Localised Pain in hEDS

Introduction

Localised joint and soft-tissue pain is one of the earliest and most disabling features of hypermobile Ehlers-Danlos syndrome (hEDS). While many people describe widespread aches, it is the recurrent, focal flares for example a shoulder that slips out at night, a knee that swells after a short walk, a jaw that ‘locks’ while eating, that most often drive clinic visits and impair day-to-day function. Observational cohorts confirm that repeated subluxations, tendonitis and bursitis account for a large proportion of pain episodes in hEDS.

Dr Stephanie Barrett combines rheumatology expertise with advanced neuromodulation (rTMS) to tackle both the mechanical and neuro-sensitisation components of localised pain, creating truly personalised care plans.

What is localised pain in hEDS?

In hEDS, stretchy collagen leaves ligaments too lax to hold joints firmly. Every step, reach or bite can cause:

Micro-instability & micro-tears – small but repeated trauma to tendons, bursae and joint capsules
Inflammation & nociceptive pain – tissue damage triggers cytokine release and swelling
Central sensitisation – over time, spinal and cortical pathways amplify normal signals so even light touch hurts.

These mechanisms often overlap, so a knee flare may begin with a minor patellar slip but persist because pain-processing circuits remain “turned up”.

Symptoms of localised pain in hEDS

Shoulder / AC joint – Sharp anterior or lateral pain, sense of “dead arm”, clicking on overhead reach. Aggravated by sleeping with arm overhead, weight-bearing through hands

Knee / Patella – Peri-patellar ache, giving-way, swelling after stairs or squats. Difficulty descending stairs, prolonged sitting with knees bent.

Ankle / Foot – Lateral ankle sprains, plantar fascia strain, mid-foot pain. Finding uneven ground, ballet-type positions, high heels difficult

Spine (cervical / lumbar) – Local spasm, headaches, radicular tingling. Aggravated by prolonged sitting, sudden twists

Temporomandibular joint (TMJ) – Jaw locking, earache, clicking, chewing fatigue. Made worse by chewy foods, mouth-opening at dentist.

Flares may last hours to weeks and frequently co-exist with fatigue, dysautonomia or mast-cell symptoms.

How to get a diagnosis

Dr Barrett follows a structured pathway:

Targeted history & pain diary – onset, positional triggers, swelling, nocturnal pain.
Physical examination – Beighton score, joint-line tenderness, crepitus, range-of-motion and strength testing.
Dynamic musculoskeletal ultrasound – visualises tendon subluxation, bursitis or effusion in real time.
MRI or CT arthrogram for complex joints (e.g. hip labrum, TMJ disc).
Sensitisation screening – Central Sensitization Inventory (CSI) and pain pressure threshold mapping when pain outlasts tissue healing.

Referral to imaging or nerve-conduction studies is reserved for red-flag features (progressive weakness, night pain, systemic signs).

Treatment for localised pain in hEDS

1 External Support

Compression sleeves, custom orthoses, kinesiology taping and semi-rigid braces off-load injured tissues; shoulder K-taping improved joint reposition sense in an hEDS shoulder-pain study in 2024. Frontiers

2 Medication & Injection Therapies

As a rheumatologist, Dr Barrett is very experienced in joint and soft tissue injections

An image of the pelvis is taken with MRI and if trochanteric bursitis is present, there is no need for guided injections and is injected safely and comfortably in the clinic. There is virtually no pain involved using this technique and it can get rid of 50-100% of leg/hip pain in hypermobile patients. Patients must also have a gait analysis and medialarch supportive footwear and possibly orthotics to create longevity for the injections.

3 Repetitive Transcranial Magnetic Stimulation (rTMS)

A 2025 meta-analysis and emerging dTMS case series demonstrate clinically meaningful relief in chronic regional musculoskeletal pain, likely through modulation of motor-cortical and limbic circuits. PMC ScienceDirect PMC

Dr Barrett delivers personalised M1 + dorsolateral prefrontal cortex protocols alongside physiotherapy to synergistically calm pain pathways and restore movement confidence.

4 Lifestyle & Adjunctive Measures

Optimising sleep hygiene, anti-inflammatory nutrition and stress-management reduces flare frequency. Where mast-cell or autonomic drivers are evident, hydration plans, antihistamines or beta-blockers are incorporated for holistic control.

Ready to reclaim pain-free movement?

Whether it’s a shoulder that slips, a knee that swells or a jaw that locks, targeted assessment and integrative therapy can break the flare–fear cycle. At her Harley Street and Chelsea clinics, Dr Stephanie Barrett blends state-of-the-art imaging, evidence-based rehabilitation and innovative rTMS to help people with hEDS return to the activities they love.

Book your Localised Pain consultation today and step towards stronger, steadier joints.