CRPS Diagnosis & Prognosis
Information on how CRPS is diagnosed and prognosis
How is CRPS Diagnosed?
Complex Regional Pain Syndrome is a difficult condition to diagnose and to treat. Currently there is no one particular clinical test that will give a definite positive diagnosis of Complex Regional Pain Syndrome (CRPS) formerly called Reflex Sympathetic Dystrophy (RSD).
In a study (Shah, H. & Kirchner, J.S. 2011) they said that:
“Complex regional pain syndrome (CRPS) is a challenging pain condition for doctors and patients…”
What is the Budapest Criteria for CRPS?
To receive a positive clinical CRPS diagnosis, pain specialists and doctors will use the diagnostic criteria called Budapest Criteria. The Budapest Criteria was brought in during the International Consensus Conference in 2004.
The Budapest Criteria has been designed to diagnose CRPS. This new diagnostic test, Budapest Criteria, takes over from the one from the International Association for the Study of Pain in 1994 (IASP 1994).
How Does the Budapest Criteria Work?
The pain specialist or doctor will discuss with you your medical history, symptoms you may be having and any signs or changes. They also may do bones scans, thermal study, nerve conduction studies, EMG, MRI scan and x-rays. The Budapest Criteria does provide a solid diagnosis for established and severe CRPS (Dutton, K. & Littlejohn, G. 2015).
In another study Friedman, A. (2015) believes that:
“It is critical to follow international criteria on making the RSD diagnosis; overdiagnosis can lead to inappropriate interventions and further disability.”
In a research article by Kim, H.J. et al (2015) they investigated the predictive value of Sympathetic Skin Response (SSR) to try and attain a positive CRPS diagnosis from a group of 13 patients who had received a possible Complex Regional Pain Syndrome diagnosis. They compared the SSR to 2 other forms of RSD diagnosis; three-phase bone scans (TPBS) and Thermography. They concluded that SSR may be helpful in trying to ascertain a CRPS diagnosis.
Even though there are distinct advantages to having an internationally recognised criteria for diagnosing CRPS, it can lead to problems in over-diagnosing the condition. Dutton, K. & Littlejohn, G. 2015 and Harden, R.N. et al. 2010
If there is no known injury or illness that contributed to the problems then the doctors and specialists would carefully check if there is no other treatable condition that has been missed.
The Budapest Criteria To Diagnose CRPS
The BUDAPEST CRITERIA 2004 states that for there to be a clinical diagnosis of CRPS certain criteria need to be met. These are:
- There needs to be lasting pain which is disproportionate to the initial injury or illness – The Doctor needs to judge when pain is “disproportionate in time or degree to the usual course of pain after any trauma or other inciting event.” Different traumas or events may have different healing times, and deviation from that should alert the clinician to the possibility to CRPS (Dutton, K. & Littlejohn, G. 2015)
- You need to tell the doctor / specialist that you suffer at least 3 or more from the categories below:
1. SENSORY – This means that you describe symptoms of increased sensitivity or hypersensitivity on your limb
2. VASOMOTOR– This is when you describe temperature differences in your limb and / or skin colour changes and / or difference in your skin colour between the limbs
3. SUDOMOTOR / OEDEMA – You describe oedema (see the GLOSSARY) and / or sweating changes and / or sweating asymmetry
4. MOTOR / TROPHIC – Reports of decreased range of limb motion and / or abnormality of a muscle or nerve that effects or produces motion (including tremor, weakness, dystonia..) and / or trophic (see GLOSSARY) changes (includes changes in nails, hair, skin…)
- You must ALSO show at least one (1) sign observed by the doctor or specialist at your appointment, in 2 or more of the categories below:
1. SENSORY– Evidence of hyperalgesia (See GLOSSARY) usually following a pinprick and / or allodynia (proof of pain to a light touch and / or deep somatic pressure and / or joint movement)
2. VASOMOTOR – Proof of temperature change in 2 limbs or more and / or skin colour changes
3. SUDOMOTOR / OEDEMA – Proof of swelling or oedema and / or sweating changes and / or sweating asymmetry
4. MOTOR / TROPHIC – Evidence of decreased range of motion and / or motor dysfunction (such as tremor, weakness, dystonia) and / or trophic changes (skin, hair, nails…)
- There is NO other RSD diagnosis that could better explain the symptoms and signs observed during a physical examination
To make the Budapest Criteria for CRP easier to see, here is a diagram showing the Budapest Criteria for a Complex Regional Pain Syndrome (CRPS) diagnosis:
It is desirable that early diagnosis of CRPS is attained to allow treatment to begin right away to try and ensure the condition doesn’t become chronic. (Lunden, L.K. et al 2016) However unfortunately in the same research article from the clinical experience of the principal investigator of this piece of research has found that:
“….. it became apparent that CRPS often remained undiagnosed and that the clinical conditions of many patients seemed to be worsened following orthopedic surgery subsequent to the initial eliciting event.”
