Title: Diagnosis and management of Complex Regional Pain Syndrome and the
nurses' role.
Authors: Sharon Grieve1 BSc(Hons) RGN, Candida S McCabe1,2 PhD RGN
Affiliations: 1The Royal National Hospital for Rheumatic Diseases, Bath, 2The
Faculty of Health and Life Sciences, University of the West of England.
Current Appointment:
Sharon Grieve
Clinical Research Nurse
Bath Centre for Pain Services,
Royal National Hospital for Rheumatic Diseases
Upper Borough Walls, Bath BA1 1RL
Professor Candy McCabe
Professor of Nursing and Pain Sciences, University of the West of England, Bristol
NIHR Career Development Fellow
Consultant Nurse, Bath Centre for Pain Services, Royal National Hospital for
Rheumatic Diseases
Upper Borough Walls, Bath BA1 1RL
Correspondence to:
Sharon Grieve
Clinical Research Nurse
Bath Centre for Pain Services,
Royal National Hospital for Rheumatic Diseases
Upper Borough Walls, Bath BA1 1RL
Proofs to: candy.mccabe@uwe.ac.uk
Sources of funding: None
Declaration of Interest: None
Acknowledgements: C McCabe is funded by an NIHR Career Development
Fellowship
Diagnosis and management of Complex Regional Pain Syndrome
and the nurses' role.
Abstract
Complex Regional Pain Syndrome (CRPS) is a little known condition which may be
rarely encountered by the nursing profession. This may lead to a delay in diagnosis
and the initiation of important rehabilitation strategies. This article aims to raise
awareness of this condition, providing information on how to diagnose and manage
CRPS. It will be demonstrated how nurses can play a role in identifying the condition
promptly and initiating referral to specialist services.
Introduction
Figure 1 - Acute CRPS
Complex Regional Pain Syndrome (CRPS) is a painful and debilitating condition
affecting a limb, predominantly as a consequence of injury such as a fracture, soft
tissue injury or surgery. The individual with CRPS experiences intense pain in the
affected limb and this may lead to a loss of function, which may substantially affect
their quality of life (Galer et al. 2000). After the precipitating injury the individual
experiences pain disproportionate to the injury itself. For example, post fracture
patients may report persistent pain that extends well beyond the fracture site weeks
after the bone has healed and plaster cast removed. Commonly, they will have
previously complained that their plaster feels too tight and persist in this sensation
despite re-application and no clinical evidence of this.
The area affected by CRPS becomes painful to even the slightest stimulus, which
would normally not evoke a painful response (allodynia). In addition, the affected
area is characterized by sensory, motor, autonomic and trophic changes which can
include alterations in temperature, increased sweating, swelling, skin changes and
muscle spasms. This alone can be deeply disturbing but in addition there can be an
altered sense of body perception and a feeling of being disengaged from the limb
resulting in neglect and disuse (Lewis et al. 2007).
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This article will introduce CRPS to those nurses unfamiliar with the condition. This
will be particularly relevant to those based in orthopaedic trauma units or fracture
clinics where individuals may report symptoms of CRPS very soon after an injury.
The features of CRPS will be described which will enable the nurse to consider the
diagnosis of CRPS at an early stage, therefore facilitating prompt referral to
specialist services. Rehabilitation strategies will be discussed, addressing both
pharmacological and non-pharmacological interventions. The role of the nurse will be
described and key take home messages identified.
Classification and diagnosis
Historically, a number of different terms have been used to describe CRPS including
causalgia, algodystrophy, reflex sympathetic dystrophy and Sudek's atrophy. Today
Complex Regional Pain Syndrome is the most widely recognised and accepted term
(Stanton-Hicks et al. 2002). CRPS has two classifications; Type 2 where known
major nerve damage has occurred and Type 1 when this is absent. Type 1 is more
commonly occurring (de Mos et al. 2007).
