PIP for EDS & Hypermobility - Can You Claim? Guide 2026

Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) cause joint instability, chronic pain, fatigue, dislocations and co-existing conditions including POTS and gastroparesis. Claims are challenging because the condition is poorly understood by assessors, but the functional impact is often severe.

Which Activities Does EDS Affect?

Preparing Food (Activity 1) – Joint instability in hands causing you to drop things. Subluxations during kitchen tasks. POTS causing dizziness when standing.

Washing and Bathing (Activity 4) – Shoulder subluxations reaching to wash hair. Falls risk on slippery surfaces. POTS worsening in hot water.

Dressing (Activity 6) – Finger joint instability with buttons and zips. Shoulder dislocations putting arms through sleeves. Hip problems bending for socks.

Managing Therapy (Activity 3) – Needing help, prompting or supervision with pain, POTS or gastroparesis medication scores 1 point (descriptor 3b) however many drugs you take. Prescribed physiotherapy exercises done at home with another person's help count as therapy and are scored by the hours a week they take with that help (descriptors 3c to 3f). Specialist appointments do not count.

Moving Around (Activity 12) – Ankles and knees giving way. Falls from proprioception problems. POTS causing dizziness and near-fainting when upright.

POTS and PIP

POTS is separately disabling: dizziness on standing, palpitations, near-fainting, inability to stand for any length of time. Directly affects cooking, washing, mobility and journeys.

What Evidence Helps?

• Rheumatologist or geneticist letter
• Beighton score
• Physiotherapist reports
• Cardiologist letters if POTS
• Photos of subluxations
• List of braces and aids

POTS and EDS

Postural Orthostatic Tachycardia Syndrome co-exists with EDS in a huge proportion of patients. POTS causes your heart rate to spike when standing, leading to dizziness, palpitations, near-fainting and inability to stand for any length of time. This directly affects cooking (Activity 1 - can't stand at worktop), washing (Activity 4 - dangerous in shower) and mobility (Activity 12 - walking triggers symptoms). List POTS as a SEPARATE condition on your form so its effects on each activity are counted.

Gastroparesis and EDS

Many EDS patients develop gastroparesis (delayed stomach emptying), causing nausea, vomiting and malnutrition. This affects eating (Activity 2) and food preparation (Activity 1 - cooking when nauseous). If you have gastroparesis, claim for it separately.

The Assessment Problem

EDS assessments are notoriously problematic. Assessors often write "full range of movement" as if hypermobility is a GOOD thing. It isn't - it's the entire problem. Your joints move TOO MUCH, causing pain, instability and subluxations. If the assessor notes "good range of movement," challenge this at Mandatory Reconsideration: "The assessor recorded full range of movement. This is consistent with my diagnosis of EDS/hypermobility - excessive range of movement IS my condition. It causes joint instability, subluxations and chronic pain."

Daily Subluxations and PIP

If your joints sublux (partially dislocate) during daily activities, describe each incident type: "My shoulder subluxes when I reach above my head (washing hair, getting plates from cupboards). My fingers sublux when I grip objects (holding pans, using cutlery). My kneecap subluxes when I walk on uneven ground. These subluxations cause sudden severe pain and temporary loss of function in the affected joint."

EDS Subtypes - Specify Which You Have

• Hypermobile EDS (hEDS): Most common. No genetic test yet. Diagnosed clinically. Often includes POTS, MCAS, GI issues.
• Classical EDS (cEDS): Skin hyperextensibility, atrophic scarring, joint hypermobility. Caused by COL5A1/A2 mutations.
• Vascular EDS (vEDS): Life-threatening - blood vessels and organs can rupture. COL3A1 mutation. The SR1 special rules fast-track applies only if a medical professional has said you might have 12 months or less to live.
• Kyphoscoliotic EDS: Severe scoliosis from birth.
• Arthrochalasia EDS: Severe congenital hip dislocation.
• Dermatosparaxis EDS: Severe skin fragility.
• Brittle cornea syndrome: Eye fragility.
• Hypermobility Spectrum Disorder (HSD): Significant symptoms but does not meet 2017 EDS criteria. Same functional impact, same PIP eligibility.