In a UK article by Dr. A. Goebel, University Lecturer at University of Liverpool in a project in conjunction with the Liverpool Walton Centre and the Pain Relief Foundation (See full details below), they are aiming to:
“reduce the time taken between the onset of CRPS and the right CRPS diagnosis”
How are they going to achieve this?
Dr. A. Goebel says in the article entitled “Complex Regional Pain Syndrome – Quicker Diagnosis and a new computer treatment for people with CRPS” that the reduction of time taken for RSD diagnosis is going to be achieved by:
“Patients with CRPS in the greater Liverpool region will be the first In the UK to receive computer guided brain training”
In a 2014 research study undertaken by Dubuis, E. et al. (2014) they found that:
“… patients with longstanding CRPS have serum antibodies to α-1a receptors, and that measurement of these antibodies may be useful in the RSD diagnosis and management of the patients.”
These special auto-antibodies that were found in long standing CRPS sufferers were not found in healthy people or those suffering with fibromyalgia or those with neuropathic pain. However it is interesting to note that it had been known that CRPS sufferers produce these auto-antibodies at the onset of the chronic pain condition but also in CRPS sufferers after many years of having CRPS. (Goebel, A. Body In Mind article 2015)
However, there may be other ideas and beliefs among the CRPS world of research that the condition we know to be Complex Regional Pain Syndrome (CRPS) may be known as something else Goebel, A. & Blaes, F. (2013):
” We propose that CRPS constitutes a prototype of a new kind of autoimmunity, which we term ‘IRAM’ (injury-triggered, regionally-restricted autoantibody-mediated autoimmune disorder with minimally-destructive course).”
Is CRPS A Psychological Condition?
One question the charity often gets asked is “Is CRPS a psychological condition?” We want to reassure you that Complex Regional Pain Syndrome or CRPS is not a psychological disorder, nor does it follow on from any mental illness.
Unfortunately for many years CRPS was seen as a mental illness or even a psychosomatic condition but this has been mainly disproved through research.
However very often we find that CRPS patients develop mental illnesses or psychological disorders after CRPS has started. This is mainly due to patients being left with unrelenting chronic pain 24/7 often without successful treatments to help or being constantly not believed by health care professionals.
CRPS is a ‘real’ condition. It is not something that your mind has made up nor is it following on from mental illness. Your brain and nervous systems have been damaged, so your CRPS isn’t ‘in your head’ it is in fact your brain that has been damaged.
“It is clear that CRPS is not associated with preceding psychological problems, with somatisation, or with malingering. However, even in psychologically sound persons who are unlucky enough to develop CRPS after trauma or surgery will experience psychological distress”
Breivik, H. & Stubhaug, A. (2016)
Hill, R.J. et al. (2012) also stated
“More importantly, many people who have developed CRPS have no history of mental illness”
In this research study Hill, R.J. et al (2012) went on to discuss this further and explained that not only is the assumption that CRPS is all in a patient’s head is completely inaccurate and incorrect, this assumption is hugely damaging to CRPS patients worldwide:
“Suspecting that psychological factors are entirely responsible for influencing CRPS carries the implication that pain is all in the patient’s head, and ultimately blames the patient for their pain. This inaccurate assumption is damaging to people with CRPS who are in desperate need for appropriate care and treatment interventions by their physicians”
Complex Regional Pain Syndrome is a difficult condition to predict how the condition will progress in a particular patient, as every patient is an individual. Therefore there’s no one answer to what is the prognosis for CRPS.