There is no definitive diagnostic test and therefore CRPS is diagnosed from a clinical
examination using the Budapest Diagnostic Criteria (Harden et al. 2010) (Table 1) To
meet a diagnosis of CRPS the individual must have at least one sign in two or more
categories and at least one symptom in three or more categories. There should also
be continuing pain disproportionate to any inciting event. It is important that
consideration is given to differential diagnoses including fracture, soft tissue injury,
arthritis, Raynaud's disease and arterial problems.
Category
Sign / Symptom
Allodynia (pain to light touch and/or
temperature sensation and/or deep
Sensory
somatic pressure and /or joint
movement)
And/or
Hyperalgesia (to pin prick)
Temperature asymmetry
2
And /or
Vasomotor
Skin colour changes
And/or
Skin colour asymmetry
Oedema
And/or
Sudomotor/ oedema
Sweating changes
And/or
Sweating asymmetry
Decreased range of movement
And/or
Motor dysfunction (weakness, tremor,
Motor/ trophic
dystonia)
And/or
Trophic changes (hair/ nail/skin)
Table 1 Budapest diagnostic criteria. Adapted from CRPS in adults: concise guidance (Turner-Stokes
& Goebel 2011)
Aetiology and incidence
The cause of CRPS is unknown however there are a number of precipitating factors
including trauma and surgery (Harden et al. 2010). It is important to remember that
not everyone experiencing such an injury develops CRPS and the extent of trauma
does not relate to the development of CRPS. The precipitating injury can be minor
and may have been an insignificant event to the individual. In addition, there are a
number of patients (<10%) who experience a spontaneous onset, with no
precipitating event (de Mos et al. 2007)
The incidence has been identified as 26 per 100,000 person years with females
more likely to be affected (ratio 3.4:1) (de Mos et al. 2007). In real terms this
translates to around 16,000 patients per year in the United Kingdom with the peak
age of onset being 50-70 years (de Mos et al. 2007).
For the majority of people (approximately 80-85%) the symptoms of CRPS can
resolve quickly (Sandroni et al. 2003) but for others, the condition will persist long
term with physical, emotional and social consequences. It has been established that
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approximately 15% of patients with CRPS will go on to develop long term disability
and handicap (Field et al. 1992; Geertzen et al. 1998), a finding which has far
reaching implications for rehabilitation and healthcare costs.
Clinical presentation
CRPS shares similar features with a number of other conditions and therefore
individuals may initially present to a wide range of specialities including
orthopaedics, psychology, neurology, pain medicine, physiotherapy and
rheumatology. Health care professionals may be unfamiliar with CRPS and it can
take many months of searching to finally get a diagnosis (de Mos et al. 2007; Lewis
et al. 2007) This is confounded by a clinical presentation which may be suggestive of
many differential diagnoses (Goebel 2011) and can vary for each individual.
If familiar with the condition, it can be easy to identify a patient with CRPS. They
commonly position themselves away from others to ensure the casual passer-by
cannot accidentally knock their painful limb, and are hypervigilant of the space
around that limb. The limb is often unclothed as even the touch of the lightest
clothing can manifest in pain (allodynia) and the nurse may notice swelling and poor
function. And yet, despite being so vigilant of the limb, the individual’s attention will
often be focused away from the limb - as if it isn't there.
The experience of acute CRPS can be bewildering for the individual owing to the
disparate range of symptoms that manifest in the affected limb (pain, colour,
temperature fluctuations and changes in hair and nail growth (Harden et al 2010))
which, instead of going away over time, appear to slowly advance up their affected
limb. Those with chronic CRPS may have seen multiple healthcare professionals in
the past (de Mos 2007, Lewis et al 2007) and be anxious that any new assessments
may simply cover previous ground and offer no new therapeutic strategies, or
perhaps be fearful of their symptoms being disbelieved. What will be common to all
however, is their strong hope that the nurse will not touch their allodynic limb.
