Information on CRPS Diagnosis & Prognosis
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…"
To receive a positive clinical CRPS diagnosis, pain specialists and doctors will use the diagnostic assessment known as the Budapest Criteria, which was was brought in during the International Consensus Conference in 2004. The Budapest Criteria was designed to diagnose CRPS. As a relatively new diagnostic text, it takes over from the one from the International Association for the Study of Pain in 1994 (IASP 1994).
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 carry out 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) asserted 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 two 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 2004 states that for there to be a clinical diagnosis of CRPS, certain criteria need to be met. These are:
1. 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)
2. You need to tell the doctor / specialist that you suffer at least 3 or more from the categories below:
3. 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:
There is NO other diagnosis that could better explain the symptoms and signs observed during a physical examination
To make the Budapest Criteria easier to understand, here is a diagram showing the Budapest Criteria for a Complex Regional Pain Syndrome (CRPS) diagnosis:
Diagnosis of CRPS | Budapest Criteria | RSD diagnosis | Budapest Criteria | CRPS diagnosis
Attaining an early diagnosis for cases of CRPS is desirable to allow treatment to begin as soon as possible to try and ensure that the condition doesn't become chronic (Lunden, L.K. et al 2016). 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."
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), is aiming to: "reduce the time taken between the onset of CRPS and the right CRPS diagnosis"
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 CRPS 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), it was 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. 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 the condition (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)."
One question we are often get asked is "Is CRPS a psychological condition?" We want to reassure you that Complex Regional Pain Syndrome (CRPS) is not a psychological disorder, nor does it follow on from any mental illness.
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 predominantly 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)
"More importantly, many people who have developed CRPS have no history of mental illness" Hill, R.J. et al. (2012)
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 the is 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 proven during clinical trials and studies concerning early treatment. 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 Complex Regional Pain Syndrome 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 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 required 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 endless as to questions surrounding CRPS.
To understand more about what CRPS treatments are available to you, please visit our treatments page.
A UK research study was recently undertaken by Shenker, N. et al. (2015), concerning the long-term prognosis of CRPS sufferers using the CRPS-UK Registry, a web-based 35 year project. 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, one very interesting key point was that: "Chronic CRPS appears to occur more frequently in left-handed individuals."
In another recent study from Van Velzen, G.A.J. et al. (2014), 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
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.
Delayed CRPS diagnosis for children is also a problem, as it is for 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, as suggested by Saito, Y. et al (2015), is due to: "…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."
Have you seen that Burning Nights CRPS Support have a CRPS in Children and Teens leaflet? Head over to our online shop and get yourself a copy. These leaflets are also available to download for free and we can send the CRPS in Children and Teens leaflets directly to your GP or pain clinic or hospital. Contact us for further information.
From the research available, 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 change 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 prognosis for CRPS patients.
Stay up to date with Burning Nights CRPS Support and what's going on with CRPS.
Last Updated: 03/07/2019