Progressive loss of independence if the body is not stabilized, with frequent isolation from family, social, and societal life.
The functional assessment allows us to measure and objectify this.
✅ Why is a physical therapist valuable in this assessment?
The physical therapist can assess the following:
• motor control and proprioception
• active stability (core, hips, shoulders, knees, etc.)
• endurance and fatigue
• compensations (overuse of certain muscles, posture, walking patterns)
• tolerance to exertion and potential for improvement
• realistic rehabilitation goals
It is a very practical assessment, focused on "what the body can do."
✅ Why does an MPR doctor bring something else to the table?
Physician specializing in physical medicine and rehabilitation (PMR) is specifically trained to:
• analyze the overall functional impact (daily life, work, school)
• coordinate a rehabilitation strategy
• Integrate needs for physical therapy, occupational therapy, exercise reconditioning, technical aids, orthotics, etc.
• offer a realistic and secure program (progressive, adapted to SED)
• Support requests for coverage by focusing on function rather than diagnosis alone.
👉 They are often the most "suitable" specialist when you need to justify long-term, structured care.
✅ An important point: this is not "against" the rheumatologist.
The goal is not to replace the rheumatologist, but to complement their work.
It can be summarized as follows:
• Rheumatologist/internist: diagnosis, complications, general medical follow-up, various prescriptions
• Physical therapist: motor assessment + specific goals + progress
• Physical medicine and rehabilitation physician: overall "functional" perspective, coordination of rehabilitation and daily needs
✅ In practice: why it is useful for your file and your care
A file that contains a clear functional assessment often helps to:
• better target physical therapy (and avoid aggravating exercises)
• Set goals appropriate for SED (stability, motor control, injury prevention)
• document limitations objectively
• facilitate procedures with mutual insurance companies if an extension is necessary
• improve continuity of care over the long term
✅ And the SED specialized posturology assessment: why can it be useful?
When the assessment is carried out by a posturologist who is trained and truly specialized in SED, it can provide interesting additional information, particularly regarding:
1) Postural compensation strategies
In the SED, the body constantly compensates to "hold on" despite instability.
A specialized assessment can help identify:
• asymmetric supports,
• pelvic misalignment,
• excessive strain on the neck/back,
• certain postural adjustments that are "invisible" in everyday life but very tiring.
2) The link between posture, pain, and fatigue
In some patients, pain does not originate from a single joint, but rather from a series of compensations:
A postural assessment can sometimes help to understand why:
• certain pains always recur in the same place,
• Fatigue increases when standing.
• feelings of "unsteadiness" persist despite physical therapy.
3) Adaptation aids (insoles, supports, stabilization strategies)
In some cases, a specialized assessment may support:
• consideration of suitable insoles/orthotics,
• correcting your stance if this actually improves stability,
• and above all, greater comfort when walking and standing.
📌 Important: in SED, the goal is not to achieve "perfect posture," but to find a more stable posture that requires less energy and is better tolerated.
4) A useful supplementary document for understanding the patient's profile
A posturology assessment does not replace a physical therapy/MPR assessment, but it can:
• add to the file,
• guide certain areas of rehabilitation,
• and be useful when symptoms are dominated by imbalance, instability, headaches/neck pain, postural fatigue, or diffuse pain.
⸻
✅ In summary
For a solid case and effective care in SED:
• Rheumatologist/internist: diagnosis and medical follow-up
• Physical therapist: motor assessment + rehabilitation goals
• Physical medicine and rehabilitation physician: comprehensive rehabilitation strategy and functional justification
• Specialized SED posturologist (if relevant): detailed analysis of compensations, support, and postural fatigue
The goal is to develop consistent, personalized, and sustainable care.
Dr. Stéphane Daens
Internal Medicine – Rheumatology