Assessing a patient with CRPS is a clinical challenge. It is likely their anxiety levels
will be high, and they will prefer that they and the nurse engage as little as possible
with their affected limb. In order to establish a full picture of both the physical and
psychosocial impact of their condition (Harden et al 2006; Bruehl & Chung 2006) it is
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of paramount importance that the nurse gains the trust of the patient so they feel
comfortable and confident enough to fully disclose all relevant information.
The presenting features will be described below according to classification in the
Budapest criteria.
Sensory
Early presentation of CRPS can demonstrate a number of diverse characteristics.
The overriding feature, however, is one of intense pain. Using the limb is extremely
painful and for this reason the limb is often resting at the patient’s side, frequently
immobile and unused. Textures against the skin may be unbearable and therefore
bedclothes or clothing become intolerable. Even a gentle breeze against the limb
can exacerbate pain.
Motor
Initially the intense pain can affect limb mobility, as there is a tendency to protect the
limb by reducing range of movement. The pressure of body weight through a CRPS
affected leg can be agonising and negatively impact upon the walking pattern.
Walking aids can be used to improve function and reduce pain. Other motor
disturbances such as weakness, tremor and muscle spasm may be present . The
limb may shake when the patient attempts to initiate a movement. There may be a
slowness with which they engage with their limb and the sense of ‘disconnect’ from a
limb when they do try to move it. Sustained muscle contractions (dystonia) can be
present and occur in around 25% of patients with CRPS (Munts et al. 2011)
manifesting as fixed flexion of the fingers, wrist or elbow in the upper limb. In the
lower limb, dystonic patterns may include fixed plantar flexion of the toes, internal
rotation of the ankle or knee flexion. When dystonia is present, functional
rehabilitation can be particularly challenging and consequently may indicate a poor
outcome (van Rijn et al. 2007)
Autonomic and trophic signs
The affected area of the limb is usually oedematous, hot or cold to touch, the skin
shiny and there may be changes in hair or nail growth. For example, there may be
thick, dark hair over the painful area or reduced hair growth. The nails on the
affected limb may grow excessively quickly or have reduced growth and ridging. The
temperature discrepancy between the affected and unaffected limbs can be
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noticeable, with the affected limb being cooler or warmer to touch. The individual
however may describe a burning hot limb and conversely it may feel cool to the
assessor
Other features;
Psychological Factors
Patients with CRPS often report high levels of anxiety and depression and the
assumption is sometimes made that there is a particular personality type or
character that predisposes to this condition. Recent large scale studies looking at
patients with CRPS after trauma have found no evidence of this (de Mos et al. 2008;
Beerthuizenl et al. 2011). However, living with a chronic pain condition will clearly
manifest as anxiety and depression in some individuals. The nurse can play an
important role in reassuring the patient and acknowledging the symptoms of this
confusing condition.
Body perception Disturbance
It is now well recognised that in addition to the published diagnostic criteria there are
other distressing symptoms of CRPS including a perceived lack of ownership of the
affected limb, or ‘neglect’, and altered body perceptions related to that limb (Galer et
al. 1995; Galer & Jensen 1999; Moseley 2005; Lewis et al. 2007) These sensory
changes are commonly accompanied by strong emotional responses towards the
limb that may include an overwhelming desire for amputation of the limb and a sense
of disgust and/or hatred of that limb (Lewis et al. 2007). Clinically is can be observed
that the patient may avert their gaze from the limb, maybe hide it from their view
such as put an affected arm behind their back or hang their affected leg off the bed
and position their body away from that limb. Patients frequently express a lack of
awareness regarding the position of the limb and commonly describe the size of the
limb as larger than its actual appearance (Lewis et al. 2007). Patients may feel
embarrassed by such thoughts and sensations and be reluctant to spontaneously
express them to others for fear of provoking a negative reaction. Once more, the
nurse can play an important role in reassuring the individual that these feelings and
sensations manifest as a result of the CRPS and are not representative of a poor
psychological state.
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Acute and chronic presentation of CRPS
The following are clinical scenarios based on a composite picture of cases we have
seen.