In the research study from Carr, E.S. et al. (2016) concerning both CRPS diagnosis and CRPS prognosis, they stated that:
“Delay in CRPS diagnosis leads to prolonged suffering for the patient and, at times, unnecessary invasive debridement procedures. Raising awareness of this entity may help physicians make the correct CRPS diagnosis early, as well as initiate a collaborative effort between neurology, anesthesiology, and dermatology to provide the patient the most favorable outcome.”
If you receive early treatment following the injury or illness there is some evidence and research that believe that there is a better prognosis (Shah & Kirchner 2011):
“Early RSD diagnosis and treatment are required to prevent a long-standing or permanent disability.”
The study by Shah & Kirchner (2011) explains that there is a fair chance of recovery or ‘remission’ as CRPS sufferers know it as. It has not yet however been proved during clinical trials and studies concerning early treatment. However the CRPS prognosis will be different for each CRPS sufferer, as everyone is considered unique and their CRPS symptoms although they will have a common trait, will also vary.
CRPS isn’t usually considered fatal. However CRPS can sometimes lead onto other chronic illnesses. Unfortunately there are a number of studies that find that there is a higher incidence rate of suicide amongst CRPS patients. CRPS is considered the most painful chronic condition currently known to mankind, and CRPS patients will say that it is an extremely painful condition.
Breivik, H & Stubhaug, A. (2016) found that to stop psychological disorders from starting in CRPS patients after CRPS has begun it was crucial that:
“Early RSD diagnosis and treatment can prevent these secondary complications of untreated CRPS”
In the study by Birklein, F. et al (2015) they gave a number of recommendations for treating CRPS both in the acute stages and the chronic stages of the chronic pain condition. They also stated that:
“If these recommendations are followed, CRPS prognosis is not as poor as commonly assumed. Whether the patients can return to their previous life depends on particular individual factors.”
Occasionally people are left with unrelenting, agonising pain and irreparable changes regardless of what treatment is given to them. Again MORE RESEARCH is definitely require to help understand the actual causes of CRPS, how early treatment affects it, why it progresses in some people and not in others… The list is totally endless as to questions about CRPS.
To understand more about what CRPS treatments are available to you, please visit our TREATMENTS page.
A UK research study was recently undertaken (2015) Shenker, N. et al. concerning the long term prognosis of CRPS sufferers using the CRPS-UK Registry, that is a web-based 35 year project and their aims were:
“… to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population.”
From the same study (2015) Shenker, N. et al., one of the very interesting key points were that:
“Chronic CRPS appears to occur more frequently in left-handed individuals.”
In another recent study from 2014, Van Velzen, G.A.J. et al. concerning the quality of life, they concluded:
“We conclude that loss of QoL in CRPS patients is due mainly to reduced physical health. A comparison with data available from the literature shows that CRPS patients generally report poorer QoL than patients with other chronic pain conditions, particularly in the physical domains.”
* QoL = Quality of Life
CHILDREN & TEENAGERS CRPS PROGNOSIS
Many children and teenagers who have been diagnosed tend to have a good recovery. According to Edward C.T.H. et al:
“the prognosis of childhood-onset CRPS I seems less favourable than usually reported, and is comparable to the prognosis of the adult-onset CRPS I in view of a decreased quality of life and a large relapse percentage (33%) at long-term follow-up.”
In another study by Finniss, D.G., et al. entitled ‘Complex Regional Pain Syndrome in children and adolescents’, it was said that:
“Early RSD diagnosis, referral and appropriate intervention are essential in decreasing pain, suffering and resorting function for children and adolescents with CRPS.”
In a study by Logan, D.E. et al. (2013) they found that children with CRPS reported higher pain intensity and more recent onset of pain at the initial tertiary pain clinic evaluation compared with children with other chronic pain conditions.
However, delayed CRPS diagnosis for children is also a problem as well as adults. CRPS is often missed in children and adolescents with lengthy delays before appropriate treatment is started. Liossi C., Clinch J. & Howard R. (2015) believe that the reason for this may be:
“…. because of clinicians’ lack of awareness or the heterogeneity of the presenting signs and symptoms, although paediatric presentation has several unique features when compared with adults.”