Beighton Score and Other Diagnostic Tools

The Beighton Score (out of 9) measures joint hypermobility:

• 0-3: Normal range for adults (higher cutoff for children)
• 4-6: Generalised joint hypermobility
• 7-9: Severe generalised joint hypermobility

However, Beighton scores naturally decrease with age - a low current score does not exclude EDS if you were hypermobile when younger. The 5-Part Questionnaire (5PQ) assesses historical hypermobility. Ask for both if your current Beighton is low.

The Co-Morbidity Cluster

EDS rarely exists alone. Common comorbidities:

• POTS (Postural Orthostatic Tachycardia Syndrome): Heart rate increase >30 BPM on standing. Affects 30-50% of hEDS patients.
• MCAS (Mast Cell Activation Syndrome): Allergic-type symptoms, GI issues, flushing.
• Gastroparesis and GI dysmotility: See dedicated guide.
• Tethered cord syndrome: Spinal cord tethering causing neurological symptoms.
• Craniocervical instability (CCI): Severe complication. Major surgery sometimes required.
• Chiari malformation: Brain herniation through skull base.
• Anxiety and depression: Significantly higher rates than population.
• Chronic fatigue: Often disabling.
• Migraine: Significantly increased rates.
• Dysautonomia: Beyond POTS, broader autonomic dysfunction.
• TMJ dysfunction: Jaw joint problems.
• Bladder issues: Frequency, urgency, prolapse.

List ALL these conditions on your form. The combined impact is what scores.

Subluxation Pattern - Document Specifically

If you experience subluxations or dislocations:

• Which joints (shoulder, hip, knee, fingers, jaw, ribs)
• How often (daily, weekly, with specific activities)
• What you do when it happens (manual relocation, A&E, self-reduction)
• Duration of post-subluxation pain (hours to days)
• Use of braces, tape or supports
• Activities you have stopped doing

Photos of dislocations (where safe to take) are powerful evidence. Some claimants maintain a dislocation diary.

POTS Detailed Impact

POTS is diagnosed by:

• Heart rate increase >30 BPM (or to >120 BPM) within 10 minutes of standing
• Tilt table test or active stand test

Treatment includes increased salt and fluid intake, compression stockings, midodrine, fludrocortisone, ivabradine, beta-blockers. POTS prevents standing for any length of time - directly impacts Activities 1, 4, 12.

Frequently Asked Questions

I was told it's "just hypermobility" - can I still claim?

Yes. Whether you have a formal EDS diagnosis or hypermobility spectrum disorder (HSD), PIP is based on functional impact, not diagnosis. If your joints cause pain, instability and daily difficulties, you can claim.

Should I show the assessor how flexible I am?

No. Demonstrating hypermobility at assessment is counterproductive. The assessor may interpret it as "good mobility" rather than understanding that excessive flexibility IS the pathology. Explain verbally what your joints do and why that's a problem.

I am awaiting EDS diagnosis - can I claim?

Yes. Diagnostic waits are long (12-36 months in many NHS regions). Submit current functional impact evidence. GP, physiotherapist and rheumatologist letters confirming hypermobility and impact can support a claim while you wait.

I have hypermobile EDS but no genetic test - is that ok?

Yes. There is currently no genetic test for hEDS. Diagnosis is clinical, based on 2017 criteria. Your specialist letter confirming hEDS diagnosis is sufficient evidence.

Will my children also have EDS?

EDS is genetic - children of hEDS parents have 50% chance of inheriting. This is not directly PIP-relevant but worth knowing. Children with EDS symptoms may qualify for DLA.

I am on multiple medications - what should I include?

List everything: pain medications (gabapentin, amitriptyline, opioids), POTS medications (midodrine, ivabradine, fludrocortisone), GI medications (prokinetics, anti-emetics), allergy medications (antihistamines, mast cell stabilisers). Needing help, prompting or supervision with medication scores 1 point under Activity 3 (descriptor 3b) however many drugs you take, so the list matters mainly as evidence of how severe each condition is.

Does Cocoyne / Hesperos / Brachy etc affect my claim?

Diagnostic labels matter less than function. List your specific diagnosis and detailed impact. The DWP cannot dismiss functional impact regardless of which EDS subtype or related disorder you have.