Case study 1 - Acute presentation of CRPS
Claire, aged 23 presents with acute CRPS of the left upper limb, three months after
slipping and bruising her hand. There is clearly an aggressive inflammatory process
as the limb is hot and swollen. Movement is restricted because of the swelling and
intense pain and as a consequence Claire is reluctant to use the arm, positioning it
tightly against her chest. On examination, there is allodynia of the hand and forearm.
There is obvious colour and temperature discrepancy; the left being warmer and
reddish in colour. Claire reports that her nails on the left hand grow quicker and the
forearm has thicker and darker hair growth. Claire does not like to look at her left arm
and is very reluctant for any contact to be made during examination
Case Study 2 - Chronic presentation of CRPS
Gloria, aged 55, has a six year history of CRPS precipitating after a dog bite on her
right foot. There is evidence of chronic disease; the ‘anger’ has gone out of the limb
but disability has increased due to lack of use and Gloria relies heavily on using
crutches. Hair and nail growth changes are less apparent and her limb feels cool to
touch. Gloria describes her limb as burning inside but feeling icy cold to touch.
Gloria's mood is affected and her lifestyle changed significantly as she is reluctant to
socialise and no longer works. She wishes someone would cut off her foot and
enable her to get on with her life.
Mechanisms
The cause of CRPS is not clearly understood but there is evidence that it is a multisystem syndrome with involvement at the peripheral and central level. A recent
review has proposed that the clinical presentation of CRPS relates to four
pathophysiological mechanisms; inflammatory change, nociceptive sensitisation,
7
vasomotor dysfunction and neuroplastic change in the cortex of the brain (Marinus et
al. 2011). The schematic diagram below illustrates these proposed mechanisms;
Figure 2 - Clinical features and proposed pathophysiological mechanisms of CRPS
Management of CRPS
The recently published guidelines for diagnosis, referral and management of CRPS
in adults describe the four pillars of care on which treatment should be based and
are summarised below; (Goebel et al. 2012).
1. Patient Information and education
Patient education and information is an important part of the management of CRPS
and the nurse should support the patient towards self management of the condition.
Simple advice can be given to the patient, while waiting for further assessment, such
as advising the patient to direct attention to the limb, frequently touching it, looking at
it and using it gently (Goebel 2011). The patient should be involved in goal setting
and review.
2. Pain relief
Pharmacological intervention has limited use in CRPS and should be used with
caution. There are no drugs specifically licensed for use in CRPS in the UK. Before
prescribing medication, a full and detailed pain history should be taken, ideally within
the setting of a pain clinic, or for those with chronic diseases within a specialist
CRPS service . The main aim of any pharmacological intervention is to reduce pain
so that the individual can undertake effective rehabilitation and increase function in
the limb. It is important for the patient and clinician to agree a treatment plan and the
efficacy of the treatment, or intolerable side-effects, are regularly reviewed. Possible
medications are tabled below which can be prescribed as stand alone treatments or
in combination. The usual prescribing rules of only instigate one new treatment at a
time and ‘start low and build up slow’ are recommended. These principles more
easily enable the patient and clinician to fully appraise the potential benefits or side
effects of each new medication. More detail on the analgesic pathway described
below can be found in the UK CRPS guidelines (ref):
8
Pain at onset and within the early
Simple analgesics and non-steroidal anti-
stages of the condition
inflammatory drugs
If pain not settled to a mild level
within 3-4 weeks consider
neuropathic pain medication as
recommended by the National
Institute for Health and Clinical
Excellence (NICE) guidelines for
neuropathic pain (ref added)
Tricylic anti-depressants e.g. Amitriptyline
SNRI (Serotonin-norepinephrine reuptake
inhibitors) anti-depressants e.g. Duloxetine
Gabapentin and Pregabalin
Topical Lidocaine
Tramadol
Bisphosphonates
Consider for those with < 6 months disease
duration
Opiates are not generally recommended as there is insufficient evidence of efficacy
and a risk of addiction.