Another reason why CRPS diagnosis in children and adolescents could be delayed is due to Saito, Y. et al (2015) :
“…. the relatively rare association of childhood CRPS with preceding traumatic events compared with adult CRPS and the under-recognition of this syndrome by pediatricians often result in considerable delay in proper CRPS diagnosis.”
So.. to conclude the CRPS Diagnosis and Prognosis of CRPS –
- there is not a test specifically designed to get a proper diagnosis of CRPS, but there is the BUDAPEST CRITERIA for CRPS which explains to Doctors what they must look for to confirm a diagnosis of Complex Regional Pain Syndrome,
- there is no full research giving us the prognosis of how long each person has to live from this debilitating chronic condition. But some research evidence has shown that early RSD diagnosis and then early treatment will aid the recovery and subsequent ‘remission,’ but no clinical trials / studies as of yet to prove this,
- CRPS is not in your head and is not a mental illness nor is it caused by mental illness
From the research we can see that it appears that there is insufficient evidence in many areas of the condition including CRPS prognosis, that are unknown or understood by the Healthcare profession. This is something that as a CRPS charity we would like to alter to give help and support to thousands of Complex Regional Pain Syndrome sufferers, in the UK and also around the world. The Budapest Criteria used to diagnose CRPS is a step in the way forward to trying to eventually treat the condition. However it doesn’t help the CRPS prognosis for patients.
- Berklein, F. et al (2015) ‘Complex regional pain syndrome An optimistic perspective,’ Neurology. 2015. Vol 84(1), pp 89-96.
- Boyraz, I. et al (2016) ‘A Child Patient Followed-up with the Diagnosis of Recurrent Complex Regional Pain Syndrome,’ Turkish Journal of Osteoporosis. 2016. Vol 22, pp 47-9. Full Text Available from: <http://cms.galenos.com.tr/FileIssue/9/945/article/47-49.pdf>
- Breivik, H. & Stubhaug, A. (2016) ‘Importance of early diagnosis of Complex Regional Pain Syndrome (CRPS I and CRPS II) : Delayed diagnosis of CRPS is a major problem,’ Scandinavian Journal of Pain. 2016. Vol 11, pp 49-51. Full Text Available from: <http://www.scandinavianjournalpain.com/article/S1877-8860(15)00129-9/pdf>
- Carr, E.S. et al. (2016) ‘Complex Regional Pain Syndrome,’ Proc (Bayl Univ Med Cent). July 2016. Vol 29 (3), pp 333-334.
- Dubuis, E. et al (2014) ‘Longstanding complex regional pain syndrome is associated with activating autoantibodies against alpha-1a adrenoceptors,’ Pain. 2014, Nov. Vol 155(11). pp 2408-2417. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/25250722> doi: 10.1016/j.pain.2014.09.022.
- Dutton, K. & Littlejohn, G. (2015) ‘Terminology, criteria, and definitions in complex regional pain syndrome: challenges and solutions,’ Journal of Pain Research. 2015, December 11. Vol 8, pp 871-877. FULL TEXT Available from: <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4686318/> doi: 10.2147/JPR.S53113
- Edward C.T.H. et al. (2009), ‘Quality of Life in adults with childhood-onset of Complex Regional Pain Syndrome type 1,’ Science Direct & Injury. August 2009 .Vol 40 Issue 8. pp 901-904.
- Finniss, D.G. et al. (2006), ‘Complex Regional Pain Syndrome in children and adolescents,’ Science Direct & European Journal of Pain. November 2006. Vol 10 Issue 8, pp 767-770. Accepted 13 December 2005. Available online 24 January 2006.
- Friedman, A. (2015) ‘Work-Related Complex Regional Pain Syndrome: Diagnosis and Treatment,’ Physical Med Rehabilitation Clin N Am. August 2015. Vol 26(3) pp 563-572. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/26231966> DOI: 10.1016/j.pmr.2015.04.006
- Goebel, A. & Blaes, F. (2013) ‘Complex Regional Pain Syndrome, prototype of a novel kind of autoimmune disease,’ Autoimmune Rev. 2013, April. Vol 12(6). pp 682-686. Available from: < http://www.ncbi.nlm.nih.gov/pubmed/23219953> doi: 10.1016/j.autrev.2012.10.015
- Goebel, A. (2015) ‘Specific autoantibodies in patients with longstanding CRPS,’ Body In Mind website article. 2015, July 7. Available from: <http://www.bodyinmind.org/autoantibodies-crps/>
- Goebel, A. ‘Complex Regional Pain Syndrome – Quicker Diagnosis and a new computer treatment for people with CRPS‘ Pain Relief Foundation.
