PIP for Complex Regional Pain Syndrome (CRPS) - How to Claim

Complex Regional Pain Syndrome (CRPS) causes burning pain, swelling, sensitivity to touch and movement difficulties that are often completely disproportionate to the original injury. A minor fracture or sprain develops into a condition where the affected limb becomes unusable. CRPS is poorly understood by many assessors, which means your PIP form and evidence need to be exceptionally clear.

Why CRPS Is Difficult for PIP

Assessors may look at you and see no visible disability. Your X-rays are normal. Your blood tests are normal. Yet the pain is so severe that even air moving across your skin causes agony. This invisibility means you must be extremely detailed in describing your symptoms and their impact on daily activities.

Which Activities Does CRPS Affect?

If CRPS is in your hand/arm:

Preparing Food (Activity 1) - Cannot grip knives, pans or utensils with the affected hand. Even the vibration from chopping sends pain through the arm. Cannot tolerate water on the affected area for washing up. Light touch triggers severe pain, making any manual task impossible.

Washing and Bathing (Activity 4) - Water temperature changes cause excruciating pain. Cannot wash hair with one hand. Drying off with a towel is agonising on the affected limb. Need help washing the unaffected side because the affected hand can't hold a sponge.

Dressing (Activity 6) - Fabric touching the affected area causes pain. Buttons and zips impossible with one working hand. Cannot tolerate sleeves, watches or jewellery on the affected arm.

If CRPS is in your foot/leg:

Moving Around (Activity 12) - Walking causes severe pain with every step. Weight-bearing on the affected foot may be impossible. Even the pressure of a bedsheet on the foot causes pain. Walking distance severely limited - often under 20 metres.

Washing and Bathing (Activity 4) - Standing in the shower on the affected foot. Getting in and out of the bath. Water on the affected area.

For all CRPS:

Managing Therapy (Activity 3) - CRPS requires intensive, ongoing treatment: strong pain medication (often opioids, gabapentin, ketamine), physiotherapy, desensitisation exercises, pain clinic appointments, psychological support, nerve blocks, spinal cord stimulator management if fitted. For PIP, only help at home counts. Needing someone to prompt or help with medication is descriptor 3b (1 point) however many drugs you take. Descriptors 3c to 3f (2 to 8 points) score the hours each week another person spends helping with therapy done at home, such as physiotherapy or desensitisation exercises. Clinic appointments and procedures do not count.

Engaging with People (Activity 9) - Chronic severe pain causes depression, anxiety, irritability and complete social withdrawal. Many people with CRPS become housebound.

What Evidence Helps?

• Pain consultant letters with Budapest criteria diagnosis
• Photographs showing colour changes, swelling, skin changes
• Physiotherapist reports
• Psychology or psychiatry letters about mental health impact
• Medication list (the complexity itself demonstrates severity)
• Partner or carer statement

The Budapest Criteria - Why It Matters for PIP

The Budapest Criteria are the international diagnostic standard for CRPS. Diagnosis requires:

1. Continuing pain disproportionate to any inciting event
2. At least one symptom in three of four categories: sensory (hyperalgesia, allodynia); vasomotor (temperature asymmetry, skin colour changes); sudomotor/oedema (sweating changes, swelling); motor/trophic (decreased range, weakness, tremor, nail/hair changes)
3. At least one sign at evaluation in two or more of those categories
4. No other diagnosis better explains the signs and symptoms

If your pain consultant has formally diagnosed CRPS using Budapest criteria, ask for a letter confirming this. It is the gold-standard evidence for PIP.

CRPS Type 1 vs Type 2

• CRPS Type 1 (formerly RSD): No identifiable nerve injury. Most common form. Often follows fractures, soft tissue injuries, immobilisation.
• CRPS Type 2 (formerly causalgia): Identifiable nerve injury. Often follows surgery or major trauma. Tends to be more severe.

Both qualify for PIP based on functional impact. Specify which type you have if known.