Spinal Cord Stimulator (SCS) is the only NICE approved method to treat CRPS and
may be appropriate for those who do not respond to other treatments. An electrical
current is applied to the spinal cord dorsal column via a catheter and an external
magnet controls the device. However evidence suggests that the effect of SCS
diminishes over time (Goebel 2011). I haven't read the RCT that Andreas refers to so
not sure whether to ref it directly. I haven't mentioned ketamine.
3. Physical and vocational rehabilitation
The aim of rehabilitation is to improve function of the affected limb. This may reduce
pain as a consequence but this is not the primary aim. Improved function is of prime
importance to prevent long term complications associated with disuse of the limb .
Once a diagnosis of CRPS is confirmed using the Budapest Criteria (Harden et al.
2010), the patient usually requires referral to other members of the multi-disciplinary
team in order to conduct more in-depth, profession-specific assessments and
commence therapeutic strategies. Each individual should have their own tailor-made
treatment programme. The various treatment strategies will be discussed below;
9
Physiotherapy/occupational therapy - there are many therapeutic approaches
including strengthening exercises, functional activities, pacing, relaxation techniques
and vocational support. Two particular approaches are described briefly below;
Desensitisation The aim is to re-educate the sensory system to make sensations
feel more normal. Different sensations/textures are applied, firstly to an unaffected
area, and then the affected area. Concentration is crucial to aim to replicate the
normal sensation in the affected limb. This activity should be repeated several times
a day and incorporated into daily activities (Lewis et al. 2011).
Mirror Visual Feedback -. Evidence of changes in cortical representation suggest
that pain in CRPS may in part be driven by a mismatch between motor output and
sensory input. Providing the patient with a more ‘normal’ looking limb, via the use of
mirrors, has shown to provide analgesic benefit in CRPS (McCabe et al. 2004).
Patients are invited to position their limbs either side of a mirror so that the affected
limb lies hidden from view on the non-reflective side and the reflected image of the
unaffected limb is in the perceived position of the affected one; thus seemingly
providing the perception of two visually and functionally ‘normal’ limbs. Gentle
congruent movements are performed by both the unaffected and affected (out of
sight behind the mirror) limbs thereby providing corrective sensory feedback
(McCabe 2011).
4. Psychological interventions
The individual may benefit from psychological assessment to identify any factors that
may impede their rehabilitation progress. Strategies to develop coping skills may
support management of anxiety and depression, counter-productive behaviour
patterns and external influences. (Turner-Stokes & Goebel 2011)
Case studies revisited
Possible pathways of care relating back to the case studies are described below.
Claire - Case study 1
CRPS pillars of care
Physical and vocational rehabilitation
Possible treatment approach
Claire was encouraged to touch, view
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and use her limb little and often. She was
referred to her local physiotherapy
department for specific advice on upper
limb exercises. This included land and
hydrotherapy based exercise. She was
seen by her local hand therapy clinic to
improve function in her hand and advice
on conducting activities of daily living
Pain relief
Simple analgesics helped enable Claire
to increase functional activities. Other
medications were likely to be
Amitriptyline, Gabapentin or Pregabalin,
aimed at treating neuropathic pain.
Psychological interventions
Psychological support was offered and
Claire was reassured that her symptoms
should resolve quickly following the
normal course of recovery
Patient Information and education
Verbal information was supported with
written leaflets. Claire was made aware
of web-based resources such as
CRPSUK and Arthritis Research UK.
www.crpsuk.org
www.arthritisresearchuk.org/arthritisinformation/conditions/complex-regional-painsyndrome.aspx
Claire was committed to her rehabilitation programme, despite having to work
through the pain. Her symptoms gradually reduced over time and she returned to
work, using a graded approach, three months after diagnosis.