- Harden, R.N. et al. (2010) ‘Validation of proposed diagnostic criteria (the “Budapest Criteria”) for Complex Regional Pain Syndrome,’ Pain. 2010, August. Vol 150(2), pp 268-274. FULL TEXT Available from: <http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914601/> doi: 10.1016/j.pain.2010.04.030
- Hill, R.J. et al (2012) “Rethinking the Psychogenic Model of Complex Regional Pain Syndrome: Somatoform Disorders and Complex Regional Pain Syndrome,” Anesth Pain Med. 2012 Autumn; Vol 2(2): pp 54–59.
- Kim, H.J. et al. (2015) ‘Predictive Value of Sympathetic Skin Response in Diagnosing Complex Regional Pain Syndrome: A Case-Control Study,’ Annals of Rehabilitation Medicine. 2015, February. Vol 39(1), pp 116-121. DOI: 10.5535/arm.2015.39.1.116
- Kohr, D. et al. (2011) ‘Autoimmunity against the β2 adrenergic receptor and muscarinic-2 receptor in complex regional pain syndrome,’ Pain. 2011, Dec. Vol 152 (12). pp 2690-2700. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/21816540> doi: 10.1016/j.pain.2011.06.012
- Liossi C., Clinch J. & Howard R. (2015) ‘Need for early recognition and multidisciplinary management of paediatric Complex Regional Pain Syndrome,’ British Medical Journal. 2015. Vol 351; h4748. Available from: <http://www.bmj.com/content/351/bmj.h4748.long>
- Logan, D.E. et al. (2013) ‘Children and adolescents with complex regional pain syndrome: More psychologically distressed than other children in pain?’ Pain Research & Management. 2013, March-April. Vol 18(2) pp 87-93. PMCID: PMC3718058
- Lunden, L.K. et al (2016) ‘Delayed diagnosis and worsening of pain following orthopedic surgery in patients with complex regional pain syndrome (CRPS),’ Scandanavian Journal of Pain. 2016 April. Vol 11, pp 27-33. DOI: 10.1016/j.sjpain.2015.11.004
- Saito, Y. et al. (2015) ‘Complex regional pain syndrome in a 15-year-old girl successfully treated with continuous epidural anesthesia,’ Brain and Development. 2015. Vol 37 pp 175-178. Full Text Available from: <http://www.brainanddevelopment.com/article/S0387-7604(14)00075-8/pdf>
- Shah, A. & Kirchner, J.S. (2011) ‘Complex Regional Pain Syndrome,’ Foot Ankle Clin & NCBI NIH. June 2011. Vol 16(2). pp 351-366. Available from: < http://www.ncbi.nlm.nih.gov/pubmed/21600455>
- Shenker, N. et al (2015) ‘Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry,’ British Journal of Pain. May 2015. Vol 9 No.2 pp 122-128. Doi: 10.1177/2049463714541423
- Shenker, N et al. (2015) As above – Full pdf version
- Van Velzen, G.A.J. et al. (2014), ‘Health-related quality of life in 975 patients with Complex Regional Pain Syndrome type 1,’ Science Direct & Pain (R). March 2014. Vol 155 Issue 3, pp 629-634. Accepted 10 December 2013. Available online 10 December 2013.
WORLDWIDE CRPS GUIDELINES
- American Academy of Pain Medicine (2013) ‘Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 4th Edition,’ Pain Medicine. 2013. Vol 14, pp 180-229. Available from: <http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/epdf>
- Netherlands Society of Anaesthesiologists and Netherlands Society of Rehabilitation Specialists (2014) ‘Complex Regional Pain Syndrome Type 1,’ November 2014.
- Royal College of Physicians (UK) (2018) ‘Complex Regional Pain Syndrome UK Guidelines for Diagnosis, Referral & Management in Primary and Secondary Care,’ Royal College of Physicians. July 2018.
Last Updated: 03/07/2019