Treatment Stages and Activity 3 Burden

CRPS treatment is intensive and ongoing. Typical regimen includes:

• Multiple medications - pregabalin/gabapentin, amitriptyline, tramadol, opioids, sometimes ketamine
• Topical treatments - lidocaine patches, capsaicin cream
• Physiotherapy 1-3x weekly - desensitisation, gentle movement, hydrotherapy
• Occupational therapy for adaptations
• Pain clinic monthly to 3-monthly
• Psychology - pain management programmes, CBT for chronic pain
• Mirror therapy - daily home practice 15-30 minutes
• Graded motor imagery exercises
• Possible interventions - nerve blocks, sympathectomy, spinal cord stimulator

Only the hours another person spends each week helping you with therapy done at home count towards descriptors 3c to 3f: no more than 3.5 hours scores 2 points, over 3.5 up to 7 hours 4 points, over 7 up to 14 hours 6 points and over 14 hours 8 points. Medication is descriptor 3b (1 point) at most, and clinic visits, nerve blocks and spinal cord stimulator programming appointments do not count.

Spinal Cord Stimulator and PIP

Around 5-10% of CRPS patients have an implanted spinal cord stimulator (SCS) for pain control. This:

• Indicates severe treatment-resistant pain
• Requires ongoing programming visits
• Has restrictions on MRI scans, diathermy
• Battery replacement surgery every 5-15 years
• Often partially effective but rarely a cure

If you have an SCS, include the implant letter and ongoing pain clinic letters. Even with SCS, most CRPS patients continue to qualify for high rates of PIP.

The Reliability Criteria in CRPS

Under PIP Regs 2013 reg 4(2A), activities must be performed safely, to an acceptable standard, repeatedly and within reasonable time. For CRPS:

• Not safely: Pain may cause sudden withdrawal of affected limb - dropping hot pans, falling, dropping objects. Risk of falls from leg/foot CRPS.
• Not acceptable standard: Tasks done with affected limb are poorly done or incomplete.
• Not repeatedly: One activity may exhaust pain reserves for the day. Cannot repeat tasks.
• Not reasonable time: Simple tasks take 3-4x longer due to pain pauses, careful movement, recovery breaks.

Coping with the Invisibility Problem

CRPS is invisible at rest. To make impact visible to the assessor:

• Photograph colour changes, swelling, sweating asymmetry on bad days. Include in evidence.
• Bring a thermometer reading showing temperature difference between limbs (typical CRPS shows 1-3°C difference).
• Mention specific protective measures - keeping a limb wrapped, using a sling, avoiding all sleeves.
• Document any visible signs the assessor will see during assessment - guarding posture, avoiding limb use, asymmetric appearance.

Frequently Asked Questions

My CRPS only affects one hand - can I still claim?

Yes. CRPS in a single limb often severely affects multiple PIP activities: cooking, washing, dressing, communication if dominant hand. If the affected limb is your dominant hand, the impact is even greater. Many single-limb CRPS patients qualify for enhanced daily living.

I had CRPS that "spread" to other limbs - is this real?

Yes. CRPS spread to additional limbs is well-recognised in around 10-15% of cases. Multiple-limb CRPS is much more disabling and almost always qualifies for highest rates. Document the spread with consultant letters.

My pain consultant says it could resolve - will the DWP refuse me?

Treatment may improve symptoms but CRPS often persists for years or decades. PIP looks at current function and whether it is likely to last: you need to have met the descriptors for the past 3 months and be likely to meet them for the next 9 months. Possible improvement beyond that is not a reason to refuse.

I am on high-dose opioids - does that count against me?

No - it demonstrates severity. Strong opioids (morphine, oxycodone, methadone) for chronic pain are only used when other treatments have failed. Document your medication list with doses; this is strong evidence.

I am awaiting an SCS trial - should I claim now?

Yes. SCS trials and implants are for severe treatment-resistant CRPS. Being on the waiting list is evidence of severity. Claim now based on current function; your claim may be reviewed later if SCS produces significant improvement.

What if my CRPS started after a workplace injury - does that affect my PIP claim?

No. PIP is not work-related compensation. You can also pursue personal injury or workers' compensation separately. PIP looks at functional impact regardless of cause.

Will my PIP affect my pain medication prescription?

No connection. PIP is a benefit, not a prescribing decision. Your doctor prescribes based on clinical need. PIP money may help with the cost of treatments not available on NHS (private physiotherapy, complementary therapies).