Gloria - Case study 2
CRPS pillars of care
Possible treatment approach
Physical and vocational rehabilitation
Gloria had previously received all
community based interventions (as
described in the above case study) and
now required more specialist support. In
Gloria’s case this was an admission to a
specialist CRPS rehabilitation service
that provided daily physiotherapy,
occupational therapy, hydrotherapy and
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valued goal setting
Pain relief
Comprehensive review of medication
during her in patient stay and treatment
plan agreed. Consider referral for a
Spinal cord stimulator.
Psychological interventions
Psychological support during the
inpatient stay comprised group and
individual sessions.
Patient Information and education
The rehabilitation strategies were
reinforced with written information.
Information was provided regarding
support networks such as CRPSUK
Gloria returned home with some functional improvement which she sustained by
adhering to her rehabilitation programme. She is aware that she may experience bad
days but is better equipped with strategies to get through these times. She will
continue to be followed up by the specialist centre with the aim of building on the
goals she has achieved to date so as to continue to improve her function and quality
of life in the long term.
The Nurses Role
The management and treatment of CRPS primarily aims to improve function of the
affected limb and enhance the individual’s quality of life. Nurses may meet people
with CRPS in both the primary and secondary care settings but are more likely to be
involved in the care within the secondary care setting such as pain clinics or
rehabilitation wards. The nurse can play a key role in supporting the individual
toward long term self-management (Department of Health 2006; The Health
Foundation 2011). Care of the individual with CRPS involves a multidisciplinary
approach and liaison with other members of the team is an essential part of the
nurses’ role. The team may comprise physiotherapists, occupational therapists,
physicians, clinical psychologist and health psychologist.
It is vital for the nurse to build a relationship of trust with the patient. They may have
been assessed by numerous health professionals and have endured many
examinations which may be extremely distressing when they wish to avoid contact
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with the limb at all costs. Here, the nurse can demonstrate awareness of the
allodynia, not touching the affected limb or, if essential, then asking the patients
permission; both to gain consent and to prepare them for the contact. It is important
to demonstrate belief in the seemingly strange symptoms of the condition and to
offer reassurance that it is not in the mind. Recognition of the psychological and
social impact of the condition is an important aspect of care and in addition the affect
that the condition may have on the individual's family and carers. Information and
advice may be required regarding vocational support.
When reviewing or prescribing pain medications it is crucial that a detailed pain
history is taken. Referral to a specialist pain clinic should be considered.
The in-patient setting;
It is important to recognise that an in-patient stay for specialist rehabilitation, or other
interventions, can be a challenging experience for the patient. They will be away
from family and friends, and a home environment which they have adapted to meet
their everyday requirements. Some people may be anxious about being in hospital
as at home they may rarely socialise or even go outdoors, due to pain, low mood
and to a fear of accidental contact with the affected limb by others. Practical
adaptations, such as offering a bed cradle at night to keep bed linen away from the
limb, demonstrate an understanding of the condition.
As a delayed diagnosis has significant negative consequences for a patient’s long
term healthcare outcomes then it is crucial for nurses to have an awareness of
CRPS. In particular they should be familiar with the presenting signs and symptoms
of the condition so they consider a diagnosis of CRPS and promptly enact referrals
as required. Recent UK guidelines, published by the Royal College of Physicians,
will better facilitate the management of CRPS in both primary and secondary care
(Turner-Stokes & Goebel 2011) and hopefully raise the profile of this condition.
Key points



CRPS is a debilitating, painful condition affecting a limb
To improve outcome there needs to be prompt diagnosis and early
treatment
The treatment aims of CRPS are to improve function and quality of life,
which may reduce pain.
13



The individual should be encouraged to engage with their limb,
touching and looking at it.
The individual should be supported to self-manage their condition and
provided with the appropriate information to do so
Refer to specialist services for further management if improvement is
slow or absent
Conclusion
This article has introduced CRPS to the nurse unfamiliar with the condition. Prompt
diagnosis, early referral and management is necessary for best practice and the
nurse can play a vital role in supporting individuals with this distressing condition.
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